When Will the Vaccines Become Available?
The vaccines are coming but they will take time. Only 4.3 million people of the expected 20 million people in the U.S. have been vaccinated. All told about twelve million doses have been given across the world. China and the U.S. have given the most doses with Israel (!) next (950,000), followed closely by the U.K. (900,000), Russia (800,000), Germany (188,000) and Canada (100,000). Just a couple of billion to go :).
The coronavirus vaccines are coming but it will take time.
In the U.S. the CDC is still drawing up non-binding guidelines for vaccine distribution. The states will ultimately decide who gets the vaccines first. Thus far the CDC has recommended that health care workers and those in nursing homes get the vaccines first.
The New York Times reported that the CDC has hinted that it will recommend that essential workers – those working in food and agriculture, manufacturing, law enforcement, education, transportation, corrections, emergency response – be vaccinated next. That’s 87 million people!
Next will likely come adults with medical conditions that leave them at high risk of serious illness and people over 65. Since 54 million people alone are over the age of 65 in the U.S. many of us in the U.S. may be several hundred million doses behind in the vaccine queue. (We’re not essential workers, we don’t have a condition that is recognized to put us at high risk of a serious infection and many of us are not over 65. ) A New York Times interactive page suggested that I would be getting my vaccine in spring.
More time is an ally, though, if you want to get as much information as possible before making a choice. It also, of course, means more chances to get infected. Several ME/CFS/FM experts emphasized the need to employ strict social distancing measures.
The New Mutation
A mutation which makes the coronavirus more contagious was first discovered in the U.K. (but may have originated elsewhere) and may, in fact, be everywhere. (The UK has been keeping better tabs on the viruses mutations than other countries).
Not only will the mutation result in more infections and therefore more death and disease, the fact that the virus is spreading more rapidly increases the possibility of more mutations cropping up. Thus far, while the virus doesn’t appear to be more deadly than before, it is mutating more rapidly than researchers thought it would.
If the mutation is widespread the viruses increased contagiousness may require a higher percentage of the population to become vaccinated to stop the virus from spreading. Anthony Fauci now believes that from 75-90% of the population may need to be immune to the virus to stop it from spreading.
The mutation, then, has put a premium (if a premium was at all needed after the worst month of the virus) on the need to get the vaccines out as quickly as possible.
The Current Vaccines
Many more vaccines will probably show up over the next six months
Nine vaccines have either been approved or been given limited approval. Two vaccines (Pfizer and Moderna) have been approved for use in the U.S. and Canada, and two (Pfizer and AstraZeneca) in the U.K. With sixty-four vaccines in clinical trials and a whopping 19 are in the final stages of testing., many more are presumably coming. Even more are being assessed in animals. Check out how the vaccines are progressing here.
None of the current vaccines are “live vaccines” which can result in life-long protection – often after just one dose – but which do contain a weakened form of the virus, Instead, all the current vaccines will require booster shots. Interestingly, one vaccination review reported that “longer intervals between vaccine doses usually lead to higher immune responses.”
The vaccine studies will be ongoing over the next couple of years. We’ll learn a lot more about them – how effective they are over time at preventing infection or serious illness and any long term effects they might have – over time. Plus, as different vaccines come on the market (expect AstraZeneca and Johnson and Johnson to get approved before most of us in the U.S. have a shot at any vaccine) choices will open up.
Because their immunity may wane people, by the way, who have already been infected with the virus will probably be recommended to take the vaccine as well.
Vaccine Efficacy and Side Effects
All the trials thus far have included a wide variety of age and health levels. People did not have to be healthy to be in the trial, and having a pre-existing condition hasn’t had any effect on vaccine efficacy or side effects thus far. Some conditions were, however, excluded from the study. The Pfizer vaccine was not tested on people diagnosed with “an immunocompromising condition” or “unstable chronic medical conditions’.
Immunocompromising conditions included diseases like lupus, multiple sclerosis, Sjogren’s Syndrome, rheumatoid arthritis, etc. The AstraZeneca vaccine excluded people with “severe or uncontrolled medical comorbidities” or “high frailty scores” (if they were older than 65). It too excluded people with systemic autoimmune diseases such as lupus and rheumatoid arthritis.
Check out what the studies have shown us thus far about safety and efficacy.
The mRNA Vaccines
The Moderna and Pfizer vaccines have taken a new approach to vaccine making which has enabled them to quickly produce vaccines which are very effective at least in the short term.
The doctors from the Complex Chronic Diseases Clinic explained how they work in a Pdf given to their patients.
What the mRNA vaccines are doing is taking the RNA blueprint for just the SARS-CoV2 viral spike protein (without any of the other proteins that would come along with an actual infection by the SARS-CoV2 virus itself) wrapping it in a layer of fat molecules that help deliver the RNA to the cytoplasm of our cells where that spike protein RNA can be copied and translated into the spike protein. Our cells will recognize the spike protein as foreign, chop it up and stick pieces of it on the surface of the cells cradled in a special MHC protein that presents the pieces of the viral spike protein to our immune cells so we can make an immune response to multiple parts of the spike protein. The spike protein RNA was chosen for the vaccine because it was the target of neutralizing antibodies (antibodies that were able to block the virus from infecting cells) found in Covid19 survivors.
From Moderna
Moderna mRNA-1273 Vaccine
- Check out how the Modern vaccine works
As of the date of this blog the Moderna mRNA-1273 (100 μg) vaccine has been approved for us in the U.S. and Canada. It was tested on 30,420 people. Very few people did not get the second dose of the vaccine because of a reaction to the first dose ( 0.5% – placebo; 0.3% – vaccine).
Localized reactions at the site of the shot – The vast majority of participants (86.0%) as expected reported experiencing pain at the injection site. Other common reactions such as swelling and tenderness resolved over 4-5 days. Delayed injection site reactions (those which occurred at least 8 days after the injection) occurred in about 0.5% of participants.
Systemic reactions (fatigue, headache, nausea, muscle and joint pain, etc.) – The second dose of the vaccine produced more side effects. Side effects were also more common in people under the age of 65. The symptoms generally started about 15 hours after the injection and resolved in most people by the second/third day.
More people getting the actual vaccine experienced some adverse systemic reaction (fatigue, headache, nausea, etc.) than those getting the placebo but perhaps not as much as one might expect. Thirteen percent more of the participants who got the first dose of the vaccine vs the placebo (54.9%, vs. 42.2%). Thirty-three percent more of the vaccine recipients who got the second dose (79.4%, vs. 36.5%) experienced them.
Side effects such as fatigue were common throughout. Fatigue was much more commonly experienced after the second dose: (vaccine vs placebo: first dose – 37-27%; second dose: 66%-23%).. Headache was pretty common in both the vaccine and placebo receiving recipients (37-27%), joint pain (17%-12%) and muscle pain (23-14%), nausea (8.3-7.1%), chills (8.3-5.8%). Hypersensitivity reactions occurred equally in the vaccine and placebo groups (1.5%- 1.1%).
Every one of the 30 participants in the trial who came down with a severe case of Covid-19 were in the placebo group. None of the people who got the vaccine and became infected had a severe case of COVID-19.
The Pfizer BioNTECH BNT162b2 Vaccine
The Pfizer BioNTECH vaccine has been approved in the U.S, Argentina, Chile, Costa Rica, Ecuador, Kuwait, Mexico, Panama, Singapore, the U.K. and the European Union, Bahrain, Canada, Saudi Arabia, Switzerland, the World Health Organization .
It was tested in 43,448 people. Eight people who had been vaccinated came down with Covid-19 and 162 people who received the placebo making the vaccine about 95% effective. Of the ten severe cases of COVID-19 that showed up 9 occurred in people getting the placebo and 1 in a person who got the vaccine – suggesting that the vaccine helped prevent severe disease as well.
Localized reactions at the site of the shot – As expected pain at the injection site was common. Redness or swelling was less common.
Fatigue is the most common side-effect but usually only lasted a day or two
Systemic reactions (fatigue, headache, nausea, muscle and joint pain, etc.) – Widespread symptoms such as fatigue, headache, muscle aches and nausea were more commonly reported in people under 55 years of age.
Again fatigue was the most common symptom reported with about 45-60% of those under the age of 55 reporting it after vaccination. Twenty-three to 33% of that age group which received placebo reported it. Somewhat smaller percentages of patients reported headaches, and muscle pain showed up in 23-30% and
fever in about 10-15% of those receiving the vaccination. Severe fatigue showed up in approximately 4% of those receiving the vaccination. A very small percentage(.3 %) reported swelling of the lymph glands – which the authors characterized as evidence of a strong immune reaction.
As with the Moderna vaccine most of the side effects resolved within a couple of days.
The Gist
- The coronavirus, perhaps aided by a mutation, is spreading more rapidly and causing more illness and death than ever before.
- Twelve million people across the globe have been given a vaccine but slowed roll outs, particularly in the U.S., have hampered vaccine distribution. With dozens of vaccines under development expect more vaccines to become available as time goes on.
- People in the U.S. who are not in nursing homes, who are not essential workers, who do not have a co-existing condition that raises their risk for severe COVID, or who are not over 65, will likely have to wait four or five months to get vaccinated
- The vaccines were tested in a wide range of ages and health conditions (but in people with systemic autoimmune diseases such as lupus, Sjogren’s Syndrome, multiple sclerosis or rheumatoid arthritis.
- Thus far three vaccines – all using recently developed approaches – have become more or less generally available in the U.S., Canada and/or the U.K.. Thus far the vaccines appear very safe in the population’s tested.
- Side effects such as fatigue, headache, muscle pain, etc. are common but usually disappear within a day or so. The side effects are a sign of the immune system responding.
- Every vaccine has produced more side effects after the second shot than the first and every vaccine has produced more side effects in younger (<55-65) compared to older people.
- The Pfizer and Moderna mRNA vaccines produced a phenomenal efficacy (@ 95%). The efficacy of AstraZenaca vaccine was much lower (@60%) but efficacy soared to about 90% when the participants were accidentally given a half-dose.
- ME/CFS/FM experts offered a range of opinions from those enthusiastically recommending the Pfizer/Moderna vaccines (Dr. Natelson) to those leaning towards taking it (Complex Diseases doctors, Levine, Lapp) to those taking a wait and see approach (Bateman, Stein, Kerr).
- If you do decide to take the vaccine getting a good night’s sleep beforehand may help. Several doctors made several recommendations how to best prepare for taking the vaccine (see the blog).
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THE ME/CFS and FM CORONAVIRUS VACCINATION SIDE EFFECTS POLL
Tell us how your coronavirus vaccination went and find out how other people with ME/CFS and/or FM fared with their coronavirus vaccination in Health Rising’s Coronavirus Vaccine Side Effects Poll.
AstraZeneca/Oxford University ChAdOx1 Adenovirs Vaccine
AstraZenaca’s vaccine was built taking an adenovirus which typically causes colds in chimpanzees and adding a gene that codes for a coronavirus protein – thus training the immune system to respond to the coronavirus. This vaccine is cheaper and easier to transport than the other vaccines.
While several other adenovirus vaccines are in development, adenovirus vaccines are a relatively new development: only one has been approved for use before. AstraZeneca announced on Dec. 11 that will combine its vaccine with another adenovirus vaccine – the Russian Sputnik V vaccine – to see the combination will provide more protection.
AstraZeneca’s vaccine is approved for use in the UK and India but the company will likely not ask for FDA approval in the U.S. until February. if it is approved the U.S. plans to buy 300 million doses.
The AstraZenaca trial were much more complicated. They began with four different trials which were then merged into three trials when a booster shot was added. Trouble getting the vaccine also meant that most people got the booster shot after 12 weeks instead of the four weeks first planned. Plus some people received an unusually low dose for their first shot. (The New York Times reported that dose was mistakenly cut in half.)
The smallest of the trials by far, the AstraZenaca trials included 11,636 participants. The vaccine’s efficacy was much less (@62% compared to the 95% of the mRNA vaccines) in people who got two full shots of the vaccine. Vaccine efficacy, though, bounced up to 90% in a group which received a low (priming) dose followed by a standard dose. The authors noted that a smaller priming dose has been shown to be more effective in children given a meningococcal vaccine.
Localized reactions at the site of the shot – Pain and tenderness were common (25-60% depending on age group) but not as common as the other vaccines
Systemic reactions (fatigue, headache, nausea, muscle and joint pain, etc.) – As with the other more side effects were seen in the younger participants (< than 55 yrs). Almost 70% of that group experienced fatigue while only about 25% of those older than 55 did. Headache showed up in 40-50% (depending on age group), aching muscles in 25-50%, joint pain in 10-30%, nausea in about 10% and fever was rare. Chills showed up in about 30% of the younger group and hardly at all in the older group.
ME/CFS Expert’s Recommendations
This is Health Rising’s first shot at getting opinions on taking the coronavirus vaccines from ME/CFS experts. As was noted above most of us will not have to access to a vaccine for several months. By then, as several of the experts below note, we will have much more information on the safety and efficacy of these and other vaccines.
Health Rising will do a follow up blog in couple of months when more is known. Check out our polls on how ME/CFS/FM patients are responding to the vaccines.
Thanks to all the doctors who took the time to respond.
Lucinda Bateman MD – the Bateman Horne Center (Salt Lake City, Utah) “stay safe and wait a few months”
Dr. Bateman is taking a wait and see approach
We [the world] certainly need COVID-19 vaccines desperately and everyone who is healthy enough for the vaccine should get vaccinated, starting with those at highest risk of COVID exposure. This includes healthy family members of vulnerable people.
For the ME/CFS population, my advice is to stay safely quarantined and wait a couple of months while the vaccine is distributed and broadly administered.
Because of the large numbers and close monitoring, we should know fairly quickly how people do with the vaccines. This advice will apply as each new branded vaccine is approved and rolled out. In general, the people who should be most cautious are those who have previously had allergic reactions to vaccines or are prone to severe allergic reactions in general.
Bela Chheda MD, David Kaufman MD, Jennifer Curtin MD – Center for Complex Diseases – at this point favor getting the vaccine
Dr. Chheda
The doctors from the Center for Complex Diseases have produced Covid19 vaccine primer to give to their patients. It provides a general timeline, explains about the mRNA vaccines, touches on autoimmunity, etc.
The document notes that the side effects seen in the trial “are a sign of an immune system kicking into gear…(and) do not signal that the vaccine is unsafe. To date there are no long-term side effects associated with receipt of these vaccines, which will be closely monitored as their use expands.
Given that many of their patients have mast cell syndrome activation (MCAS) or severe allergies the doctors noted that they are keeping their
“recommendations in line with the American College of Allergy, Asthma & Immunology in that the risk:benefit ratio of those with severe allergies still favors getting the vaccine vs. taking one’s chances with getting Covid19.”
As with any vaccine, people with known allergies to any of the vaccine components (polyethylene glycol, etc.) should not receive vaccines containing those items.
“For patients with Mast Cell Activation or Mastocytosis, a discussion with your treating physician is recommended regarding vaccine administration. Our personal inclination would be that patients whose symptoms are stable on a medication regimen would be able to receive the vaccine with proper pre-medication & observation, however if one is still having frequent or severe allergic reactions, that discussion would be far more nuanced. Such patients would likely need to receive the vaccine in a hospital”
Read their Covid19 vaccine recommendations here.
Dr. Nancy Klimas – Institute for Neuroimmune Medicine, Nova Southeastern University
Nancy Klimas emphasized how serious the virus can be.
“COVID kills people. It kills people with over activated and damaged immune systems preferentially – and that is what ME/CFS is all about. So while there certainly is a risk of an ME relapse with these hyper reactive vaccines (the first wave to be released) , you have to weigh the possibility of an ME relapse against the risk of death from COVID. ”
“Of course, these recommendations are simply my opinion, and we will know a lot more about safety in the coming months – but 30,000 plus folks took the vaccines in the trials (that’s a lot) and you have to be moved by the photos of health care professionals lining up to receive their vaccine. Is there a risk? Yes. Certainly more a risk of ME/CFS relapse than anaphylaxis, which should be manageable. Is it worth it? Your decision, weighing all that you can find out. But more than 330,000 Americans have died and the new strain of the virus is likely to make our current rate of infection go much higher. Please take this seriously.”
