The vaccines are coming…Will they be able to snuff out the more contagious viruses before they spread? Image by torstensimon from Pixabay
The vaccine rollout has been slower than expected. Thus far, 6 1/2% of the people in the U.S. have received their first shot of the vaccine and 1.3% have received two shots. That may not seem like a lot, but in a country of the U.S.’s size, that’s still 26 million doses.
In the U.K. (7.6 million) and Canada (887,000), almost 11% and about 1.4% of the population has received at least one shot. Ten million people (1.7%) in the E.U. have as well. Isreal is going gang-busters. At this rate it will have a majority of its population vaccinated in just 4 weeks. (Compare that to six months for the U.S.)
With over a dozen vaccines in phase III trials ,expect more vaccines to show up. (The Johnson & Johnson vaccine results were just released: it is effective (72%) against the common form of the variant but not against the South African B.1.351 variant.
Infection rates have slowed recently in the U.S., but deaths are still high, and the virus, unfortunately, is turning out to be more genetically nimble genetically that we’d hoped. New, more contagious forms of the virus that have popped up in the U.K., California, South Africa and Brazil have sparked concern.
Given the remarkably poor state of virus sequencing outside of the U.K. it’s not clear where the new forms of the virus are, but it is clear that when they show they up often rapidly come to be the most common form of the virus. The UK variant may be up to 70% more contagious. A South African variant that appears to be 50% more contagious has already been found in 32 countries. A genetic researcher said:
It’s amazing and terrifying how quickly it came to dominate (in South Africa), and it does feel like we’re in the beginning stages of watching this variant and other new ones, come to dominate around the world.
Coronavirus vaccinations per country over time
One model suggests that a combination of the slow vaccine rollout, the decrease in social distancing seen, and the spread of much more contagious forms of the virus could result in 300,000 more deaths in the U.S. over the next three months.
We should not make the mistake we have before and become complacent because the the more contagious forms of the virus haven’t hit us (yet). The U.K.’s experience has been illuminating. Death rates shot up threefold in the U.K. when the new form of the virus hit there. Despite a national lockdown in early January the number of coronavirus patients in hospitals is slmost double it’s prior peak.
Time to double-mask? Staying safe is more important than ever and experts are recommending better and more effective mask protocols be used. Check out three articles on the best masks to wear.
The First Health Rising Coronavirus Vaccine Poll
The @1,700 participants in the first Health Rising coronavirus vaccine poll reported that most people (69%) are at least leaning towards taking the vaccine (29% say they will definitely take the vaccine, 19% probably will, and 21% are leaning towards taking it.)
On the other side of the coin thirty-one percent of respondents are at least leaning towards not taking it. (Definitely not – 9%; Probably not – 7%; leaning towards not – 15%).
The results suggest that the ME/CFS/FM community has taken this virus seriously. Seventy-one percent said they were either very concerned (48%) or concerned (23%) about getting infected with the virus, and a whopping 82% said they were being “very careful” regarding social distancing and mask wearing.
Still, about 150 people believed they’d already been infected with the virus. At least a month after coming down with the infection, many (59%) said they still had symptoms of the virus (23% – much worse off, 15% – moderately worse off, 21% – somewhat worse off.) Only forty-one percent said they’d returned to baseline.
The reports from people three months after coming down with a suspected coronavirus infection (n=131) were not encouraging. The fact that the stats were almost identical to the one-month reports suggested that time was not being the healer one might have hoped for. Most people had still failed to fully recover from the initial infection (25% – much worse off, 16% – moderately worse off, 19% – somewhat worse off.) with just 40% back to baseline.
- Check out a recent analysis of the Coronavirus Vaccine Side-Effects Poll here.
Update! The Coronavirus Vaccine Side Effects Poll for the Severely Ill
In an attempt to find out how more severely ill ME/CFS/FM patients are doing Health Rising now has a side effects poll just for them. If you score 30 or below on the functional capacity scale shown below feel free to take both polls but if you take just one poll – please take the poll for the severely ill.
30: Moderate to severe symptoms at rest. Severe symptoms with any exercise. Overall activity level reduced to 50% of expected. Usually confined to house. Unable to perform any strenuous tasks. Able to perform deskwork 2-3 hours a day, but requires rest periods.
Coronavirus Vaccine Side Effects Poll
Please do not take this poll if you don’t have ME/CFS or fibromyalgia.
To view the results scroll down to the bottom of the poll and click “view results”.
Last Chance to Participate in the High Dose Thiamine Survey!
The high-dose (200/mg or more of oral thiamine daily) survey is closing soon – and will be open until Friday, May 7. If you are currently taking high-dose thiamine or have done so in the past, and feel comfortable sharing your experience, please complete the survey here. (Please do not start high-dose thiamine just to participate in the survey.) Find out more about high-dose thiamine in ME/CFS/FM here.
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.
Brilliant, Cort. Thanks so much for initiating this survey. It will be so useful to so many of us. It’s just what I’ve been looking for.
🙂 Crossing my fingers people are doing well with the vaccine. I’m always a little worried that people who do worse are more inclined to take polls like these but we’ll see how it goes.
The fact that only 40% of people getting the infection reported they were back to baseline after three months in the last poll has made the decision to get the vaccine easier for me.
I forgot to put Covid Arm in the survey– an angry rash that covered about half of my upper arm and itched. It popped up on the 8th day.
Yes, indeed. That – a rash which showed up a week or so later – was mentioned in the studies. If they were correct it should disappear.
The immmune system is weird isn’t it? So much we don’t know.
OpenVaers.org
https://www.openvaers.com/covid-data
Here is a great link to quickly view the report AE of the COVID19 vaccines with reports. Much easier than trying to navigate VAERS especially since VAERS has been down for a few days. Just a remember, only 1% of AE are reported to VAERS according to the 2010 Harvard study
https://digital.ahrq.gov/sites/default/files/docs/publication/r18hs017045-lazarus-final-report-2011.pdf so these numbers as very low.
Thank you so much for this poll! My answers were spot on with those with highest percentages. I hope this poll will make others feel more at ease getting the vaccine. I had Covid in March, I was incredibly sick for 45 days and I now have Raynauds which is likely permanent . I’ve had to cut back work from 40 hours to 24. It was absolutely a set back.
