+100%-

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

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).

 

 

THE ME/CFS and FM CORONAVIRUS VACCINATION SIDE EFFECTS POLL

Coronavirus vaccines

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.

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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.

The Coronavirus Vaccine Side Effects Poll for ME/CFS and Fibromyalgia

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 Lucinda Bateman

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

Dr. Nancy Klimas

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.”

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!

Natelson Ben

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) 

Theresa Dowell DPN chronic fatigueThree 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.

The Coronavirus Vaccine Side Effects Poll for ME/CFS and Fibromyalgia

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

Coronavirus vaccines

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.

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