Dr. Klimas also referenced the American College of Allergy, Asthma & Immunology recommendations and pointed to the American College of Rheumatology guidance for people on immunosuppressive therapy, and issues around vaccination and herd immunity. She ended by writing:
“Still, I think 2021 will be a happy new year. The most vulnerable should see the vaccines available in the coming weeks! And yes, it will take a lot to get our citizens to the level of herd immunity with mostly the logistics in the news, but really it is denial of the risk of COVID 19 allowing this head in the sand thinking. Take a hard look at the stats and your risk. Then make a smart decision.”
Sue Levine MD – New York ME/CFS Expert – veering towards recommending Pfizer or Moderna vaccine
Dr. Sue Levine is leaning towards recommending the vaccine
“In general, I’ve been cautious about recommending flu vaccine, pneumococcal vaccine, and most strongly the shingles vaccine in the ME population because a large proportion of my patients have experienced an adverse reaction of one sort or another with varying degrees of severity. The patients that are disabled are mainly homebound ( so less likely to get exposed to these pathogens) and in those I request that household contacts do get vaccinated.”
“Also, as you know there have been limited published reports of Gardisil being an instigator of ME in a subgroup of patients.”
“I feel, however, because of the current circumstances of COVID being potentially a deadly virus that although caution is warranted, that in general I will be supporting vaccination with either Pfizer or Moderna vaccines whichever is more easily available.”
“As you know they are both mRNA based and are transported in a an `envelope’ and are likely to elicit maybe a more attenuated response and one that would require two doses. to achieve Most ME patients are not immune deficient so I think they will be able to produce antibody.”
“Unlike flu and pneumococcal proteins patients who get the COVID vaccine will never have `seen’ this virus before so the body will have to mount a primary immune response as opposed to a `memory’ response so this reaction could potentiate an adverse response in a subgroup of ME patients and may lead to `autoimmune conditions’ further down the road. It could also elicit a more immediate allergic Type 1 or Type II cytotoxic response.”
“If patients have serious adverse reaction to the initial dose I would consider holding off on the `booster’ dose.”
“There are patients in my practice who have already told me they will refuse this vaccine but I”m probably veering towards recommending it unless there are more reports of adverse reactions…”
From Charles Lapp MD – Hunter Hopkins Center – Moderna and Pfizer vaccines not likely to cause flares
Dr. Charles Lapp believes the Moderna and Pfizer vaccines are probably safe for people with ME/CFS
“Many PWCs (Persons with CFS or FM) have developed a flare or relapse after vaccination with live viruses, so we have always recommended avoiding immunization with influenza vaccine, the MMR, and Hepatitis B, if feasible. The question is: how safe are the COVID-19 vaccines?”
“Currently there are at least 52 COVID vaccines in clinical trials according to the WHO, two of which will be imminently available in the USA. These are produced by Pfizer and Moderna here in America. Products by Astra-Zeneca and Johnson & Johnson are not far behind.”
“The Pfizer and Moderna products are not made from live virus, so they are not likely to cause flares or relapses in our PWCs. They both require two doses 21 to 28 days apart. It takes about 2-3 weeks to develop a 50% level of immunity after the first dose, and that level persists for just a few weeks so the second immunization is necessary. The vaccines are about 90-95% effective, but there is no data yet on how long such immunity will last.”
“Side effects of the vaccination include injection site soreness and fever in most cases, increased fatigue (up to 60%), headache (up to 50%), muscle aches (37%), and chills (32%), especially after the second jab. These symptoms resolve in 24 to 48 hours, and a minority of individuals has to take Tylenol or other remedies for them.”
“Our concern is not the short term effects, but long term. The Pfizer and Moderna vaccines have been administered safely to thousands of individuals already, but new issues are likely to arise after millions of individuals have been immunized. Time will tell. This is currently a moot point since the vaccines will be provided first to medical providers, health care workers, nursing home residents, prison inmates, and first responders. It will probably be many months before they will be available to the public, so we will probably have a much better idea about long term effects by then.”
“Because COVID-19 is such a severe disease we currently recommend that high risk individuals strongly consider vaccination. These include individuals with high blood pressure, diabetes, obesity, asthma or pulmonary disease, cardiovascular disease, and immune deficiency. The vaccines have not been adequately tested in pregnant or lactating women, or in children under 16 years.”
“Since PWCs frequently suffer immune dysregulation, many wonder if they should be considered “immune deficient.” Our opinion is that many patients have an UP-regulated immune system and fend off viruses readily, so they rarely fall ill. If you are the type of individual who “catches every virus that comes along,” then you are probably in the minority of DOWN-regulated patients and should highly consider the vaccination when it is available.”
“Despite immunization there is still a small but significant chance one could contract COVID-19; therefore, prevention is KEY. Dr. Lapp has just reviewed dozens of past epidemics and one point is clear: frequent washing, hand sanitizing, face masks, and isolation are crucial for avoiding infection.”
Eleanor Stein MD – Eleanor Stein MD FRCP(C) (Calgary, Canada) A “Wait and See” Approach
Dr. Stein is taking a wait and see approach.
Noting that there are different vaccine types and until data begins emerging from the first people vaccinated (starts in Canada next week in Emergency and ICU staff and respiratory therapists) we won’t know which vaccine type or brand poses more or less risks relevant to ME.
“I’m taking a ‘wait and see’ approach. By the time in Canada that ordinary citizens are getting vaccinated (perhaps 5-6 months) we’ll have more significant data.”
Update! Dr. Stein now states that “with very few exceptions” the answer to the question whether someone with ME/CFS/FM should get vaccinated is “YES”
Dr. Stein also noted that Michael Houghton from Edmonton who was awarded the Nobel prize this year for his work on HCV is taking a different approach to vaccine production than the quicker and newer mRNA approach. Houghton is using an adjuvanted subunit protein using a COVID-19 spike protein primer which has proven effective with HBV and shingles. Houghton believes his approach will produce a safer, more effective and longer lasting antibody response.
Ben Natelson MD – Pain and Fatigue Center (New York City) – Take it!
Dr. Natelson advocates taking the vaccine.
“If I was an ME/CFS patient, I would want very much to get vaccinated against Covid. So I strongly recommend trying to get the vaccination ASAP except for those who are bedridden and isolated from the risk of Covid. But even those patients have caregivers who are not with them 24/7, so they too are at risk for Covid.”
Advice for Taking the Vaccine
Below are suggestions for how to take the vaccine as safely as possible. Note that the vaccines take some time to make their mark. The Pfizer vaccine reached full efficacy at least 7 days after the second dose.
In the 2019 review “Factors That Influence the Immune Response to Vaccination” the authors report that chronic emotional stress, loneliness and isolation tend to reduce antibody responses to vaccinations. On the other hand having a positive mood may help. The results have been conflicting but some evidence suggests that Vit D supplementation may enhance antibody responses and low Vit D levels may reduce them.
Getting as good a night’s sleep as possible may help. A lot of immune repair and building goes on during sleep and several studies found a link between poor sleep in the nights prior to a vaccination and a reduced antibody response. A recent study found that shorter sleep durations on the two nights before the vaccination were associated with fewer antibodies 1 and 4 months later.
Cameron brought up something to think about:
“I wanted to mention something I heard an “expert” say on NPR this a.m.: don’t take anything to curb the symptoms before getting the shot; only take something AFTER getting the shot if needed because anti-inflammatories reduce the immune response and can weaken the protective effect the vaccine can have for a patient.”
A WebMD article “COVID-19 Vaccine: How Best to Prepare (webmd.com)” suggested not boosting allergic medications or taking NSAIDS (anti-inflammatories), drinking alcohol, exercising strenuously (no problem!) before the vaccination (afterwards is fine). Plus perhaps taking immune supplements (including Vit, D) to prime the immune system to work better when exposed to the vaccine. Above all try to get a good nights sleep.
Dr. Nancy Klimas
“Please note that if you take the vaccine you should take the whole dose, and the current vaccines, Pfizer and Moderna, should be administered twice. It is not yet known how long the immunity will last, but there are blood tests that look at antibody levels available. They came to market very quickly, we will know more about the quality of the antibody tests over the next few months.”
“Most importantly, vaccination is not 100% (in fact the two initial vaccines trials were 95% effective in preventing or reducing the severity of infection) So vaccination does not exclude strict distancing guidelines, and the masks continue until “herd immunity” levels of vaccination have been reached (70% of the population)!”
You can mitigate the risk in a number of ways – just the way you do when you feel a relapse coming on. Before the vaccine make sure you are taking enough antioxidants, particularly NAC or glutathione and coQ10. The big mediator of post vaccination relapse and immediate reactions is mast cell activation. If it happens immediately, that is anaphylaxis, but if it happens slowly and low grade over days the mediators mast cells release can drive a classic ME/CFS relapse.”
“So, take an antihistamine before and for several days after the vaccine – the strongest one you tolerate. (Benadryl is one of the strongest, Zyrtec is another good choice). There are many mast cell stabilizers, watch Dr. Maitlands excellent lecture on our web page from the recent conference we sponsored on the subject if you want to know more: Managing the Syndrome Soup: POTS, EDS, MCAS & ME/CFS https://www.nova.edu/nim/events.html”
There are natural supplements that act to block or clear histamine and stabilize mast cells such as alpha lipoic acid, ascorbic acid, B6, diamine oxidase enzymes (DAO), luteolin, N-acetylcysteine (NAC), Omega-3’s, riboflavin, SAMe, quercetin, and natural sources of theophylline like green and black teas.
If you have been diagnosed with mast cell activation syndrome it would make sense that your risk of an immediate reaction to any vaccine should be higher, though the data on the risk to people with mast cell activation syndrome or prior vaccine allergic reactions is not yet known with the COVID vaccines.
I suspect we will know fairly quickly , with millions of doses already administered. So you may want to wait (taking all of the COVID precautions very seriously) and when you do take the vaccine plan to stay in the medical setting for at least 30 minutes, consider several hours, to be in a safe place if you do have a reaction.
In this special circumstance premedication with a steroid, the same way we pre-medicate people who need a CT scan with iodine contrast dye, could be provided by your physician. (That could, she told, me blunt your immune response to the vaccine.)
Dr. Lucinda Bateman
If you decide to get the vaccine, be rested and stable prior to the vaccine, and plan on resting/relaxing for at least 72 hours afterward. Supportive care will include anything you usually do for flu symptoms, PEM, allergy flares, worsened orthostatic intolerance, etc. If anything, including a vaccine, makes you sick enough that you are unable to maintain adequate fluids and nutrition, or results in fluid and electrolyte losses (sweating, diarrhea, etc), it is always appropriate to seek IV fluids as a primary intervention.
Dr’s Chheda, Kaufman, Curtin
“In general its best to take a vaccine when your body is functioning optimally – that is when the immune system is also optimal – and likely will respond well to the vaccine.”
“Anyone suffering from MCAS/ Dysautonomia/ ME – its best to optimize one’s health with their medications/ supplements as best as possible. Especially for Mast cell activation – being on their MCAS meds is likely also going to reduce the chance of an allergic reaction to the vaccine. ”
They recommend that patients take their “standard daily doses of allergy/mast cell medications at least an hour prior to receiving the vaccine.”
Dr. Kathleen Kerr – Environmental Health Clinic (Toronto)
When giving ME/CFS patients vaccines Dr. Kerr said she usually first gives a half-dose if there’s a concern about side-effects. (It’s possible that giving a half dose may actually be more effective than giving a full dose. We’ll learn more about this as the AstraZeneca trials proceed.)
With regards to preparing for taking the vaccines, she wrote: “If I precede it with an IV Vit shot, I always advise oral Vit C 1000 mg 1 hour prior and 2-3x more that day, as there is (older) data showing vaccine response depletes intracellular C.”
Theresa Dowell (FNP, PT – Four Peaks Healthcare Associates, Flagstaff, Arizona)
Three days prior to the vaccine, increase antioxidants. Depending on which antioxidants you are taking, consider these doses: Vitamin C 1,000 mg twice daily, Ubiquinol 200 mg twice daily, Curcumin 200 mg twice daily, Glutathione 250 mg twice daily.
On the day of the scheduled vaccination, make sure you are at baseline. In other words, not flared. After getting the vaccine, REST for 2 days. Avoid stressors.
If you have a history of an anaphylaxis reaction, hold off on getting the vaccine until we have a better understanding of risks for allergic reactions.
Check out how vaccinations are going in people with ME/CFS/FM and, if you’ve had one – please tell us how you did.
Let Us Know if You Plan to Take the Coronavirus Vaccine in this Poll
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THE ME/CFS and FM CORONAVIRUS VACCINATION SIDE EFFECTS POLL
Tell us how your coronavirus vaccination went and find out how other people with ME/CFS and/or FM fared with their coronavirus vaccination in Health Rising’s Coronavirus Vaccine Side Effects Poll.
Vitamin C and vaccination.
How can I join this group? I would like to post a question for feedback on PEG, a component of the covid vaccines. Thank you
I didn’t get out much b/4 Covid. I am isolating to the point where I don’t go out at all. I only see the person who gets my mail and takes out my trash twice a month. We stay more than six feet apart.
I received a ZPac in an ER in 2019 and went into cardiac arrest. They did cpr for 40 minutes and shocked my heart twice.
I’m not in a hurry to test out these vaccines. I want to get vaccinated. I was told 30 yrs ago not to get vaccines but now I do b/c I had the flu and got very sick. Since the Cardiac Arrest I even got the pneumonia vaccine.
I was diagnosed with CFS in 1990. I’ve struggled for 31 years. My symptoms are fairly consistent to the point I’m always sick. I don’t want to experience a full blown relapse at my age. I’m not ready for a nursing home.
Kat W… Thank you for your post. Very informative!
Kat W, what does your diet look like? Have you gotten rid of all flour products, all wheat, all potatoes, all breads, all sugar? Do you eat leafy green food and raw and natural food everyday, do you drink spring water or the tap water full of chlorine etc.? do you get out in your back yard and get vitamin d from the sun and sweat and exercise? All of these things has helped my CFS and might help you.
I am a scientist and an ME/CFS patient who is extremely well informed. This vaccine will kill or trigger a lot of ME/CFS patients. Most of us are auto-immune. That’s immune compromised by definition. That means we should not get vaccines because our immune systems will not respond properly to any vaccine. I am shocked and appalled at the supposed “experts” who were quoted in this article. Not a single one said “Take Vitamin D3, Vitamin C, and zinc every day” which is really how you survive this virus and all other viruses when they are around. If you are super high risk for Covid, you should also take HCQ or ivermectin prophylactically. These are proven effective, and you can read the research articles yourself by going to c19study.com. Get informed and stay away from this very dangerous vaccine.
These “supposed ‘experts'” whom you are “shocked and appalled at” have been researching ME/CFS and treating patients for decades and are highly respected by the majority of professionals and patients in the worldwide ME/CFS community. You may disagree with their advice, but you have not earned the right to refer to them as “supposed experts” until you have spent decades studying this illness yourself. You can question their advice but not their expertise.
I agree with your analysis. Question experts’ advice but not their credentials unless you have factual evidence to challenge their expertise in a particular field.
I was diagnosed CFS/ME in Sept 2002 by three specialists at Kingston Hospital in London. I was 62 and now 80. For over 20 years I suffered from frequent bouts of colds and flu. 8 years ago I was advised by a homeopathic consultant to boost my immune system and it appears working. and it is simple. I am daily taking a cup of Echinacea tea, Vitamin C, and Vitamin D and Garlic Tablet (1200mcg). I did not have a single attack of cold or flu in this 8 year period. Why the learned specialists are not advising us on how to boost our immune system, and enjoy a healthy life rather than become dependent on short term medicine based reliefs?
Readers here are not allowed the right to question everything, Cort? Who decides, and what are the criteria at HR? The dedicated experts here may be excellent yet the best experts are human, science changes weekly, and so does reported data.
Many thousands of other experts (not all ME/CFS) worldwide do not recommend the cov vaccines; disturbing accounts are surfacing about the amount of deaths and/or injuries associated with the mRNA vaccines. See the document called the Great Barrington Resolution online, which is still collecting signatures.
Those choosing complementary approaches might see the many videos from internationally known Dr. Dietrich Klinghardt and other respected experts, many from the environmental medicine field. Some are understandably afraid of reprisals should their opinion become publicly known. Of course conventional Big Pharma stockholders have considerable to lose should real-time data about the negative long term effects of this particular very experimental vaccine group be honestly and promptly reported.