Some vaccines with hard adjuvents in it, such as aluminum, take as much as two years before prejudicial manifestations and consequences. See for instance on this subject the following: Gherardi RK, Coquet M, Chérin P, Authier FJ, Laforêt P, Belec L, et al. Macrophagic myofasciitis: an emerging entity. Lancet
1998, 347-352 as well as, R. K. Gherardi, M. Coquet, P. Cherin, L. Belec, P. Moretto, P. A. Dreyfus, J.-F. Pellissier, P. Chariot, F.-J. Authier, Macrophagic myofasciitis lesions assess long-term persistence of vaccine-derived aluminium hydroxide in muscle, Brain, Volume 124, Issue 9, September 2001, Pages 1821–1831
It would be great if you could add the question to separate reactions with those who’ve previously had covid (suspected vs confirmed cases) from those who haven’t and to see if it is hitting people harder or easier who have already had covid. Really useful survey though, I will be tracking results.
I caught the virus from my health care taker.
I had diarrhea for a week and very nauseous, I was sitting in bathroom holding bowl on lap..
Aches and pains, headache but otherwise not to bad. Except I realized drinking my soda it had no taste? Nothing did, how strange it was as if food and drinks were now tasting like water?
It did curb my appetite. Lol
I had severe fatigue for 2 months, weird chest pains and loss of breath doing even light housework.
But after 4 days my taste buds returned along with diarrhea..
Which seemed to be strongest symptom for long time wise.
I have chronic Ebv
And repeated MRSA infections, I’m prone to infections viral or bacterial always was.
But this wasn’t half as bad as I thought it would be. It was no picnic.. I was scared! Especially when I couldn’t taste. But I didn’t end up on life support so who am I to complain.
I was waiting in anticipation for the vaccine. The astra zenetec knocked me for 6. If this is the vaccine, covid may have killed me.
No discernable side effects from Moderna #1 & #2. As a retired nurse, from reading articles and hearing media reports, I did expect some level of side effects. I was so grateful to experience none. I routinely take many supplements, particularly in the Winter months, so would be curious as to if they helped in the prevention of side effects.
I’m a retired nurse who had Moderna I &II also. I was really afraid of getting this shot, anticipating issues. I felt sick for about a day and a half from the first shot. It felt like a flare from CFS/ME. It scared me, so much I thought about not getting the second dose. But my fears were overblown. It subsided fairly quickly. I got the second shot April 27th. Again, I was anticipating feeling sick. I had been reading and hearing that the second shot was worse for most people. I briefly got sick. It was shorter than the first time and without as many symptoms. I did ROM after the second shot that I didn’t do with the first shot. I don’t really think that’s important, I’m just noting it. And I, too, take supplements. I had been building up to a healthier “preface” shall we say, before taking this – making sure I was eating really healthy food and getting enough rest too. I don’t always get to do those things. Corners get cut due to expediency and my own symptoms at any given time. I am so thankful/grateful/overjoyed that this did not trigger any long term or severe short term complications in me. Whew! 😊
Congrats Ki- glad you got through it OK. I had a similar experience (thankfully)
I have had CFS/ME for 30+ years. I’m trying to find data as to the percentage of people with my condition who have taken the Covid vaccine and what type of side effects, if any, they had. Is that data available anywhere? Also, whether the CDC recommends people with CFS/ME should or shouldn’t take the vaccine. Thank you
That’s what the poll is about. Click on the blue results link at the bottom of the poll to see how people with ME/CFS/FM fared. The CDC has not recommended whether people with these conditions take the poll. Read the blog, though, to learn what ME/CFS experts think. They are probably better suited to address that.
Have had CFS/ME for 32 years. Also FM diagnosis. Also ,likely Lyme (didn’t know I had these until about 8 years ago when I was tested for Lyme with the Western Blot test.)
First Pfizer dose just a little weaker for a day.
After the second dose, bad muscle and joint pain in the mornings for
at least 4 days (am on 4th day today. Moderate to severe. Don;t know how long this will last. Appears after laying down to sleep at night, upon awakening. Gets a little better after walking around for a while, but still lasts until afternoon.
Also weaker than usual until the late afternoon.
Good luck Beth. Most people report being over the side effects within a week.
Like very much your question. Would certainly myself too like to get an answer to it. Still on stand-by about what to do in regard to covid vaccine. Right now I’m staying home 100% of the time… and also questioning people from my bubble everyday about where they have been hanging around …
Hi Sheldon,
I have had the first Pfizer vaccine, the symptoms I marked were:
Fatigue, Headache, Difficulty standing without symptoms, Problems Sleeping.
I also have: weakness, poor balance, low temperature mainly around 95.5 F.
My symptoms have so far lasted more than six weeks.
I have not had the second Pfizer vaccine. I might not take it.
I am 81 years old and have had chronic fatigue syndrome since I was 45 years old.
I hope that helps, but it doesn’t sound too encouraging.
Not very encouraging results. A lot of moderate and severe reactions.
Depends on how you interpet “moderate”. I interpret that as a good response.
Really useful survey. I received my second Astra jab unfortunately The side effects seems to be lasting for longer. My temp has been running quite low and today I felt really dizzy and then fainted. I also noted that I have developed a rash on my arm. Generally feeling unwell with increased Fibro symptoms
Make sure that you’re well hydrated! An saline IV might help if you can get one.
Hi Cort – Thanks for running these pieces on Covid. 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.// I had planned to follow the advice one of the experts on your last blog mentioned: taking nutritional anti-inflammatories beginning three days before the second shot. Now I won’t do that, and want to pass the word on — at least for discussion. Thanks
Great advice Cameron. I will add it to the last blog.
I was hoping you would say if getting the vaccine would cause a spike in my Fibromyalgia and CFS.
I second Kat, I came her looking for info on the side effects, benefits/negatives specifically for those suffering with ME/CFS and FM.
I do have to say I agree that hearing symptoms last 3+mnths is definitely something to consider.
I am awaiting Antibody results but they seem to be taking quit some time :(, I will do further research once these results are obtained.
Most people are reporting no or mild side effects – isn’t that info on side effects? The fact that most people are reporting mild side effects fits with the time span most reporting they have side effects as well – a short time span. If most people are reporting mild side effects why would you expect the stats showing that most people get over them quickly to be wrong?
Please note that a much larger percentage of people who actually got an infection report they still had symptoms three months than people getting the vaccine.
Hi Cort , I had the Astra Zeneca jab 18 days ago and at first was tired and feverish like a bad flu but now weirdly feel loads better especially energy and mental alertness. A few others have said the same thing . Fingers crossed this will last .
The first shot has caused a significant spike in my fibromyalgia. I’m scheduled to take second in two weeks. I’m not sure I’m going back! I’ve felt awful all week.
Like JSandra, I’ve had a pretty significant flare after my first Pfizer. Going to talk to doctor as I suspect a mild allergic reaction as well. I’m also hesitant to go back for the second, at least until I know more.
Good luck Carly!
Hi Cort
This was an amazing questionnaire
Would’ve like more re localised reactions
I had the odd reaction of feeling no pain at all locally initially, but 3 days later having very strong muscle type pain in the area. Then disappeared two days later!
That advice probably doesn’t give consideration to those of us with ME/CFS who have issues with mast cell activation, allergies or sensitivities to lots of things including medications, supplements, foods, and especially those who have had severe adverse reactions to previous vaccinations. I wouldn’t be able to take the vaccine without following the protocol our experts have given including, in my own situation, a course of Prednisone. Will have my second dose of Pfizer next week and be tested four weeks later for antibodies to see if the vaccine was effective or if we tamped down the immune system too much.
https://www.webmd.com/vaccines/covid-19-vaccine/news/20210127/covid-19-vaccine-how-best-to-prepare
This article speaks to issues raised by Cameron and Pat S.
JSandra
I’m also having similar issues. It’s been 24 hours and the wide spread pain has my inside squirming. I woke up nauseous. The warm shower helped for a bit.
Wishing you all good health
Dr Klimas’s most recent post addresses allergic reactions to the vaccine. Worth a read
Great advice
Thanks Lisa
I have Fibromyalgia (diagnosed in 2005 I’m 46) I was fearful of the vaccine because of this. I myself just like so many haven’t done well like others have. Anyways I had the Pfizer my 86 year old Grandmother (she has 0 ailments)did as well. She got a sore arm and was fine. I however felt it within 4-6 and was in bed LITERALLY it knocked me down. I couldn’t lift my to brush my teeth! I was so tired and the headache was horrible non-stop nothing took it away and it was not a migraine. I started feeling better 1week exactly before my second shot. We went again I was scared to death. Sure enough it happened all again. 14 days later I’m back on my feet for 3 days now. My little Grama didn’t miss a step. Those of us who are challenged daily with such terrible chronic illnesses. We are so strong! Fall down get up fall down get up! It’s not so bad, once it’s over… It’s worth it that’s for sure.
Grama! I vividly remember being a young man with ME/CFS and watching seniors blow past me on a walking track – chatting away…..
I, too, think it’s probably safest for many* of us to avoid OTC NSAIDS (Ibuprofen, Tylenol, etc.) 6 hours before vaccination, but it is most accurate to say only that there is “some” research supporting this advice. Much more research needs to be done. I’m pointing this out not to be picky, but because so many people dismiss science today, in part because research results are sometimes described as being more robust than they are and then those conclusions must be withdrawn upon further research. We can all support science best by being meticulous with our language.
*It is strongly recommended that we each ask our own health care providers for advice on this topic.
I had to take a tiny amount of aspirin and paracetamol 4 hours before my Pfizer vaccine because I had bad headman but still got an aching arm and body 4 hours after the jab. Felt quite crap so took another paracetamol and it really did help.
The next day I wouldn’t have know I had had a vaccine and I am someone with very high levels of histamine in my blood and a history of allergies. Though I had worried about having the vaccine it turned out to be absolutely nothing to worry about and won’t worry when I have to have another one in 12 weeks time.
I think this is good advice. I didn’t take any thing before
First Pfizer inj. Monday, this is Thursday night, not even regular meds for fear of interference, although I had not read to do or not to do .
I did take my meds, vitamins, supplements, afterward during the day.
Everyone is different though and will have to go with
Their knowledge of themselves.
Will share more later as I have tried to share 3 times before and got kicked out. Probably because I go on so long lol.
Agreed!!
My reply was to Cameron but it showed up way down the list. I think your take is good Cameron, see rest below. 🙂
I am foggy now but came here to add a link
https://www.frontiersin.org/articles/10.3389/fnins.2018.00988/full
as it seemed important at the time.
I too have had issues with the flu vac and am not interested in getting a like vac… thinking the two that are different may be useful. It will take some convincing… however flawed this can’t think of the word for this … but you know … however flawed it is … we will learn something specific that is not out there for us. To help us navigate covid and vacs…
I wonder if it would be possible to make a timeline how do answer the questions at a wk after a month after ect… or just jot in when things go off the rail should that happen and log the date .
May be much more work than you want that I get from one who has limits. Thanks for doing this anyway I think it is a great idea
Getting mine tomorrow morning – just heard from a friend what Cameron mentioned, and this friend was astounded that the public hasn’t gotten this info. Even what he sent me, they give no instruction as to how long before or after you should wait. If you take a Tylenol a few seconds after the vaccine how would that be different than not taking it “right before.”
Hi Betsy – what I heard on NPR this morning was that you should only take the anti inflammatory after the onset of symptoms. This isn’t talked about much, but there we are, those of us with ME/CFS and all that comes with it! Good luck with your second shot! Fauci said he had symptoms for 36 hours after getting the second shot (he got Moderna). So, hopefully you have some one who can baby you or you can baby yourself for a couple of days just in case.
Thank you for this.
Do you plan to run the survey for three months and then post the results?
If you go to the bottom of the poll and click on view you can see the results. (I’ll add this to the blog).
Which vaccine is best for those who have not had Covid19 and have FM CFS?
Do the two vaccines Mederna and Pfizer’s mechanisms of delivery increase the FM CFS already depleted mitochondrial production of ATP?
Thanks for doing this! It’s always nice to see how I fit in with what others are experiencing.
Cort, Just wanted to say thanks for even tackling the vaccine topic, and providing practical info from Dr’s with advice on supplements when vaccinating. This latest poll will be helpful too.
🙂 Thanks!
Cort. Thanks for your courage to keep on going for all of us.. i’ve written before.. I used to get really angry because the medical field wouldn’t listen.. I’ve been saying for years I have post viral syndrome..just makes sense that they haven’t figured that out.. My belief is based on alot of tests and listening to my body.. Auto immunity plays a huge roll in all these snydromes.. Let us be thankful that we are alive and do have times that are better than the long haul.. Thanks and love to all..Keep thinking positive.. I know depression has done a trick on most of us as well as anxiety.. I just answer back to my thoughts and tell them I am a child of God and I will get through this.. We all are..I am greatful for all my brothers and sisters out there that we are all one…I wish you well moments…love to all..