People deserve to know that there are two approaches to medicine: the bioterrain theory and the germ theory. Broader or even simple research will reveal which approach is appropriate for each person at any given time.
What type of scientist are you?
I googled her name. She seems to be a physicist, so she has no expertise on what she is talking about (unsurprisingly given the claims).
I wholeheartedly agree! These so called experts are leading sheep to slaughter. Dr. Enlander agreed I should not be vaccinated for the flu shot. Can’t imagine he’d feel any different with this. I had CV. I survived. People need to learn to take care of themselves. If nothing else for the love of God stop eating sugar people. I have an entire regime I take. I’m already vaccine injured from the tetanus shot in 1994. Got very sick from a flu shot in the 90s. Never touching another poison needle again. Every patient needs to read Plague of Corruption.
This is part of what I do. https://www.evolutamente.it/new-guidelines-for-melatonin-and-ascorbic-acid-supplementation-during-covid-19-maintenance-and-infection-stages/
I am interested in your reaction to the tetanus shot, I had a severe reaction both local and anaphylactic to it in 1970s and developed mast cell activation and ME as a result. I eventually recovered but have never heard of other reactions to tetanus shot and would like more information on your experience.
Dejurgen asked me to chime in here.
I took a tetanus vaccine and then got sicker as an adult. Was over 20 years ago and things got worse after that. In last 5 years, I had an antibody test to tetanus to see if I was still immune. It was super high. So even though they say it is good for 10 years, it may be much longer and who knows why it was so high and also why I got sicker from it.
This was the last vaccine I had.
Having been damaged from a vaccine when a child to the point of being unable to walk or even lift my head from a pillow. And missing nearly a year of school. Vaccines are concerning to me. My dad also got Gillian Barre from a flu vaccine.
With me also having Hypogammaglobulinemia and low IGG levels, its concerning what part that plays into my having poor vaccine response. But with these things having happened, and with a possible genetic component……my doc advised me to NOT take any vaccine.
I too have MCAS. My mom did too. So there may be more genetics involved there too.
Sadly, that vaccine as a child had the same affect on my sister and a male friend of ours (we all took it at the same time). We all missed that year of school with same symptoms. None of us has been well since. We all are DX with ME/CFS and FMS. And I feel that was a strong turning point for us all. I was around 8 years old. So I can definitely be put in the long hauler category.
But the last couple years, I’m starting to have improvement. So never give up HOPE!
The SNP rs2298383 Reduces ADORA2A Gene Transcription and Positively Associates with Cytokine Production by Peripheral Blood Mononuclear Cells in Patients with Multiple Chemical Sensitivity
https://www.mdpi.com/1422-0067/21/5/1858
They have found a link in genetics of those with higher issues with chemical sensitivity. The allele of TT on this gene was found that people had more issues. I’m TT. So, there may be a similar connection with not so good response to vaccines(?).
If you look up GWS (Gulf War Syndrome), certain ones did worse with vaccines and medicines required for going into battle. Those who weren’t deployed did not have to take same medication or vaccines and those didn’t get sick. So there may be a genetic component there too. They found certain HLA types at play here. And interestingly, they look at these same HLA genetics to help determine if one is genetically predisposed to inability to throw off both mold and biotoxins. (They look at these with CIRS – Chronic Inflammatory Response Syndrome. Of which I also have the worst genetics for.)
Karen, No one should dispute your personal experience. Could you however tell us what is the alternative to a flu jab particularly for folks over 65. Would they not be exposed to greater risk if they just stopped taking a flu jab. I had a similar experience as yours. Every time I took a flu jab I suffered 10-14 days’ of misery. But I carried on until I found an alternative treatment. I boosted my immune system and I am now ‘flu jab free’. So my advice as a layperson is: please do not stop flu jab until you have found an alternative cure that is safe and effective.
I have GBS from a flu shot in 1999. Took me a solid year in a wheelchair but I got up again. For that reason I knew not to take the J&J vaccine. I got Moderna this morning. I’m fine but it definitely triggered a fibromyalgia flare. I’m living for four hours from now when I can take some pain meds.
But I’d do it again. My Type 1 Diabetes, asthma and CKD demanded it.
Good decision Faye. Good luck.
“This vaccine will kill or trigger a lot of ME/CFS patients.”
As of today, that (the kill part of it) is completely unproven with *zero* confirmed cases.
Covid19 infection on the other hand has killed somewhere close to 2 million and counting people worldwide, with many of them being far more healthy then most of us ME/FM/… patients are.
With a very rough estimate of 10 to 15% of people in many developped countries having Covid antibodies due to infection, we soon will be able to compare those 2 million and counting deaths (and countless people with severe lung damage as in 50% fibriosis in their lungs) to the damage vaccination may or may not do.
10 to 15% of the population should be vaccinated and many of those will be weak elderly with plenty of chronic conditions and many others will be healthy young people working in health care and other priority groups with a too strong immune system.
This level of vaccination likely will be reached in 2 to 3 months and before most of us will even get the chance to have the vaccine. Medical researchers, government institutions worldwide, journalist hoping for a scoop and millions of very critical people will monitor and report the possible death toll of vaccination closely.
We’ll have plenty of chance to assess how many deaths vaccination caused. My prediction? It will be WAY WAY less then 2 million at that time. And the same will VERY likely count for severe side effects like 50% of lung fibriosis that WILL hamper our health very badly if we got it for a very long time.
“Not a single one said “Take Vitamin D3, Vitamin C, and zinc every day” which is really how you survive this virus and all other viruses when they are around.”
You mean this can fight and remove HIV, Ebola or EBV out of our bodies? And it can do so in the very quick times needed to not die from nasty and very quick acting deadly infections like Ebola, Covid? Show me the expert high quality double blind proof on that!
So please, PROVE your point with ACTUAL SCIENCE so that we can make an informed decision rather then claiming you are extremely well informed and urging people to take the VERY high risk to get actual Covid19 that will criple and kill thousands of ME patients if they all followed this advice.
So are there IMO risks to Covid vaccination for us ME people? Hell yes! Are there risks of not taking Covid vaccination for us ME people? Ohhhhhhh Yessssssss!!!!!!
Allow numbers that will soon be available to make a well informed decision, not opinions NOT backed up with data as of yet. In the unlikely case you will be proven right, I will acknowledge it. But by the time you are either proven wrong or right I (and most of us) wont even have had the chance to get a vaccine even if I wanted too, as I am not in a priority vaccination group.
Not specific to a particular shot but science backing the anecdotal “Suspect a vaccination may have triggered my ME/CFS/FM”
https://pubmed.ncbi.nlm.nih.gov/31059838/
Frank,
Thank you for that link.
There is also this article: “Dampness and mold hypersensitivity syndrome and vaccination as risk factors for chronic fatigue syndrome”
– from the journal “Autoimmunity Reviews Volume 18, Issue 1, January 2019, Pages 107-108”
https://www.sciencedirect.com/science/article/abs/pii/S1568997218302660?via%3Dihub
At the time I got the flu vaccine my department had been temporarily relocated to a sub-basement location during renovation of our offices, which we since found had never been intended to house human occupants and had air quality and ventilation issues – I assume mold amongst them.
I recognize vaccinations have caused sufferance in many of us with poor base health or genetic weaknesses.
As my stance seems unclear, I tried to clarify on the bottom of this comment section.
The goal of the above comment I made was to try and made clear that “will kill (or trigger) a lot of ME/CFS patients” is unsubstansiated when it comes to the word kill as of today and is meaningless when not trying to compare to how many will be killed by Covid due to making the choice of not having a vaccination.
Balance is key to good decisions and as the balance in my reaction was unclear I tried to clarify below.
Yes. And I think it’s really important to remember to talk to one’s own doctor/expert to help you decide.
One thing I strongly considered was the initial thought that I could just stay home and wouldn’t need the vaccine. The more I thought about it the more I realized there’s a lot of stuff I can’t control out there. For example, yes I can stay home, but what if I need to go to the dentist or the hospital unexpectedly? Needless to say for me, I decided to get vaccinated.
Dejurgan,
You come across as a Pfizer or Moderna rep/employee? CDC junkie? Watch MSM propaganda 24/7? Just a reminder, none of what you wrote is backed by enough science to prove anything. In fact there is enough evidence (actual science based) to prove your comments wrong.
The for profit CDC is the right arm of Big Pharma/Big Vax….and consistently have been caught in thousands of lies for profit. They make huge profits off of patents (anything to do with a virus, testing, vaccines, studies, etc with no liability as with the vax makers…dig deeper, the CDC is an independent agency, not federal, but receive federal funding.
Why would any one with disabling ME/CFS /FM pain/ etc. brought on by a previous vaccination ever volunteer to be a guinea pig for Bill Gates/CDC/WHO/CCP/Big Vax or Dr. Frauchi profits? Follow the money!
Funny how none of the so called experts here even mentioned Monoclonal Antibody IV Infusion? This is what the millionaire/billionaires were begging secretively for months since mid/early 2020. And have saved countless lives. I love your link here, but very disappointed in the lack of the latest med. treatment options instead of the pushed vaccines on here. Kind of wonder if paid for vaccine support.
Over 148 deaths from the vaccines..170 life threatening conditions with the vaccines, and permanent disabilities with the vaccines. Severe allergic reactions to COVID-19 vaccines were happening at a rate of 11.1 per million vaccinations for a virus that has a roughly has a 99% survival rate (give or take age/med conditions).
FDA lists 22 potential adverse effects of new COVID-19 vaccine
link to FDA Document in PDF Format
http://www.fda.gov/media/143557/download
I agree with your even-handed view and am in a “watchful waiting” mode myself. I’ve had chronic EBV for twenty years with my viral loads doubling since I was vist diagnosed. I’m well aware of the host of other viral conditions related to EBV and I wish someone was looking at that group and whether or not their is over-all improvement OR more serious side effects. There is also the news of Johnson and Johnson-One Shot vaccine that will become available in March and is a slightly different type of vaccine. I’m thinking the fewer provocations to my immune system the better! so for now I will wait.
I believe you are correct maybe add some quercetin. I prefer to be treated with Ivermectin or Hydroxychloroquine then get a vaccine. Big distrust of big pharma we should never allow a manufacturer 0 liability, they have lied so many time and submitted false data,,,, and frankly they have all to gain by injuring people and causing chronic long-term illnesses… that they can exploit. I so amazed how people forget all these criminal charges…
I had my first dose of Pzier on March 9th. I am 36 and all of my Fibromyalgia pain came back after 4 years.it’s been more than 2 weeks and I’m in a lot of pain. I made a big mistake, shouldn’t have trusted to the vaccine!
Sorry to hear Lilly. Good luck with your recovery…
As a UK doctor and nutritional professional ms Mariecki’s article is the most sensible I’ve read in a long time. Whatever ‘scientific research’ programmes published, do we know their motives? No,not 100%, but they are often patentable..just a thought?
I admire you for you honesty and courage. At least what you proffer is actually potentially safer,than unknowns…at any rate, with our current limited knowledge
Hi Sandra, I had my first Astra Zeneca dose 17th jan through work (healthcare) I am 52 and diagnosed with CFS/FIBRO 12 yrs ago.
Immediately after the vaccine I had a tight chest which I put down to anxiety (I am asthmatic and atopic) and 14 hours later at 2 am I woke in agony. Widespread muscle and joint pain and stiffness. 5 days later I am still struggling with pain, night sweats and fatigue. I am unsure about the second dose as I believe it is stronger – I will definitely need to book a week off work. I am after reading this adding in a second antihistamine as I already take cetirizine daily anyway.
I am hoping this doesn’t turn into a flare and will pass.
Thanks Elaine and good luck!
Hi Elaine, I too had a first shot of AstraZeneca at 2pm yesterday and at 2:15am really vicious symptoms of pain started: my absolute worst FM flareup in 20 years. Hope your reactions die down. I would not have got the vaccine had I known the reaction would be this bad.
My doctor (who’s career path was originally epidemiology/virology until autoimmune disease and CFS changed her path) had this to say in August, and has not seen anything to change her mind yet. This also applies to the Pfizer vaccine, as it’s also mRNA. I definitely will not be getting this vaccine.
“A 2017 primer on mRNA vaccine development and mechanisms of autoimmunity mediated from SARS-COV2.
One of the candidate vaccines for SARS-COV2 is mRNA-based (Moderna). If it is released for widespread use as a candidate vaccine, I do not recommend it for patients with autoimmune disease, or those with a strong family history of autoimmunity. I also do not recommend candidate vaccines that use the immunogenic S (spike) protein as their target antigen based on previous candidate vaccines for SARS/MERS, upon which secondary challenge post immunization resulted in severe immunopathology. Their conclusion in 2012 was, “Caution in proceeding to application of a SARS-CoV vaccine in humans is indicated.” We need therapeutics including neutralizing antibodies (Camel nanoantibodies are very hopeful!), prophylactic treatments, and smart, targeted immune support, which is individually tailored for each person. We also need to focus on those with the underlying chronic illnesses most severely affected by these viruses.
“A possible concern could be that some mRNA-based vaccine platforms induce potent type I interferon responses, which have been associated not only with inflammation but also potentially with autoimmunity. Thus, identification of individuals at an increased risk of autoimmune reactions before mRNA vaccination may allow reasonable precautions to be taken. Another potential safety issue could derive from the presence of extracellular RNA during mRNA vaccination. Extracellular naked RNA has been shown to increase the permeability of tightly packed endothelial cells and may thus contribute to oedema. Another study showed that extracellular RNA promoted blood coagulation and pathological thrombus formation.”
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7246018/
https://www.nature.com/articles/nrd.2017.243?fbclid=IwAR2iEpGlzudFCv_AouT84l3XF0s_MM1841xAkdaD1_6s185TxshLxYst8h4#ref-CR166
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3335060/
https://www.cell.com/pb-assets/products/coronavirus/CELL_CELL-D-20-00891.pdf
The Moderna vaccine absolutely triggered an awful ME/CFS flare.
I now regret getting the vaccine three weeks ago. The crushing fatigue and brain fog were once again front and center in addition to a severe headache, elevated heart rate and nausea.
I was disabled from ME/CFS in the 90ties. I was on disability and unable to work or get out of bed for several years. This vaccine reminded me just how far I have come in the past 30 years.
I still have flare ups and need to have a bed rest on occasion for a few days, but that vaccine completely knocked me back to square one for two weeks.
I am now three weeks out and trying to get back to my ME/CFS baseline prior to the vaccine. The fatigue and brain fog are overwhelming and I am too scared to take the second dose knowing how I have reacted to the first dose.
No one could possible understand the devastation and stigma that goes along with ME/CFS unless they have had it disable and destroy a portion of their lives.
I am now 60 years old-It’s all in your head….NEVER do I want to hear that again!
Sorry to hear that Susan…Good luck on getting better.
We will have some polls up on reactions to the virus soon.
Susan, Thank you for your very informative text which is something we all need on this site. Yes, “It’s all in your head” is probably what most of us have heard. People are ignorant to things they don’t know anything about. I’ve heard it all. And how about this? They tell you, “I have chronic fatigue too.” Ha!
Hi Susan – can you tell me exactly why – or what it is in the vaccine that triggers the flare-up of ME/CFS?
I have been suffering from this for years and NO doctor has been able to tell me what’s wrong.
After a flu vaccine, e.g. – and most recently with the first Pfizer Covid dose – I am confined to bed with crushing fatigue, unable to be up or do anything (work? ha!) for more than 15 minutes before I’m back under the covers. I also am felled by this 2-3 times out of the blue during the year.
I stumbled some years ago upon a “treatment” of sorts – 2 doses of doxycycline, (probably thought of it because my illness resembled Lyme disease symptoms – which are treated with doxy.)
So I took 2 – each capsule is 100mg) and lo and behold, I was better within a day. And I’ve done it ever since.
But I was advised by my doctor not to take the doxycycline after the first Covid shot , and, predictably, I was laid up all week with no improvement after even 4 days.
I finally, in desperation, called another doctor and he gave me the go-ahead to take the doxy. Within a day and a half I was back on my feet and am now almost back to normal.
My biggest fear now is the second vaccine, which by most accounts causes even worse side effects.
I am seeing this new doctor on Monday and pray he will be able to help. Thank you!!