Had reaction to first Pfizer vaccine. Blood pressure climbed to 202/96. I usually have normal to low BP. Spent 4.5 hours in ER.
Also had headache, tight chest, sweaty palms and tingly fingers.
Had reaction within first 10 minutes of shot. No heart attack.
ER Dr said she had never seen a reaction like this. ( welcome to ME/CFS)
Anyone heard of such reaction?
Sounds like an awful experience. How are you feeling now?
My husband had a flu shot over 6 years ago. By the following day he was in the ER with severe pain and BP of 226/104. He’s experienced chronic pain and fatigue ever since. After 5 years of seeing all kinds of doctors he was given the diagnosis of fibromyalgia and CFS. Still needs 3 medications to control his blood pressure. Many doctors don’t want to consider that the flu vaccine could have been a cause or trigger. Interesting thing is he also never gets sick, not even a mild cold. It’s stressful to consider the risks of COVID against the risk of a vaccine reaction. Sorry to hear of someone else experiencing something similar but also helpful to know it’s not a unique experience.
Wow! The fact that you had that reaction to the vaccine concerns me because I have CFS with multiple chemical sensitivities and hyper immune reactions to other meds. Do you have these issues as well? How are you doing now? Are you going to get the second vaccine?
Pat, how are you doing? do you still have the tingly fingers? i had my AstraZeneca 3 days ago, and my arms/hands are all tingly, hope it settles down
Thanks so much. This will be valuable info.
i am leaning towards not getting it as scary as that is. i also have mcs.
I have to agree. I have so many current problems I just don’t want to make them worse.
I have MCS too Donna. Like you I am thinking of not getting it. I had a flue shot just before a major crash tho I have had cf fibro for many years by then. I have progressed to MCS and a movement disorder.
There is one small bit of hope in the back of my mind that if all this cf ect all of it is caused by a virus … could it be killed by this vaccine… could it push my mostly no operative immune system into wake up and fight mode and win the game. I know unlikely but the idea remains. I have always leaned a bit towards the Disney outcomes… but after 30 plus years of declining health and many attempts and drugs to turn it around… I am wore out. Wait and see is where I sit.
Funny you should mention that. Suzanne just posted:
I sort of was thinking the same thing Sandy was, what if… The development of the Moderna and Pfizer vaccines was based on RNA, not DNA, if memory serves me. It was new stuff. As someone else stated earlier, she had more energy after it. I’ve been feeling pretty ok myself. Of course, the flip side of this could be like the movie “Awakenings” – works well for a while but then a return to not-so-good. Knock on wood for me though. I feel a bit like a great weight has been lifted from my shoulders not having to stress over this decision any longer. Getting rid of any stress is definitely a plus.
It’s amazing how making a decision, sometimes any decision, can really knock the stress.
Those vaccines are mRNA vaccines – no need to get into the DNA – which makes it easier actually. They trigger mRNA to build an immune response to the virus.
Hi Cort,
Has there been any correlation with MECFS severity and return to previous health after the vaccines at 30 days and/or 3 months? Ie. Are people with more severe MECFS more likely to still be suffering at 30 days / 3 months than those with higher functionality and less severe symptoms to begin with?
A great question and I don’t know. That’s the reason I asked about functional status. After the polls gets more answers we can look at it and see if the percentage of people with more severe ME/CFS aligns with the percentage of people who are having more trouble with the vaccine.
Thus far it doesn’t; i.e. indirectly at least severity does not seem to be associated with a more severe vaccine response. About 25% of people have very low functional status but around 5% or less say they had severe side effects from the vaccine.
There’s this alarming 2012 study on the flu shot for ME/CFS sufferers . (Although there were two others that didn’t show this problem)
I remember reading somewhere that one person in that study was still worsening at 28 days after the flu shot. They never followed up on him thu.
I also severely worsened 5 years ago. And have remained worsened with only a slight improvement . So I’m worried.
I want to take the Covid vaccine though. But am worried it will worsen me further. I know that these vaccines are different platforms to the flu shot. I know most ME/CFS sufferers are fine with the flu shot.
I’m actually thinking of taking a strong course of steroids 7 or 10 days after each Covid shot if I start worsening again.
I’d like to see a poll on ME/CFS people who’ve had a past vaccine worsen their disease permanently, but since took the Covid vaccine to see how they fair! Now that would be an interesting poll
————————
‘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
“I remember reading somewhere that one person in that study was still worsening at 28 days after the flu shot. They never followed up on him thu.”
My last flu shot took me over 2 months to recover from. I was in less shape then than now. Still, I’m not entirely keen to what might happen. But at the same time I believe that getting the actual infection might be a lot worse for me then the vaccination… :-(.
That’s being between hammer and anvil. That’s why I consider waiting and seeing how ME patients with the Johnson and Johnson vaccine do. That is a single shot vaccine. With Pfizer, the second shot at three weeks could overlap with a decline of the first shot… :-(.
Cort… The doctors are still out of touch with the reality that CFS/ME is a real illness.. That’s so sad.. We have caused some of it, just because we named it such a stupid name.. Anyway, I didn’t want to bitch about that.. Trying hard to get over 60 years of The medical/emotional side of the disease..
What I know is that three times in my life I had very long reactions to vaccinations.. Not the flu vaccines.. pneumonia, ( which is a dead virus vaccine}diphtheria had a week of severe aching and etc. My college vaccination 1961..I think polio was one of those, it actually bubbled up with toxins and put me down for a week.. What I learned myself was to take baby steps toward any vaccine.. All the Articles I’ve read by CFIDS Pro’s and my doctor said to wait until the results are out there, maybe a few months. That’s what I’m doing.. That’s a sad thing to face but it’s better than dying trying not to die! Thanks for your ever wonderful interest and support you give us Cort.
Nila Shea Williams, in 1988 – The U.S. Centers for Disease Control and Prevention (CDC) chose to name the illness ‘Chronic Fatigue Syndrome’ and published a case definition (the “Holmes criteria”) to be used for research. Several other more medical-sounding names were considered but dismissed because they lacked definitive proof of a causal agent. As Dorothy Wall observed in her book, Encounters with the Invisible, “It was one of those seemingly innocuous bureaucratic acts with untold consequences.”
That in turn had the media 2 years later calling it Yuppie Flu
So the CDC named it, not the patients.
32 years ago I got sick and I only knew of it as ME or Myalgic Encephalomyelitis. That name lost a little credibility when some useless researchers said there was no brain inflammation.
Recently I even had a specialist in ME/CFS say to me ME was incorrect for having no myelitis, however. I sent her information showing spinal cord and brain inflammation (low level but constant) has been found.