Hi all – I actually erroneously submitted this as a reply to someone, not realizing she’d posted her story in Jan.,
My main question is can anyone tell me exactly why — or what is in — the vaccine that triggers the flare-up of ME/CFS?
I have been suffering from this for years and NO doctor has been able to tell me what’s wrong.
After a flu vaccine, e.g. – and most recently with the first Pfizer Covid dose – I am confined to bed with crushing fatigue, unable to be up or do anything (work? ha!) for more than 15 minutes before I’m back under the covers. I also am felled by this 2-3 times out of the blue during the year.
I stumbled some years ago upon a “treatment” of sorts – 2 doses of doxycycline, (probably thought of it because my illness resembled Lyme disease symptoms – which are treated with doxy.)
So I took 2 – each capsule is 100mg) and lo and behold, I was better within a day. And I’ve done it ever since.
But I was advised by my doctor not to take the doxycycline after the first Covid shot , and, predictably, I was laid up all week with no improvement after even 4 days.
Finally, in desperation, I called another doctor and he gave me the go-ahead to take the doxy. Within a day and a half I was back on my feet and am now almost back to normal.
My biggest fear now is the second vaccine, which by most accounts causes even worse side effects.
I am seeing this new doctor on Monday and pray he will be able to do something. Anything anyone can think of that might be helpful — Thank you in advance!!
Susan, you sound EXACTLY like me in every word you wrote about ME/DFS down to the “in your head,” part. My doctor feels I should get the vaccination, but I fear what happened to you will happen to me. I won’t survive a second destruction of my life and prison of a bed and four walls. I know I won’t.
How are you now, Susan?
Susan. I am right there with you. I have CFS and autoimmune problems and I don’t do well with vaccines. The body aches and fatigue starts about a week after I get a vaccine and lasts for months! I got the vaccine a week ago and I feel like I have the flu! I’m really worried this is going to last for months like it always does. I don’t think I’m going to be able to get the second one.
Agreed! Well said!
Please, I pray you seek God’s wisdom and not mere humans.
I completely agree! The CDC, Big Vax & Big Pharma have lost all credibility! After lies upon lies for profit. And Medical field is not far behind them since many have profited by covid 19 billing incentives along with throwing science out the window and beholden to Big Pharma/Big Vaccine and the corrupt CDC.
“Jane Doe”, eh? You’re sounding more and more like a Russian troll farm employee than a genuine patient interested in finding out balanced info to make as informed a risk/benefit decision as possible. Take your Big Pharma conspiracy babbling elsewhere and let the calm, sane, thoughtful people speak, please. Thank you.
Well said.
Sandra, I agree w/ your Vit C, Zinc & D3 method. I have ME/CFS and have taken these since last March along w/ elderberry syrup because of Covid awareness. I also have taken AHCC (recommended for CFS) for years. Along w/ that I take Sam-E. (Probably not related to CFS but an added bonus for joints, mood & liver health). I used to get bronchitis (part of CFS) every year but haven’t had a bout since taking the AHCC. I DID NOT get a flu shot having grown up w/ a mother who practiced homeopathic healing. She warned us of vaccines. Have stayed Covid & flu free but am very careful to wash my hands, wear a mask and social distance. I keep soap, water, a bowl & paper towels in my car. When I come out of a store I wash my hands which makes sense. No fear just caution. And don’t care who sees me. 🙂
Thank you Sandra, I agree! I have taken Zinc, D3, AHCC, Vit C, elderberry syrup since March 2020. And of course wear a mask, wash hands regularly and keep my distance. Interesting that no one has mentioned these supplements.
Do you know what auto-immune means, Sandra? An immune disorder doesn’t automatically mean one is auto-immune.
I have me/cfs diagnosed by an infectious disease specialist over 30 years ago, as well as type 2 ehlers danlos diagnosed by geneticists a few decades ago. I can’t tell you how happy I am to finally find a site that seems to have credible information by expert medical professionals advising on the vaccine for people like me.
As far as ivermectin goes, check out India and Brazil and tell me how well it’s working there…particularly Uttar Pradesh, in India. People have been popping it like candy, as a prophylactic and a treatment. The government of Uttar Pradesh encouraged its use.
It could be that the mutated variants are now resistant to ivermectin due to its great popularity in both Brazil and India. It is profoundly irresponsible for doctors to prescribe it as a prevention, for that reason alone.
It is twice as irresponsible for self styled youtube experts with online forums to allow their members to go back and forth with advice on how to take the equine form if they can’t get their hands on human grade ivermectin.
My suggestion is you ignore advice about these alternative drugs until the results of much larger randomized studies are completed. At the same time, hold off until more is known about why they are no longer working in Brazil and India.
No way! I spent 10 months in bed with CFS. I’d rather die of Covid, then use an Injection, untested. I get sick no one’s looking after me.
I was a very healthy 63 year old when I had vaccines for an Africa trip. I went from hiking 40 miles / week to being house ridden. I live with debilitating pain every day of my life. I believe in quality of life; there are things worse than death. I will take my chances.
I’m so sorry to hear you had that experience. I totally agree!
Thank you so very much, Cort. I trust in you. I questioned all the patient organizations, none could comment on this question. Prof. Scheibenbogen promised to release information on her me Charité website, no entry up to now. I think I will take the vaccine. I survived all kinds of immune reactions and relapses, but I don’t want another virus in my body, and this one is deadly.
Lorraine, so sorry to hear your story. My daughter had a bad response to a hepA/B vaccine at the age of 13. Now almost 25 she has never been the same. Unending fatigue. So sad in anyone at any age, but her life has been stolen from her. No social life at all. As a parent i suffer with her every day!
LindaB – And I am so sorry to hear about your daughter. It is a tragedy at any age but at 13, it is horrifying. I wish I could help. Interesting because one of the vaccines I was given was Hep B just in case I was injured and needed medical care in Africa…”because their instruments would probably not be clean.” The prejudice and the bias is astounding but I wasn’t against vaccine protection so I went along with what was recommended.
I have an MTHFR mutation. If your daughter hasn’t been tested, I highly recommend it. There are things that can be done at this point to help her. I recently learned I have a compound MTHFR genetic mutation which means that my body can barely metabolize toxins. I believe I metabolize at 1/ 10 the rate of a normal person. (Don’t quote me on this. My memory is not great but you get the idea.) My mutation was one of the worst. Your daughter may have the very worst one. For the longest time, I wanted to know “why me?” It took 8 years to ascertain. I would think it would be so easy for the medical profession to test people prior to vaccinating them. Once the immune system is hyperactive due to the additives in the vaccine (think aluminum and miscellaneous chemicals), it is extremely unusual for it to return to normal and so the next big question is “How do I go about getting it back to normal?” Wish I had an answer but I doubt the covid vaccines will help any of us return to normalcy. How much damage will they do to a ME/CFS patient? No one knows. For myself, I am not willing to risk any additional complications. I was in a wheelchair before Christmas so I could go to the Luminaria at the Botanical Gardens. This is a far cry from the woman who hiked everywhere she went…who would be out on the hiking trail at sunrise and not return until sunset. My pain is 24 hours a day and I can not endure it, no less any additional pain which could result from another vaccine.
I hope your daughter will be one of the ones who does recover. It happens!!! The younger the person, the greater the likelihood. Try to stay positive, which I know is difficult.
Lorraine, I too was a healthy 50 yr old prior to receiving a flu vaccine, which (amongst other things) triggered my ME/CFS. At the time, my physician (who was naturopathically inclined) advised against getting it, but I was convinced by the hype. I wish I’d listened to her advice.
I hope that Cort might consider doing a follow-up article focusing on advice from naturopathic practitioners, as well as doctors who have opinions/advice which goes against the flow. Given how much relief (and validation) many ME/CFS patients get from using naturopathic treatments, that isn’t offered or available through mainstream medical approaches, a significant subset of your readers would be interested, I’m sure.
I’m quite concerned about the lack of advice from naturopathic practitioners generally in the media (especially given the rampant censorship that’s been happening in both mainstream and social media), and I find the censorship of alternative voices re: COVID concerning. We’re all adults here, and by rights should be free to examine and accept or reject information according to our own judgement.
As someone whose ME/CFS was triggered by a flu vaccine (it should be noted, I was not ‘vaccine hesitant’ until after I became ill immediately following a vaccine), I am concerned about the lack of information re: cautions from medical bodies in general, let alone ME/CFS physicians. Especially given the poor safety record of previous MRNA vaccine attempts, and the OK given to some companies this time around to skip animal testing entirely (which is where the extreme adverse reactions showed up if I remember correctly). Not to mention their continued exemptions from liability. The latter is most concerning, in my opinion, and doesn’t bode well for those of us with wonky immune systems.
For anyone interested in reading or viewing other perspectives, here are some resources you might want to explore. Note: all of the below have been heavily censored (and their careers threatened &/or sanctioned):
1) Dr. Zelenko’s COVID protocols (prevention and treatment) can be found here:
https://docs.google.com/document/d/1TaRDwXMhQHSMsgrs9TFBclHjPHerXMuB87DUXmcAvwg/edit
2) America’s Frontline Doctors:
https://www.americasfrontlinedoctors.com/
I’d especially recommend viewing their first summit: https://www.americasfrontlinedoctors.com/summit1/
3) Dr. Mercola has been writing extensively on both COVID and the related vaccines: https://search.mercola.com/results.aspx?q=covid#stq=covid
One doesn’t have to agree with any of the above, and they aren’t ME/CFS specific, but to be prevented from hearing what they have to say entirely is problematic, especially given the long history of one-sided medical opinion on ME/CFS (being viewed as psychosomatic, resulting in stigma and lack of treatment) the ME/CFS community has been forced to endure for decades.
Anne… thank you for the links you sent. I agree that those who want to suggest how to prevent the virus w/ natural answers seem to get refuted.
I am assuming that you are suffering from Chronic Fatigue Syndrome (CFS) also known as ME, a very debilitating medical condition? Correct me if I have got it wrong. As you are aware the Covid-19 vaccine does not kill Covid-19, but it does provide an effective (upto 95%) protection (a shield) from catching this dangerous virus from others. Further, this Covid vaccine also does not claim to improve one’s quality of life. I am 79+ and suffering from severe CFS/ME for the past 18 years. It appears to have been triggered by a road traffic accident in 1962. This illness was confirmed by a process of elimination of any other serious similar illnesses. To date (18 years on since it was confirmed in Sept 2002), our doctors and scientists still do not know what causes it let alone found a cure for it. My consultant was bold enough to suggest that I should not hesitate to use any alternative treatments that are beneficial to me even if they have not worked for others, as our modern medicine can not provide treatment for this illness. In my case homeopathy has helped me a lot. I have found Homeopathy a slow treatment compared with our modern medicine to notice a change, but it has worked. It improved my 1-2 hours broken sleep (1962) to 5-6 hours sleep within 6-8 months and with no side effects. My homeopathic consultant’s advice to boost my immune system (a cup of Echinacea tea, Vitamin C, Vitamin D, and Zinc tablets on a daily basis) has worked, but it took over 12 months to notice a visible change. It has saved me from catching colds and flu which were making my life very miserable. I no longer take a flu jab. It has also reduced the severity of my ’24/7′ generalized muscular pain but not eliminated it. Maybe some sweet day our doctors and scientists doing the research will find a cure for this very painful condition. It will be a blessing for 250,000 CFS/ME suffering Brits, over a million Americans not to mention folks in Europe, Canada Australia, and other countries.
Hassan… liked your post. Very informative for those of us w/ ME/CFS
Lorraine, I too am so sorry. Only you know your limits and what your body can handle. God bless you!
I live in California and I know several people (young health care workers) who have already received a first dose of a vaccine–which kind, they were unable to tell me. All said ‘no reaction’ and as far as I know, nobody had anything like ME/CFS.
As for immediate commonly reported side effects, I say, ‘Hey, I already have most of those just by having ME/CFS!’ What I’m most concerned about is if it will trigger long term problems.
What bothers me the most about these vaccines is the exceptionally poor roll out and distribution plan. It is very reminiscent of early Covid testing where there were a number of requirements (been to China, have a fever, have a close acquaintance who tested positive etc.) which severely restricted the ability to get a test.
I understand the desire to vaccinate the most vulnerable first and to protect high risk healthcare workers, but following these strict guidelines may be one of the factors for such skimpy vaccination numbers. Thousands of vials wait while administrators are trying to decide who is most deserving. Some of those vials are due to expire soon too.
I say this hesitation is uncalled for and they should just distribute as fast as they can with emphasis on older citizens especially those with co-morbid conditions. More vials will be coming! Try to get to the most deserving but don’t be stingy!
And this idea that big box pharmacies will handle it all, or that people will need to line up for hours and hours somewhere–there has to be a better way!
By the time any vaccine gets to the ‘general non geriatric public’ we should have learned a lot more about what to expect. For most of us, even older folks like myself, I think it will take a long, long time.
For me, the bottom line with vaccination is that nobody knows what is happening with my immune and neurological systems, and nobody knows how they will respond to any intervention. In the last 5 years, 3 “no-problem” medical actions have each made me almost bed-ridden for a year or more, and have caused serious and apparently permanent harm. None of these reactions were expected, of course. Vaccination results from “normal” people, or from people with identified diseases, say nothing about what the vaccine would do to my collection of rare disorders and many, many mysteries. I’m in such bad shape from previous medical actions, I don’t see how I can take that risk.
I agree Fannie and we need to wait as long as we can to see what the impact is on people with these issues. I am semi-recovered and I have no intention of doing anything that could set me back to being chair bound 18 hours a day! Like Lorraine said above, there are worse things than death. Now that research is happening that could lead to a cure I don’t want to jeopardize that unnecessarily. Isolation is nothing new for me and I can deal with it until more info becomes available. Hang in there. We will overcome this!
Fannie and T – Yes, when covid came and people across America complained about being isolated, we thought nothing much has changed. We have been in bed and / or house for a long time. Quarantine is just more of the same. I, too, have had “cures” that have been a major setback but not for a year. I am sorry that you have gone through that, Fannie. I think each one of us needs to decide for oneself what is best. None of the experts should try to convince us otherwise.
I can easily understand your statements:
“I am semi-recovered and I have no intention of doing anything that could set me back to being chair bound 18 hours a day!”
“Like Lorraine said above, there are worse things than death.”
But avoiding Covid19 or its new far more contagious mutations quickly gaining ground will be utmost chalenging even with very strict isolation of yourself and the people who take care of you. The people taking care of us not getting infected and being contagious at any single time is the weak link in this aproach.
I wrote about the need for very high imunity rates to get herd immunity with this exceptionally contagious virus before and the Fauci article Cort linked says that too:
“Hard as it may be to hear, he said, he believes that it may take close to 90 percent immunity to bring the virus to a halt — almost as much as is needed to stop a measles outbreak.”
The problem is clear: the more contagious a virus is, the fewer people must be suceptible to it in order to gain herd imunity. With strong anti-vaccine groups, it is very questionable that anywhere near 90% of people will be willing to take a vaccine in plenty of regions worldwide.
Danielle worded things very well below:
“I will get the vaccine and I hope other mild to moderately ill folks will too because the of post-viral flare from covid infection will be far greater than the post-vaccine flare.”
I had bad reactions to flu vaccinations in the past too. But I am more then aware that the reactions to being infected with Covid19 !!on average!! for ME/FM/… patients may be a lot worse then the reactions to being vaccinated with it. And I am well aware that being vaccinated doesn’t give us 100% immunity to Covid19.
So the choice likely will be this:
* Wait a few months before you can even get a vaccine and see how reported side effects are. When those are far better then side effects to Covid itself, chose to have the vaccine and have high chances to experience some moderate to less moderate side effects.
* Decide to go with very strict self isolation but *still* having very high chances to get Covid19 or one of its far more contagious variants. See and experience if it brings death, something far worse then death or you’ll be very lucky to have a very modest case.
The flaw in the strategy to try and avoid a long term worsening of health by not vaccinating is to not see how big the chance is to get actual Covid19 even with very strict self isolation. It may have worked till now but recently several variants are far more contagious then the original Covid19 variant.
In plain words: all strategies to *try* and avoid getting infected with Covid19 need to be revised and sharpened up a lot in order to make a chance for this strategy to work with good chances if and when we’ll be locally hit with one of those new variants.