5 brain studies alone all validated that there is indeed brain inflammation.
So Myalgic Encephalomyelitis is still a fitting name, except no one can pronounce it.
I don’t let people say CFS, because they soon abbreviate it to ‘‘Chronic Fatigue’ which is only part of my illness. Myalgic Encephalomyelitis still is credible so tell people not to say ‘Chronic Fatigue Syndrome’
Even ME/CFS is an insult But I understand we need the overlap to link studies and knowledge done under both names separately. That’s the only reason.
Meanwhile Long Haulers aren’t getting the help they need because ignorant doctors and researchers don’t relate with what they are seeing patients presenting to ‘Chronic Fatigue Syndrome’ So because of the name, they don’t bother looking at the symptoms of CFS to see the same pattern
They think there’s no way all these symptoms of Long Covid are CFS. When the reality is a large proportion are having the exact same symptoms, and are looking like they are headed for developing Myalgic Encephalomyelitis
Ki I was advised by my family doctor not to take the DNA vaccine but she said I was high risk and could get either of mRNA vaccines. Being me with my previous reactions to different drugs a couple different forms of antibiotics cause anaphylactic reactions one immediately one the day after I stopped oddly I had previously taken both these drugs without reaction so did not expect either of them to be a problem. Birth control pills and an injection of lidocain at the dentist both presented with TIA BC was within a month lidocaine I had many times before then bam both instances left neurological issues for months and perhaps ever given my state of decline is is hard to judge since there are many things I have not attempted since.
So I took a look at the mRNA vaccines both have glycol PEG … I avoid glycol on taking a quick inventory of things I can tolerate no glycol. I have formed this small array of essentials unscented soap mostly. No mouth wash tooth paste hair conditioner fabric softener ect… I use a lot of baking soda vinegar and very few products of any sort.
So I made another appointment and mentioned to my doctor who is a gp I do not have a specialist to advise on MCS or M.E. …ect she said she could not recommend any vaccine if I am allergic to a preservative given my history it could be very bad for me. I asked her if it could kill me she said yes it could. So I went away and thought about it some more wondering if there is any place I could get a PEG allergy test? I have not talked to her about that yet but it is all a mute point as I have been ill and on antibiotics … which at this point don’t seem to have worked so I can’t be vaccinated when ill….
Yes Cort any decision often seems better than none. I have only to think of the time waiting alone for a paramedic to get here not able to breath to go right back to the line of questioning.
So here I sit still stuck on making a choice… I don’t want to get worse. I don’t want anaphylaxis I don’t want a TIA.
As I say this I know I am an odd duck and that I want the unreasonable guarantee that nobody can give me.
History is a good teacher I will wait and see a bit longer maybe new research or a PEG allergic test first. Could be I am just chicken and nothing will ease me into a vaccine. Time will tell not ready yet that is all I know.
This is brilliant! If you could add quick links to the top for Take Survey, and View Results it would really help those who get info overload or nausea from scrolling.
If you could have added to reactions a tick box for needing hospital admission, needed EPIpen after, or needing new medical treatment for side effects (not just extra pain killers that you already have) that would be great – these are classed as the severe adverse reactions in trials (worse ME would not be).
I’m not sure if you are able to add some logic to prevent people responding to all types of vaccines rather than just the one they had or if it already does this.
I think this will be very useful.
Thanks Anon
I tried to do a quick link to the results but the results link is generated by the program and for some reason duplicating it didn’t work. I did remind everyone to scroll down the page to get the link.
Nice ideas. I’m afraid it’s too late to change the poll – too many people have taken it now – but i will keep those ideas in mind.
Had my first vaccine yesterday (Pfizer)
Had reaction headache, slight nausea. EMT took my
BP 180/80, EKG normal. I usually have low to normal BP. She suggested going to ER or going home (20 minute ride)
But to call 911 , pull over and wait if symptoms got worse.
While driving home headache got worse, sweaty palms, fingers tingly with tight chest.
We pulled over called 911.
When they arrived my BP was 202/96 !
Spent 4.5 hours in ER.
No heart attack and BP came
Down to 140/67.
Dr in ER said it was definitely reaction to vaccine but she hadn’t seen one like this.
( welcome to ME/CFS)
Still have headache.
Will get in touch with my ME
Dr to see if she suggests getting second shot!!
Anyone hear of such a reaction?
This is great to see. Thank you for this.
I am wondering if a person who is already taking an antiflamatory med for arthritis should not take it before the vaccine?
I decided on my own not to take my anti inflammatory meds for 3 days before my vaccine. I had two conflicting answers from doctors ….
I’m reading this from Australia, where there’s been very little COVID and vaccinations won’t start for another month. It’s very useful to know how PWME overseas have reacted to the virus and the vaccines. Thank you Cort 🙂
No vaccine for me, am following Ph.D. virologist and M.D.’s who developed a treatment protocol for Covid with Ivermectin and other cheap stuff that cures people and costs a only a few bucks. Do I believe a virologist I’ve known for ten years or the duplicitous government talking heads Big Pharma shills on CNN? Guess which.
Ivermectin cured my adult son, immune compromised even, with five day treatment. I may start taking it prophylactically.
https://www.peakprosperity.com/top-conclusions-after-8-months-of-reporting-on-covid-19/
journal article
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7709596/
Think for yourselves and follow the data, folks, we have enough problems with our FM and ME. All these vaccines are just being “authorized” not found safe and effective by significant peer review and long term following.
Ivermectin is intriguing but right now it falls into the hydroxychlorquine status of something that might help but is unproven. That study you pointed to is very small and had no symptom data. Despite some doctors stating that hydroxy… helped hundreds of their patients helped them beat off the virus studies – and there a lot of them – showed it doesn’t help. Those patients would have gotten better on their own.
There’s no data on helping people with ME/CFS with this virus or the vaccines for that matter. There is lots of data – tens of thousands of people – suggesting that they safe. This is not to say that some will not have a negative response. I do wonder, though, if some people will catch COVID while in the process of getting the vaccination or around the time they get the vaccination.
Both Ivermectin and Hydroxy have lots of evidence… how much evidence is needed. If used properly is super safe…navigate this meta data site. Each trial is listed and you can get to the source data small box index. https://c19study.com/ and https://c19ivermectin.com/. This is much safer then these experimental vaccines. Too scary for me. This group of physicians have been working hard to get the NIH to adopt. These are amazing people you should do an article on them. https://covid19criticalcare.com/
Meta data on Ivermectin and Covid. https://c19ivermectin.com/
Actually, in the face of many controlled studies around the world now this has been approved by NIH/CDC:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7709596/
Great work on data collection. Thankyou.
Now re Ivermectin and HCQ- this article is current and soundly based:
https://quadrant.org.au/opinion/qed/2021/01/covid-19-a-realistic-approach-to-community-management/
Emeritus Professor Robert Clancy AM MB BS PhD DSc FRACP FRCP(A) RS(N) is Foundation Professor Pathology, Medical School University Newcastle, Clinical Immunologist and (Previous) Head of the Newcastle Mucosal Immunology Group, with special interest in airways infection and vaccine development. He is a member of the Australian Academy of Science’s COVID-19 Expert Database
However Im pleased with the statistics he presents for both HCQ and IVM.
He states that the total data so far is a little less than he would like to see, but he then presents this:
# All 27 trials of HCQ showed protection (OR 0.37 (0.29-0.47)). 10 of these were RCT (OR 0.71 (0.54-0.95)) (the Odds Ratio , or OR of , say, 0.37, means “63% protection”, and 0.71 would be “29% protection”). The figures in ( ) are the 95% confidence levels: if <1.0, this is equivalent to {at least } a P value <0.05) (P value refers to probability of result being by chance. A value of 0.05 means a 1 in 20 chance that it is “by chance”, with that level taken as reflecting a significant observation).
# 26 of 32 prophylaxis studies using HCQ showed protection (OR for 5 post exposure studies: 0.61 (0.4-0.74))
# IVM in 8 studies, half of which were RCT, showed protection in early treatment studies (OR 0.28(0.13-0.59) P=0.004)
The article explains the role of the medications in terminating the infections (very similar to using Zinc tablets to stop a cold). IVM may have a role in other viruses too like ebola, dengue and zika- but the is as yet unproven.(as per NIH).
Regardless the role of prophylaxis and early treatment is looking very promising and it may well be far more effective than vaccines.
Im simply watching the space and giving it 18 months before I submit to the risk of an untried vaccine.
All this vaccine stuff is so frightening. I’ve been ill for 30 years and I am frozen in fear to think that the vaccine could make me worse. Feels like a crap shoot for your life. Dr. Klimas’s office said to get the shot and/or weigh out the risks. However, at the time I asked for advice, the J&J vaccine had not yet gotten the green light. Because of its different composition, wondering if the advice will be the same.
Just about the most difficult decision I’ve ever had to make. 🙁🤷♀️ And even more, I hate being frozen in fear and indecision.
The only grace in a decision like this is that you’re kind of screwed either way – you either take your chances with the vaccine or with the virus. There’s no safe decision. We all just have to choose one. I wonder if you have a bad reaction to the vaccine that means you would have done really poorly with the virus? I guess the kicker is that you never know if you’re going to actually catch the virus. Of course you don’t know if you’re going to have a bad reaction to the vaccine either.
On the decision tree – possibility of a bad reaction to the vaccine vs possibility of a really bad time including hospitalization or worse with the virus.
Summary Includes data from ALL ivermectin studies…
https://ivmmeta.com
Even though I had the long covid (got rid of it after 5 months with 4 sessions of the 10 Pass Ozone IV) I don’t want to be a guinea pig. I’ll wait at least one year until there are studies showing that people with CFS are not adversely affected and also if and how effective these vaccines really are.
Outstanding job Cort, thank you,
A
hello A,
do you mind sharing where you had the ozone therapy done? thank you.
I’d like to see a poll on ME/CFS people who’ve had a past vaccine worsen their disease permanently (Like me) but since took the Covid vaccine to see how they fair!? Now that would be an interesting poll.
In 1978 I had five vaccines within one week before a trip to West Africa. Twenty years later is when ME/CFS hit in earnest, which is a pattern with vaccine issues. I decided it was worth taking the covid vaccine though, and got along OK with the first injection of Moderna.
How do you link the vaccines you had to 20 years earlier. Was there some connection?
Hi Helen,
That’s really interesting. I had a very bad reaction to a BCG vaccine in 1976 – weepy sore at injection site for months, acutely tender arm, and enlarged lymph nodes under both arms (mentioned in some articles as an after-effect for some CoVIDs vaccines). I developed ME/CFS & Fibro five years later seemingly out of the blue. I still have the enlarged lymph nodes, episodes of throbbing pain in that arm and the scar is always tender. So I would be very interested to read any articles you have on delayed vaccine issues especially relating to ME/CFS & Fibro please…?
I had 2 re-activations of EBV beginning after a slew of vaccines, including hepatitis vaccines, before a trip to China in 2000. That led to asceptic meningitis/encephalitis in 2003 from which I have had ME/CFS ever since. But the 1st Covid vaccine triggered an immune response that controlled my ME/CFS symptoms for a week. The same after my 2nd Covid vaccine— I even was able to go off my usual anti-virals for that week. Nothing else has been able to do that since my ME/CFS symptoms have become moderately severe.
Thats so interesting maybe this study could explain it ?
https://solvecfs.org/hhv-6-mediated-mitochondrial-modulation-and-its-possible-association-to-mecfs
My ME was triggered by a Hayfever injection and then as I recovered a little I felt well enough to travel needing a course of the Hepatitis . I only took one vaccination as I became so ill with ME and that was thirty years ago . Spent the first ten years more or less bed bound and then the next ten using a wheelchair . The last ten have a been a mixture of remissions and relapses but able to walk again on my good days .
Two years ago I took a flu jab and had relapse for about three months and being positive thought I would be ok this time but the same thing has happened . I am just getting back to some normality after having vaccination in October .
Regarding Covid I decided to leave my options open as starting to get my life back together again .