I agree with you. CFS/ME sufferers like myself (79 yrs old and living with this debilitating illness for over 18 years) are used to ‘lockdown’ particularly when the generalized muscular body pain is heavy (on average 3 days a week followed by 4 days less heavy – I am never pain-free). However what if the vaccine excerbates this pain and I have been advised not to take a painkiller. I was leaning towards taking this vaccine but having read the advice by CFS/ME specialists I am now inclined to wait for a couple of months before taking it.
T Allen, Agree!
I would get it tomorrow if I could. I’m far more concerned about getting Covid even with mild symptoms than any risks involved with the vaccine, especially the 2 mRNA ones.
The claims about the AstraZeneca vaccine having 90% efficacy given an alternative dosage combination is just speculation based on noisy data from a small sample.
The true efficacy of that combination is still most likely to be around 70% like the rest of the sample.
As such, for anyone who wishes to be vaccinated in the near future it is a much better idea to choose the vaccine with the highest efficacy, for which there are currently available – Pfizer and Moderna.
It is also best to be vaccinated using the dosage timing schedule recommended by the manufacturer and that was tested in phase 3 clinical trials.
Cort notes a statement made in a narrative review that noted that “longer intervals between vaccine doses usually lead to higher immune responses.”
But this is referring to mean titre levels of antibodies after a booster. The efficacy of a vaccine is not merely the quantity of antibodies in circulation, but the quality of those antibodies in neutralising an infection. The 3-4 week interval recommended by Pfizer and Moderna is perfect for optimising this quality of antibodies. As such, the second dosage in this case should not be considered a “booster” and so the statement made in the narrative review does not generalise to the timing of the two doses of COVID vaccines.
Thank you for this blog, Cort. I’m not able to read it all very carefully, but you say that “None of the current vaccines are “live vaccines””, (I assume you mean including the AstraZeneca vaccine). A bit further on Charles Lapp mentions “The Pfizer and Moderna products are not made from live virus, so they are not likely to cause flares or relapses in our PWC’s [Persons with CFS or FM]”.
I’m wondering if Dr Lapp just omitted ref. to the AZ one as it’s currently less relevant in the U.S. – I’m in the UK, (or if this actually means that the Oxford AZ vaccine is *manufactured using ‘live’ constituents, but that the finished product isn’t classed as a live vaccine – but might still potentially have a small extra risk associated with that).
Does the AZ vaccine fit into any of the ‘standard’ vaccine types I saw a chart of yesterday? (‘Live, attenuated’, ‘Inactivated/killed’, ‘Toxoid (inactivated toxin)’, ‘Subunit/conjugate’) – or is it a newer/combination design?
Since it adds a gene coding for a Coronavirus protein – would a bit of DNA constitute a subunit, or would that need to be a bit of protein, as in the part “Dr. Stein also noted that Michael Houghton from Edmonton who was awarded the Nobel prize this year for his work on HCV is taking a different approach to vaccine production than the quicker and newer mRNA approach. Houghton is using an adjuvanted subunit protein using a COVID-19 spike protein primer which has proven effective with HBV and shingles. Houghton believes his approach will produce a safer, more effective and longer lasting antibody response.”
What does the ‘adjuvanted subunit’ mean more specifically? I was thinking nearly all vaccines contained adjuvants?
It’s actually this latter aspect that concerns me a bit more atm. Although as a long term ME sufferer, I have a degree of concern re. any possible unhelpful, further destabilising effects on my likely somewhat disregulated immune system, (I’ve avoided flu shots etc so far), I’m otherwise fairly optimistic any occurrence of these probably wouldn’t be serious or long lasting in my case, and feel allergic responses would unlikely be much issue for me. (Of course, like many, I also have some concerns re. any future side effects yet to emerge, whilst being hopeful the probability of anything serious showing up a long time down the line is pretty low.)
However, potentials for more underlying harms from chemical additives isn’t something I’ve seen more carefully discussed re. Covid vaccines – it’s usually just dismissed as ‘anti-vaxxer’-type nonsense, with references to the much greater amounts of chemicals typically ingested ordinarily in food etc.
However, particularly as someone interested in Perrin Technique theories, (but unable to pursue the treatments), the potential for, even very small amounts, of possibly quite toxic chemicals reaching my central nervous system (especially brain) more readily isn’t very appealing (especially as I also have more dementia issues in my family, and my cognitive-struggles already feature at the top of my symptoms, along with heart ones).
I’ll probably opt for a vaccine at some stage as I feel my significant, restrictive ME-related cardiac problems (undiagnosed) put me at an added high risk from any Covid infection – but if I had more info on which vaccines contain what ingredients, (ideally with some ME-informed commentary advice on these), it might help me in deciding what vaccine would be best to go for.
I also meant to draw attention to Dr Lapp’s comment ““The Pfizer and Moderna products… both require two doses 21 to 28 days apart. It takes about 2-3 weeks to develop a 50% level of immunity after the first dose, and that level persists for just a few weeks so the second immunization is necessary.”
It’s not clear what he means exactly by “just a few weeks”, but I thought our UK govt. was recommending a gap of 12 weeks or so between shots, to help provide a degree of vaccine-cover for more people more quickly, so I’m not sure if this just about fits into the “few week” definition.
I don’t remember anyone here mentioning that the initial level of immunity created after the first vaccination (of Pfizer or AZ vaccines) only persists for a few weeks before dropping (albeit the sort of decrease amounts involved aren’t specified by Dr Lapp) – in fact I had the impression the post-first-vaccination protection was expected to last a long while even for the Pfizer shot. An impressive 90% level of protection after this was referenced, although I later caught something on the radio while half asleep which I think clarified this as referring to protection from *serious illness, rather than more complete protection.
I had an appt. with my primary care doc a couple of weeks ago, and I asked her about the vaccine and what she thought. I told her that I saw one contraindication was being immune compromised. And, while I’m not officially (in medical terms) immune compromised, there is an immune issue of course. So, before asking her…my gut feeling was that I would probably wait until September to get the vaccine. Interestingly, she had suggested I wait til late summer and see how people respond — and significantly how people in our patient community respond. Clearly, that is a catch-22 as most of us (I’ll just guess) are in the “wait and see category”.
I certainly don’t want to have lingering adverse consequences making the ME worse than it is. I believe that part of my road to developing ME were 2 vaccines in the late 1990’s (Hep B + MMR). So, I feel particularly wary and concerned.
At this point, I’ll just go with my gut feeling and my doctor’s advice. I think by September we are likely to know a bit more…hopefully.
I’ll be taking the vaccine (whichever is offered) asap. It was a virus (that I wasn’t vaccinated for) that gave me ME in the first place, so I wouldn’t want to risk getting worse by getting covid, let alone death. I am currently moderate severity and mostly housebound, but I have a 17 month old, so I want/need to stay as well as possible for him, but I also don’t want his development to be affected by this prolonged isolation, so the sooner the better for me.
I’ve never had an adverse resction to drugs or vaccines (inc. the flu shot), and although I have lot’s of food intolerances, I don’t think mcas is an issue for me thankfully.
The variants of the virus have not been shown to have any clinical difference as yet. There is no evidence for any alarm, yet.
This is according to Dr. Vincent Rancaniello, a virologist prof at Columbia and author of weekly podcasts about the virus on TWIV microbe. tv and the CDC and WHO. Yes, the US needs to follow up on the genetics of the viruses, do more surveillance, as the UK has been doing. Again, no clinical proof of any increase in infectiousness or severity.
Please don’t fall for the hyped-up and inaccurate news coverage of what you are terming a “mutant”. Viruses mutate all the time.
“Again, no clinical proof of any increase in infectiousness or severity.”
According to what I saw on the news and read in the newspaper, the new UK variant has reached about 80% of Covid infections in the London and England area outbreak. That outbreak is bad BTW straining the medical care system to the max. Normally there are said to be over twenty different variants to be found in genetic analysis.
If anywhere near correct, that points to this variant vastly outcompeting the others in spreading power and is very close to all the proof you need to call it a much more contagious variant.
There are still many vaccines of different mechanisms still in development!!!
The first vaccines to market may or may not be the most effective, have the least adverse effects, and be the safest. Not to mention other vaccines developed overseas. In fact according to national experts, government agencies, and the vaccine studies themselves, the first vaccines available in the US are not meant to prevent infection and spread, but rather only limit symptoms of COVID!!!
For each vaccinated disease, there are usually only 1 or 2 total vaccine products on the market. This is because: 1) Vaccine candidates are winnowed in the 10+ year development and evaluation process & study stages. 2) There is not a worldwide, sudden, simultaneous start to development of dozens of vaccine candidates. 3) After patents expire, there is no incentive to keep multiple vaccine products on the market and the health industry & research usually settles on the most effective one. 4) Health regulations and regulatory bodies control the number of products legally available via approval.
This is unprecedented that we will have, possibly over a dozen, of vaccine options to choose from to treat COVID.
Just looked up the number, according an article in the WSJ on December 22, 2020, there are “some 200 Covid-19 vaccines in development!
Source: https://www.wsj.com/articles/covid-19-vaccines-whats-coming-and-when-11598882964
I came down with Covid symptoms Feb. 29 (new research confirms there was community spread in Seattle as far back as December). Prior to covid I was able to work 40 hour weeks, and walk 3-6 miles once or twice a week if feeling well (I don’t push and avoid triggers like heat). When I got Covid it wiped me out for two months. 45 days after first symptoms I had to rest for three days after walking half a block. It’s been 9 months and I’m approaching baseline, but I’ve picked up new symptoms (Raynaud’s) and neurological symptoms are bad again. I will get the vaccine and I hope other mild to moderately ill folks will too because the of post-viral flare from covid infection will be far greater than the post-vaccine flare.
Are you taking ascorbic acid and melatonin? They helped my recovery. Doris Loh says to remain on acute dosages until symptom improvement.
https://www.evolutamente.it/new-guidelines-for-melatonin-and-ascorbic-acid-supplementation-during-covid-19-maintenance-and-infection-stages/
Thank you very much Cort for doing this blog. It’s a subject that I am very worried about having severe ME and I’m sure many others are the same. My ME started with the flu vaccine in 2013. I am now 79 bedridden and in constant pain. I think perhaps the wait and see approach may be a good idea. My husband who is my sole carer has had his first vaccine and I am mostly isolated from anyone else. I find the thought of being made worse very frightening.
Remember this vaccine has only been proven yet to reduce serious Covid cases of the vaccinated by (depending on the vaccine) 90+%.
It is hoped it will also reduce the spreading of the virus by those vaccinated quite a bit. But that is still unproven. Most likely, some fairly big subgroup of those vaccinated could still have a smaller infection and be contagious.
Hence it would be ideal if not only you but also your caregiver remain very restrictive in social contacts for as long as infection rates remain high. Vaccination of those taking care of us likely improves our chances but there is the risk that vaccinated people will consider them a bit too safe and take increasingly bigger risks.
Unfortunately, no strategy to try and avoid infection (or potential side effects from vaccination) for neither the healthy nor us is perfect.
I think wait and see is a better approach for me ( 79-year-old with 18 years on with CFS/ME). I am also in constant generalized muscular pain, on average 3 days a week in heavy pain and never pain-free. I have also been advised by the consultants who confirmed my illness (Sept 2002) to avoid painkillers unless the pain becomes unbearable. What if the vaccine adversely affects my pain? Initially, I was leaning towards taking the Pfizer vaccine but having read the advice from a number of CFS/ME experts I think it would be safer to wait and see for a couple of months and then decide.
I can fully understand those apprehensive of having the vaccine. I am among them. Almost 8 years ago I had a serious reaction to a Hepatitis vaccine prior to a trip to India. It triggered ME/CFS and left me bed bound for over a year and housebound for 6 years. I’m two years + into Dr. Pridgen’s treatment and doing a lot better now. My point is I’m very fearful of having the Covid Vaccine.
But upon reading up about exactly ‘how’ the vaccine works,(“the vaccine provoked a T-cell response within 14 days of vaccination and an antibody response within 28 days.”)
it made me think, what if the provoked T-Cell response worked to our advantage, in that it could potentially ‘reset’ our immune response and thus be beneficial. Could this happen, or am I way off track ?
Interesting thought, Karin.
I would like to hear what the experts think of this.
Interesting comment. When I get sick now with a virus my me/cfs symptoms get better although then I have to deal with the illness. Anyone else notice this? I had the same thought as you about the vaccine.
I noticed I get something that is probably similar to what you described. I can’t tell when I’m sick. I’ve had doctor’s appointmemts (just follow up appointmemts such as follow to some n lab tests), I go to the doctor’s office and they notice I have a fever of 102 degrees or more; glassy, red eyes & other virus symptoms. Of course I didn’t feel well. But this is how I often feel so I can’t tell the difference. Except for fever & subtle differences. Meanwhile, re. Covid I might or might not notice being sick until it’s too late. So I’m vowing to be extra careful & extra alert to any illness symptoms. Anybody else out there notice this kind of thing?
Steve (and anybody else feeling first better before getting sick):
Would you happen to have low morning temperature close to hypothermia (35 °C or 95 °F)? And get closer to normal body temperature short before feeling you get sick?
Hi Steve, on the whole I am much better now but when I wasn’t and had to drag myself around due to very little energy and constant exhaustion, I did feel little trickles of energy if I actually had a virus – weird but nothing new there!
I’ve also been wondering about the vaccination’s ‘reset’ possibility in ME/CFS after reading how these vaccines work!
it appears to be helping people with long covid but i’m still terrified of getting it.
Hi Cort!
Thanks again for another excellent writeup! I’d be interested in following any negative neurological outcomes that result from the various vaccines, if you have any info on that as it becomes available. My neurologist told me that these tend to show up much later down the line, but for people with neuropathies and other neurological conditions, it’s something to keep an eye on.
Thanks again!
Scientists have been working on RNA vaccines since the late 1990’s. In an article in the New Scientist, it was reported that they have “clinically tested mRNA vaccines for a wide range of infectious diseases, including rabies, influenza, and Zika. Until now, none have made it past small, early-phase clinical trials. The two SARS-CoV-2 vaccines are “by far the most advanced,” Liu tells The Scientist. “None [of the others] were as promising as what we’ve seen.”
“Despite its promise, there are challenges associated with working with mRNA. Ordinary mRNA produces only low levels of proteins, and the molecule degrades too quickly inside the body to make it suitable as a therapeutic. On top of that, RNA can trigger an immune response that’s independent of the response to the protein it encodes. “If you just inject foreign RNA into people or animals, you can induce a very serious inflammatory response,” Pardi says. He adds that this is our bodies’ defense mechanism against viruses, which can use either DNA or RNA to store their genetic information.”
https://www.the-scientist.com/news-opinion/the-promise-of-mrna-vaccines-68202
My brother and his wife, who are in their late sixties, have already received the first dose of the Moderna vaccine with no problems and have a date for the second dose. They didn’t have wait in line for hours and we live in Florida. Only time will tell if the second dose causes any problems.
I have had several serious reactions to medications/chemicals since I developed ME/CFS, so I am not planning on getting a vaccine until I know more.
I would venture to say that anyone who has had a Multiple Chemical Sensitivity component to their illness should consider that this might be a contra-indication to the RNA vaccines.
There is no doubt that It is critical that vaccines must be given to millions of people to stop this pandemic, but ME/CFS patients have already suffered for years.
The one caveat is the second part of the vaccine that boosts T-cells. I agree that this might be a beneficial treatment for some with ME/CFS who have low T-cells.
i’m finding that people with cfs/me and mcs are less likely to decide to get vaccinated.
Thank you for this blog Cort. I posted a comment earlier but it has not appeared. I became ill after a flu vaccine in 2013. My ME is now severe I am bedridden and I am in constant pain. It’s interesting to read the various comments and see that others have been made ill from vaccines. It is a big worry for those of us with that history. I am very worried that the vaccine may make me worse. I am 79 years old now and the thought of getting worse is frightening. My husband, who is my sole carer, has had his first vaccine, I am mostly isolated from anyone else so my instinct is maybe to wait for a while to get more information. However the thought of getting covid is also frightening as I would probably not survive it. Will there be more information of ME sufferers who have had the vaccine coming down the line?
I am a physician and CFS sufferer for greater than 1 year. I received the Moderna vaccine 2 weeks ago. I had very minimal side effects (injection site pain, chills one day after administration). For me, the equation and decision were easy. The known risks of the actual COVID infection, for me, pale against the risk of a mRNA spike reaction.
Thanks for sharing that Dr. Botti.
I forgot about all the doctors and health care workers with ME/CFS. I guess we need to get our polls up regarding how ME/CFS/FM patients are doing.
Good luck with your ME/CFS!
Hi there, I had covid twice , much worse the second time, I read that if you had a bad form of covid ,you only need one dose of Moderna or phizer ? Thoughts?
That’s what I heard…..I would just keep tuned to that and see if that recommendation sticks as they continue to do more testing.
Wait till you get the second on and let us know how you feel then. I think much worse.
Good luck!
Following thread.
Good to hear. Question: do you react to flu vaccine? For some of us, CFS gets worse for days/weeks after flu shot. It’ll be nice to know how people whose CFS gets worse after flu shot react to covid vaccine.
I normally get the flu shot every year, but I did not get this year. I received the flu shot in Nov 19 (without reaction), and developed CFS in Dec 19. I am not sure if there was a connection or not.
Received dose 2 Moderna last week. Had a few days of mild injection site soreness. 36 hours of fever (99.5), severe fatigue, malaise (sick feeling), chills, and GI discomfort (bloating, loose stools). The next 4-5 days I was generally more fatigued than my baseline, but I haven’t yet fallen off the cliff. I will provide an additional update next week.
I have had ME/CFS for 45 years. I got the first dose of the Moderna vaccine and the side effects were devastating. I am appreciative of Dr Sue Levine’s suggestion that those with a severe reaction to the initial vaccine dose, holdoff on the second.
Sorry to hear that LD. At the very least you have some increased immunity to the virus. I hope it was worth it. Good luck with everything.
In order to make things clear, I’ll try and clarify what I wrote before (as Issie thinks I might have some influence over here to shift patients choices):
* Both Issie and I experienced serious downsides of previous vaccinations.
* Part of Issie’s start of poor health coincided with having a vaccine at young age.
* Issie has since proven to have a diagnosed genetic weakness to produce IgG antibodies.
* IMO IgG antibodies are but one (major) route to train immunity against a virus, but an important one. The inability to make sufficient enough IgG antibodies makes relying on vaccination a questionable strategy for her while side effects are likely, as it is unknown how much of the remainder of her imune system can be trained by vaccination.
* Far more contagious Covid variants however have been proven to exist for example in the UK, and the situation is escalating quickly.
* Such hugely contagious variants very likely will make self isolation and good hygiene quite a bit less effective in protecting against Covid infection then it was up till now.
* Complete self isolation seeing no other living person including any family members or caregivers up close still will remain a solid barrier against infection.
* Very few of us will however be able to live entirely alone without outside help and have in house family members isolating as strict to not see and meet anyone up close nor going to shops, schools or work.
* The effectiveness of vaccines to prevent people having very low chances of being contagious remains to be proven, so having the few people we meet being vaccinated is not as of yet a proven solid strategy either.
* As more and more people get vaccinated, more and more people will likely become less strict in hygiene and self isolation, creating a possible strong window of opportunity for the virus to reach unsuspecting people.
* All people vulnerable to the side effects of Covid vaccination very likely are also extra vulnerable to the damaging effects of Covid infections, be it a strong worsening of health or death.
=> So I do and can not tell other people what to do: to vaccinate or not. However I would like to point out that:
* Try and separate facts from fear. Allow yourself to be critical including of the values of vaccination, but try and always see the potential risks and gravity of both choices. Often such choice will be shifted by personal situation and medical history.
* Vaccination can and likely willl cause side effects in many people with ME. The severity as of now is difficult to estimate. Vaccination will never give 100% protection so even when chosing to get vaccinated one should still remain careful as long as this pandemic rages.
* With very fast spreading variants like the one that has taken the UK in a rush, the success of self isolation to stave off Covid infection is IMO a poor guarantee for safety in the coming year. Vaccination of close contacts hasn’t proven yet to be able to protect the weak unvaccinated yet. For the comming year, I see good reasons for self isolation to require to have zero contact with the outside world safe for deliveries at the doorstep. Anyone having family living under the same roof that does not take such severe measures or depending on the help of an outside caregiver must realize that there are severe weaknesses in this safety strategy.
=> So IMO the two big choices remain to either go for a vaccine for yourself and hope all those around you do the same while still being restrictive in contacts and keeping up good hygiene or to have near zero contact with the outside world and have no in house family members nor caregivers not being and remaining very restrictive in their contacts and keeping up good hygiene for as long as needed. For most of us that choice will only start to be of consequence within a few months as we wont have access to the vaccine till then. That leaves time to await and study new elements as much as possible.
Keep safe and safe from a bad turn of ME/FM/POTS/…
Hi djurgen,
Thank you for your information and extensive research.
I believe you’ve missed one important option in your “two choices”: for lack of a better way to express it, I’ll call it ‘immunity strengthening’ (not exactly what I want to say, but brain fog atm is leaving me without ability to adequately describe it otherwise 🙁 ).
I believe my husband and I both have likely had – and survived – COVID. Last April, during the first serious lockdown, my husband had to go to the ER (ahem – his first use of my mandolin slicer will also be his last…). We had been hypervigilant about following all the COVID protocols and protection, including gloves, sanitizers and medical grade masks, sterilizing anything and everything, not bringing any clothing indoors that had been used outside, etc…. And we intentionally went to a 1st-rate hospital that wasn’t taking COVID patients, and the hospital was hypervigilant about protocols. Nevertheless, approx. 1 week or so after his visit he developed a pretty significant flu-like illness, and two or three days afterward I developed the same. I don’t remember the details now, but it lasted about 10 days (a bit longer and more severe symptoms for me than for him). We were terrified at the time. I’m also one of the blood types which is most likely to catch COVID, btw – again something I learned afterward.
However, I had been taking high doses of quercitin and vitamin C (amongst other things) for several months at that point for my MCAS along with zinc, which I now understand is one of the recommended treatments/preventatives for COVID. I understand (from somewhere, can’t find the source atm) that quercitin is somewhat related to hydroxychloroquine (or perhaps just to quinine?), which has been recommended for treatment against viruses – COVID in particular.
I was definitely ill, but once the virus (no idea if actually COVID, but the timing and symptoms were right) started to clear it left my system completely, and although I’m not in any way healthy I fairly quickly got back to baseline, within a couple of weeks. I can’t prove anything, but believe that the quercitin/vitamin c/zinc combo, along with lots of home-made organic chicken soup and ginger tea, made a real difference.
It was just happenstance that I happened to be using those treatments at the time, but using these natural remedies (or at least having them stocked up and available) is something that ME/CFS patients could do to help mitigate the virus’ impact should they get it. And they are all very commonly and safely used by ME/CFS patients, especially those with MCAS (who are advised not to get the vaccine).
I also keep at least two organic chicken carcasses in my freezer, along with onions & herbs, for times when I might catch something and can’t get to the grocery store, and had previously made sure we (and my 90 year old FIL who we often shop for) had a good supply of emergency food. That made a huge difference for us, and meant we (and my FIL) could easily hunker down and didn’t have to go out and expose anyone until we were well over it.
Lots of people have had, and recovered from, COVID, many without even being aware of it, so catching it is generally not fatal, or even dire – perhaps even for those of us with ME/CFS. I think preparation and mitigation is something that could help a lot of people and help allay some fears.
I must agree, trying to be in optimal state sure helps.
I ignored it by both forgetting it and by not seeing it shift the choice to vaccinate or not to in either direction. It is a good (but not always easy) way to improve the chances of a good enough outcome whatever choice you make.
Trying to further work on improving basic health is part of the plan, but I’d say it is not either to vaccinate or to not vaccinate or to forget about that choice and just be healthy. I wish :-).
Thank you Anne. Great post. No one speaks about the 99% rate of recovery from the virus that was mentioned early on. Now it’s all about dying from it.
Maybe I forgot a third strategic option, as I nor most patients will have that choice:
For people strongly suspecting having had Covid, do an antibody test. If that is positive, try and learn how well those natural antibodies protect against a bad case of Covid. And try and find out what that may tell about chances of a new infection being mild or severe if it hits you again. I think that are all unknowns so far but it might be interesting to see if new info pops up.
As to natural antibodies often vanishing from the body over time: one can do regular blood draws to see if they are still there and how high they still are.
It’s hard to say how sound such strategy is. It might be an option that is worth considering for the minority of us already exposed (!!after consulting with a good doctor!!) and it might buy ME/FM/… patients some time to better evaluate how other developments are going.
Hi dejurgen
There are many people that got COVID for the 2nd time, and they say usually the 2nd time is worse.
So I don’t know
On the survey I put that I wasn’t really concerned about getting corona virus and that I have only been somewhat cautious about precautions. I just want to add the context for this.
I live in a small country town in Australia where we have had no cases for months, so the probability of catching it is quite low. If I lived in a hotspot I may have a different opinion. Also I doubt if I will be travelling anywhere soon.
I had COVID in March 2020 and am yet to get back to baseline, particularly with re to lung, heart and brain (cognitive/memory). I know I could not ‘do’ COVID again. I have nothing left – am utterly depleted. Even so, am unlikely to seek a vaccination for myself. Am not an ‘anti-vaxxer’ by any stretch. But am living with the repercussions of a life altering drug reaction to lamotrigine, prescribed off label for sodium channelopathy 15 years ago. I am now very wary with respect to all pharmaceuticals. I can draw a definite line separating the life I had before taking lamotrigine (1 single baby dose) and my life after lamotrigine. I don’t have the luxury of another risk. The price paid, when things go wrong, is a high one. And doctors self-protect in defensive medicine mode, with no proper exploration or resolution for the patient (me).
Here’s a perspective from someone who will definitely take a vaccine as soon as I can. I’ve had CFS for 24 years (mostly housebound for last few years), originally triggered by a chest infection, and with multiple relapses over those years also triggered by chest infections or just getting two colds in a row. I’ve also got an IgG1 subclass deficiency (explaining the propensity to chest infections). I have untreatable high blood pressure. I’ve never had a bad reaction to a vaccine, including yearly flu vaccine, and the vaccines seem to work well enough in me to help prevent me catching things. I only have mild allergies and don’t have MCAS.
With this particular history I think Covid would likely kill me or leave me bedbound long term, and that, for me, the risk from getting Covid much outweighs the risk from getting vaccinated.
I totally agree. Covid-19 vs vaccine. Vaccine!!!
These doctors recommending vaccines are ignoring the efficacy of Ivermectin against Covid-19. Dr.Andrew Hill of Liverpool University is evaluating Ivermectin on behalf of the WHO and his interim analysis suggests that Ivermectin is a potent anti-viral for both prophylaxis and in clinical settings. After 3 more large trials publish their results in January he will be in a position to make a recommendation on Ivermectin to the WHO.
The scientists who discovered Ivermectin won the Nobel prize in 2015 for their work. Ivermectin is listed by the WHO as an essential medicine. Over 3.7 billion doses have been given to hundreds of millions of people over the last 25 years. Now that is a safety profile that reassures me.
The doctors mentioned in this article are also ignoring potent anti-virals such as vitamin C and D. There is an extensive body of evidence supporting their efficacy as anti-virals yet it is ignored by a medical establishment totally beholden to big pharma and its agenda of expensive medicines whose safety is questionable.
Trial Site News is carrying an article today, ‘After Rushed Development, Close to Half of Healthcare Workers Refusing COVID-19 Vaccines’.
https://trialsitenews.com/after-rushed-development-close-to-half-of-healthcare-workers-refusing-covid-19-vaccines/?unapproved=48383&moderation-hash=937097f94d9f9492d4e041b7b05dfadd#comment-48383
It is no great surprise. The medical establishment have lied to the public on so many occasions. Remember earlier this year when the public were told not to wear masks, indeed that wearing masks might be harmful to members of the public.
I am sorry but the reassuring noises from the doctors mentioned in the article does not reassure me. Quite the opposite. It reinforces my determination not to have a vaccine. How many people with ME took part in the vaccine trials? I’ll bet not many if any.
I agree with you that doctors appear to be ignoring antivirals such as Vitamin C & Vitamin D. But to criticize them as “medical establishment totally beholden to big pharma and its agenda of expensive medicines whose safety is questionable” is unfair. It can be one’s opinion but without court standard factual backing can it be taken seriously, it is debatable. I am 79 yrs old and suffering from CFS/ME since Sept 2002 when it was confirmed by the consultants at the Kingston Hospital London after 3 months of extensive investigation. They were very honest and had told me that they do not have a treatment for this debilitating illness. Further, they also suggested that I should use any treatment that works for me, and that included homeopathic and herbal among others. I chose homeopathy. I am happy to confirm that it has worked for me. Initially, it increased my 1-2 hours broken sleep to 5-6 hours sleep. It did take a long time (over 6 months) by our modern medical standards. But I did not have to use sleeping pills which have side effects. I also noticed that they have a different approach. It is more holistic. Later the homeopathic consultant advised me to boost my immune system to prevent frequent colds and flu bouts. He suggested that I should take a cup of Echinacea tea, Vitamin C, Vitamin D, Zinc on a daily basis and monitor any improvement. After about 7-8 months of treatment, I noticed a visible change. and within 2 years I was free of colds and flu which had bothered me for over 20 years in the past.. This was over 10 years ago. I no longer take any flu jab, and in the last 8 years even with my advanced age (71-79), I did not have a single bout of cold or flu. I am taking the 3 vitamins and the Echanicea tea on a daily basis to keep my immune system well boosted. I trust it is helpful.
I just received an email from my local ME/CFS support group which had a link to this video on who is more likely to get Covid Long Hauler symptoms. Although this is a study based on anecdotal information, I think it is more informative than many of the published studies I have read in the 36 years I have had ME/CFS.
The groups most at risk were those who previously had allergies, asthma, eczema and the strongest correlation was for people with Post Viral Syndromes.
https://www.youtube.com/watch?v=hnPvw20iH80&authuser=0
I’ve been following this guy too. He’s not a medical researcher however with his training at Oxford University he knows how to do studies, and dig deep. A very smart guy with lots of interesting videos on long haulers
“…Researchers at Yale University found that Covid-19 patients had large numbers of misguided antibodies in their blood that targeted the organs, tissues and the immune system itself, rather than fighting off the invading virus..”
“…The Covid-19 patients had more antibodies that had turned on them than people with lupus, an autoimmune disease caused by similar wayward antibodies…..”
https://www.theguardian.com/science/2020/dec/13/autoantibodies-may-be-driving-severe-covid-cases-study-shows
My question:
If wayward antibodies are found in a certain % of those exposed to Coronavirus, can/will a vaccine mediated immune response to the spike protein on coronavirus also cause friendly fire/auto immunity?
I wondered about that too, Jessica.
Just to be clear Covid long hauler is used for post covid infections not post vaccinations.
I am very interested in reading this article, thank you for posting it.
vaccine? LOL
HELL NO
Covid19 has never even been isolated.
My understanding is that Cov19 has never been isolated; have seen dozens of articles about this, many of them from the researcher Jon Rappoport.
If no isolated virus yet exists, then how in the world can an effective, safe vaccine even be manufactured?????
Just as important, why are not all doctors and patients aware of this? And who made it possible for this info to not be universally known so that people can make informed choices? It has been repeatedly suggested that the money, patent and investor trail must be followed for our and our children’s safely.
I have some study links and anecdotal personal experience and advice on the flu shot for those with ME/CFS.
Firstly from what I know it’s rare to get as sick as I did from a vaccine.
I have had ME/CFS for 31 years after a severe influenza infection
The first 2 years were pretty bad, fully bedridden and unwell. The following 3 years the disease was moderate. After that I slowly started improving to mild ME/CFS , but I noticed that influenza would knock me back for about 8 weeks.