I am sorry to hear this happened to you. I have already decided not to get the vaccine. I have moderate to at times fairly severe ME/CFS. For me I acquired it at age 39 when i contracted mono. After being very sick for first year (my youngest child was only 3 and I had a 7 and 13 y o at time) I finally leveled off and got back to about 70% pre illness level. But 5 years after I underwent emergency major surgery and my ME/CFS worsened dramatically. It became a more severe and debilitating BEAST than ever before. I now cope with deliberate pacing and diet. Even when not in a relapse I never have good energy and only medium functionality ( before getting sick I was super energetic and active and semi athletic ) I am able to work about 15 hours a week. I am in public and to my knowledge have not caught covid. I wear masks and distance etc. I hope most of the general public does get vaccinated. I do not wish to get covid. My MD told me in her honest opinion if I ever have to undergo surgery again she feels I will not recover. Period. And to avoid at all costs. Anytime I get a cold or sinus infection I am set back again weeks or longer. I feel it is not worth the risk to myself to gamble on the vaccine and possibly worsen the CFS. I hope for your sake you begin to improve. I know that feeling of going back to a poorer ME CFS state and how long it can take for improvement. I feel like I have tried every supplement. Tried less sleep. More sleep. Even seaweed. I have tried everything to get better. I am at a point of acceptance. Enjoying what I can. My long term marriage ultimately did not withstand this as it changed everything. Although my ex husband is still supportive and he did help a lot with our 3 kids during the worst times of my illness. I am actually pretty happy as I now take joy in my family and the things I can accomplish. I know some who have this and other diseases are in even worse shape than myself. I have read many of C o r t s articles but never commented before. Sorry for the book. But I personally do not know anybody else who has this. Only the online community. Having a misunderstood illness is hard. I I am still attractive with a decent figure. I have no idea how as I have to lay down so much. People who think I look good or pretty seem to have a hard time believing I am sick. I have stage 3 kidney disease and early onset arthritis but this is the worst of them and what effects my life the most. I wish I could exercise but regret it terribly every time I do. Through lots of trial and error I can generally gauge how much activity I can handle. But I still get it wrong sometimes. And when i overdo and relapse I have to figure it all out again through more trial and error. As after each set back it seems like I usually lose just a tad more of my previous level of functioning. I want to do so much, but my body won’t let me. Hard when I used to travel and swim and work f t and had a fun and exciting life. I see much older people who can run circles around me with energy. Who have less pain. Although I cannot explain it but my pain has been decreasing a bit. No changes in routine or medicines. So I am grateful for that. Also I have always been less cognitively affected than others. With me it is much more the physical manifestation like PEM. Low energy and muscle and joint pain. Too much intellectual exertion can also drain me. Again sorry for the book. I have just never communicated about my illness and it is just all pouring out. My Sister has read up on this and is in my corner. But I don’t know anybody w this and there are no support groups in my area. Went to a church talk group but didn’t really fit. Maybe the closest I can come would be finding a fibromyalgia group if any. Btw I did not have to go for years and years for a diagnosis either. After the mono I went to a Dr and told her something hit me like a ton of bricks. Told her my symptoms especially at the time feeling like I never slept at all even after a full nights sleep. I told her I was my sickest early April. She ran tests and said i can see you had mono at that time and your Epstein Barr virus levels were astronomical off the charts _ her exact words. She explained some people who get mono go on to develop this CFS. She warned it was a long term illness can last 10 to 15 years. (Now we know can be lifelong) To listen to my body and rest as soon as I felt tired. Not to over do. Take tramadol for pain. Stay hydrated. She figured out immediately and told me what I had. She told me to stay positive and not to go online and read about it because I would read horror stories. I took all her advice. I did not go online and read. I only did that 5 years later after the operation made it so much worse and i wanted to read actual patients and if they knew of Anything. Anything at all that could help. Plus by that time this Dr left practice and moved away. I was lucky enough to get another lady Dr who trained under her who was also very good. I am also grateful I didn’t have to go years before getting a diagnosis. Well thanks for listening. I hope you improve and soon.
Hi. Interesting reading. I have FM which I believe was triggered by a flu vaccine 3 years ago when I was 50. I’d previously had annual flu jabs for years with no side affects. But that one pole-axed me for about 3 weeks and left me with such bad symptoms I was referred to a rheumatologist (not common in the UK). She initially thought I had Lupus then after almost 8 months settled on FM. I now get flare ups about every 3-4weeks but in the scheme of things they’re more highly inconvenient than disabling!
So understandably, I was worried about the COVID vaccine. I had my first dose of the AZ vaccine 14 days ago. I got a dozy of a headache for about 24 hours and it triggered a FM flare up for about 4 days. But on the plus side – the flare up was on the milder end of my normal flare ups. My daughter (in her early 20s and doesn’t have any underlying medical conditions) had her jab at the same time as me had worse side effects than me! So I will have the second does in a few weeks time because I reckon that one more flare up, even if the next time it’s a bad flare up, is a fair price to pay to avoid getting a potentially dangerous nasty virus that I could pass on to someone else and kill them. After all, flare ups are par for the course in my life so, even though my worse flare ups have me in tears and leave me almost unable to recall my own name through the fog, they are never going to kill me but covid could kill me or someone in my family!!
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I had the Pfeizer vaccine first dosage (visit mom nursing home) and thought I got away without side effects other than increased neuropathy, however 2 weeks later I’m back in bed for hours. Now I’m afraid to get the second shot. But it took 2 weeks and didn’t seem that gradual. I’m more I’ll than have been 5 years.
I’d be seeing your doctor about getting a strong course of steroids for now, to try settle the immune response.
Possibly Glucocorticoids as they settle cytokine activity. I posted above a study on the flu shot and ME/CFS in which cytokines were overreacting weeks after the flu shot. I myself 5 years ago should have taken them after 2 weeks as I seriously worsened. So I image a similar thing is happening to you. Steroids may nip it in the bud early. I’d like to know how you get on if you can get some steroids. Print and take that study to the doctor with you. Say you believe the Covid vaccine has triggered the same reaction.
I put it here to save you looking for it.
https://file.scirp.org/Html/17-2100362_24744.htm
Thank you for posting this. It was very helpful to see the results. I had my first shot of Moderna nine days ago and have not had any side effects. What a relief! I’ve had FS/CFS for the past 50 years and interstitial cystitis/vulvodynia for about 10 years now. I was very concerned about possible side effects. A sore arm for a few hours is nothing compared to the Fibromyalgia/IC pain I am used to experiencing.
Norah, I thought I was a CFS long hauler (1992). 50 years is commendable. Received the first dose of Moderna on 1/26 So far so good. Very nervous about the second shot. The second dose of Shingrix last Feb put me in the hospital twice over a 3 month period and I’m still not back to where I was b4. Hoping for the best.
Good luck John!
To Norah–
Would like to speak privately with you but don’t know best way to do that-
Susan
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I had the AstraZeneca and apart from a sore arm, not due to the vaccine but due to the person administering the injection the only bad thing was one headache the like of which I have never experienced but that was 24 hours then went. Apart from that everything in the garden was rosy.
How are you now? Any more side effects?