So I started taking the flu vaccine. At the time I never noticed any major effects
As time went on I kept having the shot. Then nearly six years ago I had the shot and that year I had a significant drop in my energy levels (no link at this stage, but wait)
So the following year just incase I asked my doctor for the equivalent of the flu vaccine that babies have which is half an adult dose and four weeks later another half dose
I only ever had one of those half doses because I was bedridden by the end of that first week with fatigue so severe I had to crawl to the toilet and hardly could wash myself, that lasted a year, before a slight improvement, but unfortunately I have remained at a severely worsened level ever since. i.e. very unwell
That was nearly 5 years ago I and still spend 20 to 24 hours a day lying horizontal. And having reoccurring flu like symptoms
My girlfriend remembered, that year before I had worsened (6 years ago when I had a significant drop in my energy levels) we were on holiday she checked told me the dates and I checked back to when I had the flu shot , it was only 10 days after the flu shot. I’d been feeling unwell about a few days prior to that holiday (so about a week after the flu shot)
This made me remember that nearly every autumn I was strangely unwell, more than my normal ME/CFS. This would continue through at least half the winter. I always put it down to the seasonal change. But after severely worsening from the last 2 flu shots I actually think that it was the flu shot every Autumn causing the worsening.
I believe my ME/CFS body cannot handle the ‘adjuvant’ in a flu shot.
I must admit that I was told 31 years ago that the flu shot isn’t that good for ME/CFS patients.
It’s reasonably well known that the Influenza MMR and HEP B vaccine can worsen ME/CFS. I see in Cort’s article a doctor said they are live viral vaccines so maybe that’s the reason. Personally I think it’s the adjuvant in the vaccine that is too aggressive for some ME/CFS sufferers.
I know that my complaint to New Zealand’s medical safety authority was not accepted as valid because their letter blamed my ME/CFS. This means it’s not actually being registered as an ‘adverse reaction’. So the numbers could be much higher
So if you’ve had previous vaccines and been ok chances are you will be the same.
However I’m thinking 7 days after the first shot I’ll take a short course of steroids to help suppress the out off control ME/CFS immune response as described below in the study. Then do the same after 7 days of the second shot, and take more steroids. As the vaccine makers say 7 days after the second shot full antibody protection has occurred. So taking steroids ‘after‘ that shouldn’t interfere with that good initial immune response. With ME/CFS it’s after that period that we need to suppress immune activity.
Below a flu vaccine trial on ME/CFS patients… (Note other studies didn’t find this)
——————
-International Journal of Clinical Medicine-
The Effects of Influenza Vaccination on Immune Function in Patients with Myalgic Encephalomyelitis
Excerpt: The majority of the cytokines that were significantly increased in the CFS/ME patients were Th1 cytokines including IFN-γ and TNF-α, IL-17 was also increased. IL-4 was the only Th2 cytokine that was increased in the CFS/ME patients compared to controls. Hence, it can be deduced that influenza vaccines may increase the production of both pro and anti-inflammatory cytokines in the CFS/ME patients. This is consistent with the observation that CFS/ME patients have background dysregulation of their immune system and correlates with the clinically reported worsening of symptoms.
to save time just scroll to read the ‘Discussion’ and ‘Conclusion”
https://file.scirp.org/Html/17-2100362_24744.htm
——————
Predicting Post Vaccination Autoimmunity: Who might be at risk?
https://pubmed.ncbi.nlm.nih.gov/25277820/
Would it be a good idea to use this poll to understand more about the people with CFS/ME who have had the vaccine and what side effects they have? I am a healthcare worker (and have CFS/ME, luckily fairly mildly) in the Uk so am lucky enough to have had my first dose of vaccine (without side effect), and I know there are lots of healthcare workers with long covid who will be vaccinated soon. I’d like to be able to share my experience and others to help people make an informed decision about taking the vaccine.
That’s good to hear. Was that Pfizer vaccine that you received?
My CFS often gets worse and I struggle more than usual for a week or two after the flu shot. It’s similar to PEM.
what are the long term effects do you all know like the vaccin for chicken pox in older people it produce the singles and people have to be vaccinated against that so this vaccin will it produce another king of illness
As far as I’m aware the chickenpox vaccine doesn’t cause or produce shingles, It’s been suggested that it wasn’t strong enough to give a full immune effect in some people so when the shingles virus eventually comes into the body, the immune effect isn’t as strong either. I couldn’t find much evidence of this concept happening apart from a book full of other nonsense so wasn’t credible.
It’s also important to note that plenty of people who’ve had chickenpox naturally also later had shingles anyway.
Either way I’d like to see evidence of what you said as apart from that poorly written book.! I wonder if that’s where these types of rumours start.
Although I’d never say it could never happen. If it does happen the numbers will be tiny otherwise it would be well known
My husband’s best friend developed shingles after a shingles shot. This went on to postherpetic neuralgia and his health has never been the same. This was an older shingles vaccine, not the newer version. Coincidence, maybe.
Everyone has different risk factors. An individual’s risk cannot be compared entirely to risk for society at large. Most medical advice in regards to vaccines is based on what is best for society at large.
The risk to someone with ME is different than someone with no history of autoimmunity. The risk to an ICU nurse is different than someone working remotely who can afford insta-cart.
The risk evaluation for an ME patient whose disease was triggered or worsened by a prior vaccine is different than a high functioning ME patient who has tolerated vaccines, who believes their problems were triggered by, say, Epstein Barr and not a vaccine.
If you have ME, is it wise to follow the advice for “society at large?”
I agree, although influenza triggered my ME but years of flu shots, eventually a flu shot severely worsened me. I mentioned in a comment above that I’d looked back and noticed that every autumn I was often unwell for a few months. I realise now it was my reaction to the flu shot
But I agree that those that haven’t had problems with other vaccines should be ok
Scary times for ME sufferers who have had vaccine problems though.
First of all, these vaccines are NOT yet tested on MECFS patients. I know that because I applied for Pfizer trial last year and was rejected when I mentioned my MECFS.
That said, I think every patient will have to evaluate the benefit/risk on their own. I for one, do plan to take the shot. Travelling is one thing that has helped me improve my CFS, and this covid thing has taken that away from me. I intend to get it back this year. I’ll report as soon as I get the shot. If you are not sure, you may want to wait till I report. 🙂
I do react to flu shots badly though. I struggled for 5 days last year and for 2 weeks in 2015. As for the cause, I’ll have to disagree with Dr. Lapp: I think it’s got to do with the low grade inflammation that last for days after the flu shot, not the live/inactivated virus. (https://pubmed.ncbi.nlm.nih.gov/15976761/) . Given that the covid vaccine is more inflammatory than flu shots, I think there is definitely more than zero chance that I’ll react or worse.
my new cfs doc told me to never travel. she said that is the worst thing for a cfs/me patient to do.
There is one common fault with most of the human species. Not all but most ,and that is to say. I WAS WRONG! Even as evidence mounts those in high position within the medical community usually Professors will cling on and others refuse to change for monetary reasons. This has been one of the main obstacles to advancement in diagnosis and treatment of ME/CFS. As for experts in CFS the only ones that know what they are talking about are the people with CFS. I thought doctors when in medical school were told listen to the patient and he will give you the diagnosis, I have yet to find one. I will definitely not be taking the vaccine as I have little faith in doctors and pharmaceutical industry as over the years the regulations have changed to self regulate and the need for ever increasing profits is the main driver for pharmaceutical industry. While on the subject of so called experts in CFS a couple come to mind. From Australia there is Andrew Loyd who promoted CBT and GET which has been discredited and possibly hurt a lot of people. But is still one of the main experts of CFS in Australia. Also there is Sonia Marshall whose research into Rbc deformability could have been performed wrong and stopped research into this for 10yr until recently confirmed by Ron Davis that problems in Rbc deformability exist. Sonia Marshall is one of the main recipients of $1.4 millions of the $3.0 millions total research money from the Australian Govt, that amount says a lot about how concerned they are about CFS. I did get in touch with the Griffith university (Sonia Marshall) and asked about the research and told the girl about my pathology tests confirming active virus or viruses and was told I didn’t qualify as I had a active virus. Also the main body in Australia for information on CFS is called EMERGE .very hard to get any useful information from. They are in the process of joining with Deacon university in a 5yr study on mitochondria in CFS. Seems to me they always looking in the wrong places . Mitochondria end result of other symptoms like viruses,immune response,inflammation,blood flow. Really hard to trust any of the experts, only your fellow CFS sufferers.
…..Well, I still don’t know what I’ll do, but it’s nice to communicate with other people who actually understand the dilemma.
“There is a condition known as disease enhancement due to pathogenic priming, and this was discovered in vaccinated animals and past vaccine safety studies when they did conduct vaccine safety studies on animals on coronavirus vaccines, where vaccinated animals got more serious disease after being vaccinated, and then when they acquired an infection from the wild type vaccine, more animals got serious infections, serious conditions, and more animals died.”
– Dr. James Lyons-Weiler
I’d suggest anyone on here over 60, considering taking any of the versions of this vaccine, research “pathogenic priming” before making your decision, as past research has shown pathogenic priming is more prevalent in older adults. I have to wonder if the immunity status of ME/CFS patients puts us in a similar risk category?
Also, males and females of child-bearing years should pay attention to the published warnings on some vaccines re: reduced fertility, which also has not been tested due to the short time-frame, but which some scientists are warning can possibly persist for generations. Some experts are saying this has been debunked, but will admit that the testing period is too short to know definitively one way or another.
And be aware that some (perhaps all?) of the COVID vaccines were given special approval to skip one or more levels of required safety testing – in effect making early vaccine recipients test subjects.
For those who plan on getting the vaccine, it would be prudent to understand which vaccine versions were given approval to skip testing steps, exactly what testing was skipped, and what the implications of those skipped tests are, and to choose accordingly. There may be some vaccines which are safer for us than others.
One of the tests which has been skipped (universally?) is animal testing over the long-term – which is where the problems with pathogenic priming have been identified. This, combined with most countries legislating that vaccine producers will have no liability for harms, should concern everyone.
Here are some references for consideration (not an endorsement by me, but I think it’s important for people to be aware):
Pathogenic Priming
– https://dryburgh.com/james-lyons-weiler-coronavirus-vaccine-safety-warning/ (Video & transcript)
– https://nexusnewsfeed.com/article/health-healing/pfizer-covid-vaccine-trial-shows-alarming-evidence-of-pathogenic-priming-in-older-adults/
– https://pubmed.ncbi.nlm.nih.gov/32292901/
“Researchers rush to test coronavirus vaccine in people without knowing how well it works in animals”: https://www.statnews.com/2020/03/11/researchers-rush-to-start-moderna-coronavirus-vaccine-trial-without-usual-animal-testing/
Liability immunity (U.S.A.):
“ACTION: Notice of Declaration under the Public Readiness and Emergency Preparedness Act for medical countermeasures against COVID-19.
SUMMARY: The Secretary is issuing this Declaration pursuant to section 319F-3 of the Public Health Service Act (42 U.S.C. 247d-6d) to provide liability immunity for activities related to medical countermeasures against COVID-19. ”
– https://www.phe.gov/Preparedness/legal/prepact/Pages/COVID19.aspx
CNN: “Past vaccine disasters show why rushing a coronavirus vaccine now would be ‘colossally stupid'”: https://www.cnn.com/2020/09/01/health/eua-coronavirus-vaccine-history/index.html
Cort, amazing work here, thanks for the summary. Is there a typo in the sidebar with a “not” missing so that “but in people” should be “but not in people”?
The vaccines were tested in a wide range of ages and health conditions (but in people with systemic autoimmune diseases such as lupus, Sjogren’s Syndrome, multiple sclerosis or rheumatoid arthritis.
Whoops! Thanks John – that was an important “not” (lol).
Cort,
why are you not talking about Ivermectin as a treatment for Covid-19?
On 6 January Professor Paul Marik, Dr.Pierre Kory of the FLCCC and Dr.Andrew Hill appeared before the National Institutes of Health COVID-19 Treatment Guidelines Panel.
The FLCC press release of 7/1/21 explains what happened:
“The doctors explained to the panel that numerous clinical studies—including peer-reviewed randomized controlled trials—showed large magnitude benefits of ivermectin in prophylaxis,
early treatment and also in late-stage disease. Taken together, the doctors reported that the dozens of clinical trials that have now emerged from around the world are substantial enough to
reliably assess clinical efficacy.
Specifically, the FLCCC physicians and Dr. Hill presented data from 18 randomized controlled trials that included over 2,100 patients. The trial results demonstrated that ivermectin produces faster viral clearance, faster time to hospital discharge, faster time to clinical recovery, and a 75% reduction in mortality rates.
The NIH panel signaled their intention to consider the data and update their current recommendation by early February. ”
Surely, this important development together with the WHO review on Ivermectin by Dr.Hill warrants coverage?
Ivermectin could help prevent the thousands of deaths happening every day.
Here’s another relevant paper on the vaccine
https://www.pandata.org/wp-content/uploads/PANDAArticles-COVID-19-the-vaccine-and-the-betrayal-of-sub-Saharan-Africa.pdf?fbclid=IwAR0imqIb9nKWVzs6duJb5pqyqzpHuWXOTRC_KUBkHrh5WBOr6iWzEIcITAg
The biggest risk factors for death by Covid are being over 70 (people in their mid 80s are most at risk) followed by obesity, heart disease and diabetes. No mention of MECFS anywhere on the full list.
These vaccines are rushed and/or experimental which should raise major red flags for doctors. They’ve also not been tested on animals. The first group of people taking them are essentially taking part in a clinical trial for which there is no compensation if harmed. Remember the rushed vaccine in 2010 for swine flu which left many with narcolepsy? Those people were compensated. You won’t be because governments have indemnified big pharma this time. The risk is all yours.
So you need to read up well on the potential risks so that you are giving informed consent These are a good start…
https://2020news.de/en/dr-wodarg-and-dr-yeadon-request-a-stop-of-all-corona-vaccination-studies-and-call-for-co-signing-the-petition/?fbclid=IwAR1hhwZ6-AC7lPEm-CEsPvzpDOq4DIzE9xVIQKA0AS-olWvcz4zVHZrC4rk
https://www.bmj.com/content/371/bmj.m4347/rr-4?fbclid=IwAR0VxAsxNWAmpq0V5ZIeC4XVOzd7NhVD9tp5r56-5xdN0XEny8dSAw6bGk4
https://www.nytimes.com/2020/09/19/health/astrazeneca-vaccine-safety-blueprints.html
https://www.nakedcapitalism.com/2020/12/an-internal-medicine-doctor-and-his-peers-read-the-pfizer-vaccine-study-and-see-red-flags.html?fbclid=IwAR2WawYJVhzTSAwj0jxPBuR9LP1myHPFPRnYV48kEpn2REUXpc7Bhv7kbrw
I don’t think it’s as good idea to get the Corona Virus vaccination if you have Chronic Fatigue Syndrome, Multiple Chemical Sensitivity, allergies of many sorts (foods, mold, dust), any especially ANY virus that caused a viral syndrome (CFS). It’s not safe to inject this into our bloodstream when we are auto-immune, faulty immune system of any sorts (hyper or hypo), or a person who reacts to medications and chemicals.
I’d rather be a hermit and avoid people, places and things than get a vaccination that can put us in further into being disabled and extremely very sick!
Every time i got a flare-up of CFS, it took me YEARS to get back to where i can function only semi-okay. It’s not worth the risk, especially after reading the comments above!!!
As an Edinburgh ”MD” & naturopath training in CFS, Ms Sandra Miarecki’s post on 3rd Jan makes good sense ;- whether (patentable) vaccine programmes help or not in long term, one needs to be cognisant of our natural immunity, & that vaccines not necessarily compatible with our long-evolved natural survival processes, with unknown ingredients & potential ‘sequelae’ awaiting us.
Mixing a compromised immune-status ME/CFS population cohort, with an immune-altering ‘device’,(as classified by your CDC) invites clinical caution, & circumspection, esp. as animals in post-coronavirus trials showed (significant) auto-immunities; one does not need ”scientific” trials to prove zinc, selenium, vit.C etc work… if we didn’t have them we wouldn’t be here, & well established in all scientific literature, that we are already so deficient.
Cort – magnificent as always. The comments from Nancy alone are transformationally useful to patients who don’t themselves have access to good advice. Hope you are faring OK ishly with your health.
Thanks Vlad
Thanks for this Cort! If you do follow up interviews, can you find out if the practitioners have a view about one type of vaccine over another for ME/CFS people (eg re: mRNA vs weakened live virus)
Will do.
Hi dejurgen, here is a doctor mike hansen on you tube that discusses who dies and gets very sick form covid!, temple university did the studies. I would be interested in your feedback for all please?? On another note I have read or heard recently that some reserches found drug or something or procedure withdrawing blood and supplying increasing nk cells and helping them function to kill variety of cancers and covid . Not sure if you know anything about this??? Thanks very much last question I have severe mecfs with cancers and dysautonimia. My lungs just came back inlarged is there anything you may recommend please? Thanks again
Hi Jimmy,
Let me first make this clear: I have NO medical eductation whatsoever. So I am in no position to answer most of those questions. I’ll try and talk very general things only therefore.
The study you mention and the doctor’s presentation is interesting. Note however that those precise diagnostic criteria are when blood is taken early after hospitalisation. It seems to show how the imune system reacts once infected with Covid19 bad enough to need hospitalisation. So most of it seems not very helpfull for predicting individual risk when not having Covid19 yet.
I know too few about that procedure of drawing blood and supplying increasing nk cells to be of any use.
When it comes to having the combo ME/CFS and dysautonomia alone, I think it can be interesting to not “provoke” the imune system “needlesly”. That means that observing and trying to determine if you suffer from things like MCAS or have hidden food intolerances is IMO quite important here.
I myself am intolerant to so many foods that I long into the journey of this disease thought that I had none. They react delayed and I could leave out plenty of foods without seeing any change. Every “needless” triggering of the imune system creates risk for auto imunity and that is often associated with dysautonomia in recent research.
“Needless” triggering the imune system also *IMO* sort of wastes part of its strength when it is needed for example for figthing cancers. That is just a guesstimate of me, as the imune system is part of fighting *many* cancers.
“Needless” triggering the imune system by certain foods (or exerting too much!) for example *might* also be some hard to estimate risk in “upregulating” the imune system too much. That *might* make ones imune system less able to deal well and proportional to new threads like the Covid19 you mention. Note emphasis on *might*. But as pacing and reducing foods you are intolerant too is a general good idea in ME/CFS, now may be as good a time as ever to try and pay more attention to it. The difficult path in finding those if you did not already is to do so and keep having a sufficiently balanced diet at the same time.
READ
I was diagnosed with multiple sclerosis 1 month after I turned 50. My grandma is 96 and had it since she was in her 20s. I have been on MS HERBAL FORMULA , the first TWO MONTHS was daily and now I am on 3 times a week. It has made a tremendous difference for me. The fatigue never gets to me again.
can you put a link to the formula plz
Just an FYI to those wondering. I received the first dose of the Pfizer vaccine yesterday and have had no issues at all aside from a tiny bit of swelling and pain at the injection site which is normal. I didn’t get great sleep last night and I feel fine today.
I’ve had CFS since 1999 and since 2001 have recovered to about 90%. I just need to limit the inflammation and physical exertion or else I get the fatigue, brain fog, and tiredness. So I may be at a better place than some of you. I wanted to give you all a data point with which to make your decision. I know I was apprehensive about getting it without any data from patients with CFS. I have received the flu vaccine each of the last two years without any incident.
If any adverse effects happen after my second dose I will post back up and let you all know. If you don’t see me post again you should feel confident that I had no issues.
I just received an article from Debbie Moon from her Blog site Genetic Lifehacks. I asked her if I could post a link to the article she wrote considering genetics with known autoimmune issues and possible prior family or individual problems with vaccines.
(With me having had a reaction to vaccines and MCAS issues, my doc told me NOT to get a vaccine.) But for others the question is still there. I felt this was a good article. For me, it confirmed things and gave me more WHYs. (I am a member and could check my alleles.)
Thanks Debbie for allowing me to post a link to your article. I find all your blogs to be educational and I really enjoy them. Helps me to sort out more WHYs genetically, in the search for even more Purple Bandaids. ?
https://www.geneticlifehacks.com/vaccines-genetics-and-autoimmune-diseases-a-roundup-of-the-research/
Hi Cort —
In “The Gist” section you accidentally omitted “not” tested on folks with autoimmune conditions. Know you’ll want to correct that. If I weren’t impoverished I’d be sending you money believe me. Keep up the incredible work you do Thanks p.s. You can erase this comment
I have had ME/CFS since 1987. I have had periods of time where I have been completely bedridden, and periods of time where I can function fairly well within my home. I am now 72 years old. I have had my first dose of vaccine (Pfizer), and prepared myself with some of Dr. Klimas’s suggestions. I made sure I got two previous nights of good sleep, prior to taking the vaccine; I took Co-Q-10, Zinc, and included antioxidants in my diet prior to taking the vaccine; I took an antihistamine 1 hour prior to taking the vaccine. I had a sore arm at the injection site for two days (worst the first day, better the second day, and by the third day I slept on my arm without any discomfort). About 4 hrs. after the vaccine I developed muscle ache in my back, starting out across my shoulder blades, and moving down my back for about the next two hours. Lying flat in bed helped relieve the discomfort. I avoided taking Tylenol out of personal choice. The back achiness remained for three days. Now gone. I have had a little more fatigue, but I can feel it lessening a little more every day (shot was taken 4 days ago). I will report back after I receive 2nd dose. Everyone has to consider their own situation. I decided I would rather suffer through reaction to the vaccine than be infected with COVID-19. I only weigh 102 pounds, with compromised immune system and did not feel confident that i would make it through a fight against this vicious virus. So this was my choice. Best wishes to all for your decisions.
Thank you very much for this article Cort and everyone’s comments. Due to an adverse reaction to H1N1 flu vaccine and the subsequent decline in my health span, I will not be taking any COVID vaccine at this point.
I am curious if anyone in this community has had their ADAMTS13 activity level and antibody levels measured. I am wondering if ADAMTS13 insufficiency/antibody is related to any of the adverse reactions to vaccines, rbc findings or pain flares in CFS/ME/FM.
This is the preprint I found that triggered my question: https://search.bvsalud.org/global-literature-on-novel-coronavirus-2019-ncov/resource/en/ppmedrxiv-20177824
I visit mom in the nursing home and took first dosage of Pfeizer vaccine and 10 days later still experiencing tightness in my jaw and some taste loss, numb tongue feeling. I had mild itching for 2 days also, something I have experienced before. No changes in energy (what energy!). I’m nervous about getting the 2nd dosage and probably won’t. Feeling like my life is a continuing horror story made worse with mom in a nursing home.
Robin, I haven’t had the ADAMTS13 tested, but have had VW tested that the article speaks of. I have some markers of issues with VW with Factor 8 and Collagen Binding. These cause problems with blood being too thick. So there possibly may be a connection with me here. I keep my blood thinner with herbs and enzymes.
Issie, Thank you. I have my direct to consumer whole exome data and my ADAMTS13 data caught my eye years ago. I have episodes of bruising that seem to co-occur with my cervicogenic pain flares. I haven’t had any coagulation studies, I’ve always attributed the bruising to my EDs, or a mast cell process. But now I’m wondering if ADAMTS13 is in the crosstalk. I’m curious what your favorite herbs and enzymes are…
@Robin, I use many different herbs, but daily Ginkgo is in a brain formulation I take. I find Ginger helps pain and to thin blood too. But that will burn my stomach, so has to be with food or put into tea or coffee. (Powder version) Enzymes, I rotate with Serrapeptase and Vascuzyme by Empircal Labs. The enzymes help dissolve fibrogen and break down biofilm in the blood vessels. It has been found to help get rid of pathogens that reside in the biofilms and blood. It also helps pain, if taken away from food.
Cort, Might you add a poll question? It would be nice to know from those who had covid, how many were hospitalized, and how many recovered at home needing extra assistance, or no extra assistance, or were asymptomatic.
Also, there;s only about 10 less voters for the 3 month question, yet the percentages are staying about the same, so not sure how to interpret that.
Does anybody here on healthrising.org wants to turn into a Hemp and CBD reviewer with JustCBD and review CBD infused products like CBD Protein Bars Drop me a line if you would like to get involved
Cort,
Hi…Any idea when the experts will update their opinions on whether and which vaccine(s) are better bets for ME patients?
Although I have friends with ME/CFS that got along fine with the Pfizer and Moderna vaccines, I did not, and won’t be getting the second one (my MD concurred). I had the usual tiredness/headache/achiness for two days after I got dose 1 of Pfizer and thought I was going to be fine by day 3. The days after that my body descended into a very disabling relapse. I’m two weeks out and am doing some better, able to do basic ADLS between couch sittings, without worsening symptoms. However, I don’t want to discourage anyone from getting vaccinated. I’ve had a severe relapse once after the flu once–it seems that body doesn’t do well with major immune system assaults. If yours doesn’t either, that might be something to consider, although I imagine catching COVID-19 could be much harder and even more disabling.
Sounds like the right choice Kay! Stay safe…
Can you update this article with a comparison and advice on J and J vs MRNA vaccines
I’d be really interested in finding out what the advice is for vaccines that are still upcoming (such as possibly Novovax). If I’m not comfortable with an ethical issue in one of the current vaccines and am nervous about the side effects of the others, is waiting for one of the upcoming vaccines likely to be any better? I think getting vaccinated is a great idea if I can find one that works for my situation! Thanks!
Proven that even contracting a mild case of Covid 19 can result
in being a long hauler or suffering some unnoticed dysfunction/damage ( eg cardiac) in ALL ages. Fully vaccinated people with both mRNA vaccines only” prevents “ mod/severe cases. So u can be vaccinated fully and STILL become longhauler! Both
companies did no studies on people with autoimmune illnesses.
This gives me pause to take vaccine immediately despite my 60 age, severity of my me/CFS being a PWCs with up regulated system, moderate/severe Environmental illness and sensitivities living alone.
I am not an anti Vaxer but someone who lost my amazing career
In Nursing,Research 12 plus yrs ago due to me/CFS, and knows
genetic component to my reaction( my teen had POTS/MeCFS). The
DNA vaccines shud be for those over 45 for now. All of these vaccines
normally wud still be in clinical trials. I never get flu shots nor flu. Believe me living isolated , with masking ( USA n95 Indianafacemask or ALG-health) is $$ and tiring so open minded about getting mRNA.
I think those who can wait another few months shud. If u HAD Covid19
One vaccine maybe enough according to NewEnglandJournal. Currently, it’s possible the vaccines don’t protect u from the deadlier variant B 1.1.7 ): I commented earlier ( hoping this time my iPad keyboard Doesn’t space improperly again) and still recommend per guidance MD, Vitamin D3, Quercetin,Vitamin C spaced, coenzyme q with E, Zinc Picolinate, Elderberry( Sambuca has time released cap). Vitaminb12 with folate from reputable Companies as GMP is easily attained Vs USP. I am trying pure encapsulation SunButryate for my gut since that’s where our immunity is but for me nothin noticeable.
Besides USA made N95 info wud like to share unlike billion $ business of supplements tea is a food and fda involved?
Attn BrainFoggers…Multitasker Green Tea impt. Rishi Organic Matcha
Super Green been a game changer. Was using Republic organic and never had this noticeable difference. Republic does have chamomile with lemon balm that helps with sleep( use 2 bags) and both companies have immunity teas with elderflower. Rishi has a turmeric blend that is very tasty but doesn’t work for me. Thorne Research has Curcumin with Meriva that Mayo Clinic and USA Soccer Olympic team used to decrease inflammation. There is never one size fits all solutions to many things in life, but hope this info helps. Thorne makes NAC( used to combat Covid in hospitals and at home for those starting
to combat Covid). Melatonin also used. But check with ur Dr.
Hope some of my brain fog mess helps others with decisions. So far even talking to Stanford me/CFS P.A. ended up wasted time as I knew more..which is not a lot
Hi Cort, now that two months and lots of vaccinations have passed since your January article, is there any update from the experts you asked re their recommendations for people with ME/CFS to take or not to take the COVID-19 vaccination? And which one(s)? And any recommendations for people with POTS? Thanks
Yes please whoever Cort is!
Also I can’t find where the poll results are – (this is a very long site)
It’s hidden I know. I tried to move it up but as it’s part of the program I can’t do anything with it. The Results are at a link at the bottom of the poll questions. I am going to do a summary blog.
Really helpful thanks for posting & all your other brilliant articles on this site. Truly Appreciated
Cort, thank you so much for posting a variety of brilliant articles on this site. I was diagnosed with Fibromyalgia in 2009 and was terribly scared of getting the vaccine. I felt trapped between a fire coming in my direction and a cliff for which in order to survive I had to jump. I was scared because of the side effects that I might encounter with my Fibromyalgia. Well today I got vaccinated with the Pfizer vaccine (1st dose”) and I feel good I got a little headache and took Tylenol and one tablet of 1000ui vitamins C and rest. But keep in mind that I prepared myself with antioxidants weeks before (now part of my daily routine) and 3 days before the vaccination I increased the Vitamins C ( w tablets) and drank a lot of water. I did some meditation too because my level of stress and anxiety was extremely high. And to make it more stressful I woke up with a runny nose and was congested, but no fever (seasonal allergies) I was hesitant, but I did it and feel so relieved. I am not a doctor, or a nurse or a scientist I am a patient with fibromyalgia and I believe that if you can exercise gently, drink a lot of water and increase your antioxidants (making sure to take vitamins C and D) it can definitely play an important part to help minimize the side effects.
Thanks Marlene – good luck!
It is not an easy decision for sure.
For me I did fine with the first Pfizer dose, was achy and tired with the second dose for a couple of days and am back to normal. I hope you have as good an experience as mine.
Hi…I’m 42 and have been dealing with chronic migraines/fibromyalgia/chronic fatigue and Multiple Chemical Sensitivity for 20 years now (pretty sure was all started when I was 22 and lived in an apartment above a restaurant that sprayed for cockroaches…you had to move your dishes and everything once a month and my bed was just a mattress on the floor…ugh thinking of it now I would NEVER live somewhere like that but I didn’t know…no wonder I lasted only 3 months there and got so sick to where I had a migraine every day for 5 years straight)…anyways long story short smells/chemicals are still a huge trigger and just curious how anyone else w/ MCS (Multiple Chemical Sensitivity) has fared taking the vaccine? My doctor suggested kind of ‘wait and see’ due to the issues I deal with. I don’t care for being so isolated yet the last 20 years of my life kind of feel like that anyways with having to social distance and isolate to stay away from smells/chemicals etc….just have concerns about reacting to something in vaccine possibly and wondered if anyone else w/ MCS got the vacc? For reference I never get the flu shot either for those reasons (and haven’t gotten the flu in 20 years lol). Just thought I’d ask on here. Thank you!
Hi Carmen,
I also have MCS (multiple chemical sensitivity) and have been worried about the effects of the COVID vaccine. I have not to date gotten the vaccine for fear of it worsening my condition, I feel my condition has improved a lot recently and I don’t want to experience a setback. I, too, have been searching for comments and results from MCS people who have gotten the vaccine. I am terrified to get it, quite frankly. I also do not get flu shots or even take so much as an advil. I’m exhausted with being in limbo about the vaccine, I want to travel again, but I just have intense fear around the vaccine. Like many others on this board have stated, death from COVID (a gamble) might be preferable to a debilitating setback or further injury. Those of us who experience these chronic health issues, know so well how there are days you feel you don’t belong in the world. So, yes, if there are any MCS folks out there, tell us your thoughts and experiences regarding the vaccine.
Hi Lisa,
I’m just an N=1 but had no issues with the my MCS after getting the vaccine. I just had some flu-like symptoms for a day or two and that was it.
Good luck with your choice!
Cort
Thanks for your reply, Cort. I appreciate it. I’m really struggling with my decision on this and realize I’m probably just going to have to do it. Everyone talks about how getting the virus would be worse (with potential long-term effects), so I guess it’s still a gamble. As an MCS person, I am always in self-protection mode, don’t trust anything, and know that I can’t “take” what most normals can.
Hi Lisa, did you end up getting the vaccine? I also have severe MCS but not CFS/ME. Mine started a few days after receiving a vaccine about 20 years ago. My kids have also had severe reactions to vaccines in the past. I react to almost all medication and have had permanent side effects (hearing and vision loss included) from anesthesia. This is my worst nightmare and I have been frozen in fear about having the vaccine, so haven’t had it. A good friend of mine who is very healthy is currently extremely ill with COVID (he has had two doses of vaccine) and I’m veering towards having it. I figure MCS probably won’t kill me, but COVID might. My big fear is my MCS developing into full blown ME. Does anyone have any personal experience that can help me in my decision-making?