@Cort:
Blood groups play a big role for chances of actual Covid severity. A+ has like 100% more chance for a bad case, O+ has like a 50% decreased chance.
Part of the vaccine will be deactivated viral particles (or something like it), part will be “other stuff”. So maybe blood group would also play a role in the possible strength of reaction of ME patients to the vaccine.
=> It may be a good idea to include “blood group” into your poll?
Awaiting advice.
I’ve had CFS for 2 years now. It started at the end of a 15 month Chemo trial for Lymphoma. Good news was Lymphoma is now undetected, bad news is I haven’t recovered from fatigue. I’m 66, and had my first Pfizer shot 10 days ago. Haven’t been back to work since. Fatigue is 50% worse during this process. Under normal conditions, I take Adderall for financial focus at work. Since the shot, Adderall doesn’t seem to work. I’m going to take the 2nd shot, but I’m keeping my fingers crossed.
Hondaboy I hope you feel better soon. Please keep us posted with what happens!
Did your adderall start working again? I had my first Pfizer dose last week and noticed about 5 days later that my adderall seemed to stop working. Been like that for about 6 days now. Thought I was just fatigued from it but then started wondering if maybe I had a bad batch of medication since I’d just gotten a refill. Now I’m wondering if it’s related to vaccine.
I actually had Covid in early April 2020. It was a dramatic but short-lived illness, and my ME/CFS felt slightly better for a few weeks after recovering. My ME/CFS ha been pretty steady and predictable for 2 years before that.
But then in the summer I got worsening symptoms and my baseline was worse. The symptoms hardly ever let up, except for one or two days in months. Through Autumn/winter I also got symptoms I hadn’t had before. I have been struggling with them, and fighting them with many natural treatments and think I might be making some headway now (February 2021) I seriously don’t want to kick all that off again with a vaccination.
Also I have unusual reactions and sometimes paradoxical reactions to substances, certainly drugs (can’t go near them) even vitamins. I can’t imagine what would happen with a vaccine for anything right now.
I would very much like to be left alone to my quiet lifestyle which is like “lockdown” anyway.
As an over-65 I have just been offered the vaccine today. I haven’t made a firm decision yet but am inclining to saying “no”.
My blood group is AB-
Hi Sylvia,
I notice you mentioned your blood type, AB-. I have the same blood type and am also over 65 (slightly). I have seen reference to blood type before, is there a significance to blood type with ME/CFS? Is having AB- good or bad? I have had a moderate case of it for 14 yrs.
I too want to get vaccinated but am very concerned of a long-term worsening of symptoms. I have am appointment to get the 1st shot in two weeks but don’t know what I’m going to do, probably postpone it.
I had the Pfizer shot 17 days ago. Felt fine the first 2 days. Day 3 started having CFS symptoms and they haven’t subsided yet. Headaches, sore throat, brain fog, night sweats, sore neck glands. My husband who is a surgeon and has had to live with me and this illness for the last 30 years says he can see it in my eyes. He thinks I’m having a moderate episode of CFS. I’m very conserned about getting the next shot, next Monday. I don’t want to get any worse than I am now. I’m reading the side effects from the second shot are worse. Has anyone with CFS taken both shots and have they experienced symptoms after the Pfizer shots? My family doctor said I will only have a 53% immunity if I only have one shot. I’m so confused and need help.
I had my second Pfizer shot yesterday. Virtually no side effects, such that I almost wondered if they gave me the real thing! Sore arm, but arm gets sore with everything.
Lois, I hope you will get the second shot. See the very good Atlantic article from first week of February by Katharine Wu. She details, in a very readable way, exactly what is going on with the immune system and the shots. Also, why the second shot usually sparks a stronger reaction, but not always. (Also, why the Pfizer shot seems to have lesser side effects than the Moderna).
Since they say not to take any immuno suppressant before getting the shot, because it can lessen the effect of the shot, I figured I’d just try to give my body the best chance by hydrating as much as possible. I drank about twice as much water as usual for 2 days before and including Saturday, when I got the shot. Maybe that helped, maybe not.
I would attach the Atlantic article here if I knew how. They are making all their covid coverage available to the public without a subscription. Maybe someone else can attach it?
ME/CFS is certainly hard to deal with. But covid could be so much worse. My ME/CFS doctor told me in no uncertain terms to get the shot.
Cameron, you said you had basically no reaction to the second Pfizer shot, but did you have a reaction to the first shot?
I had and am still having a bad reaction to the 1st Moderna shot and I am seriously questioning whether I should get the 2nd one.
Lois
I
Just read your post on this amazing site. I too have ME/CFS/fibro
I think you got your 2nd shot on Monday and am wondering how you are reacting to it.. my dr ( friend of dr Fauci!) told me to wait for the Johnson n Johnson vaccine as side effects much less/
Let me know how you are doing
Hugs
Lynda
Lynda Lenza,
Thank you for your comment. Can you share more about why your Dr said J&J is better? And do you also have chemical sensitivities?
Have you gotten the J&J and, if so, how do you feel?
I got the J&J and have been having a rough time. I’ve had more fatigue and aches and the chills have been terrible. I’m over 2 weeks out and there is some improvement but not much.
LOIS, your reaction sounds almost exactly like mine with the Pfizer shot. I had the normal fatigue and achiness the next 2 days but by day 3 I was starting to feel better. I thought, “This isn’t too bad!” But starting day 4 I started going down. Severe exhaustion, fatigue and muscle weakness. Poor stamina. I’d be panting when I tried to do anything–I was that tired. Extremely bad rebound fatigue from minor activities. It’s been a nightmare. I’m a month out and am starting to see improvement. My mind is clear and I have a little more stamina. I don’t get out of breath by doing minor things. But the fatigue, rebound fatigue, exhausting and low stamina are still pronounce. I’m nowhere near my baseline of 15 years. My doc recommended that I don’t get the 2nd shot, since I could barely take care of my ADLs the month after my first. He is sending me to an immunologist for evaluations, since the same thing happened after a bought with the flu in 2005.
I had my 2nd Pfizer shot on Friday, March 12. Today’s Monday, March 15, and I’ve had absolutely no side effects, not even a red spot on the injection site. I didn’t have any side effects at all from the first shot, either. I have fibromyalgia, Hashimoto’s and CRPS (Chronic Regional Pain Syndrome) and I was fully prepared to have side effects but nothing, zilch, nada. Totally unexpected.
Yah!
Mår du fortfarande bättre av vaccinet?
wanted to weigh in since this page and the comments helped me to make a decision about the vaccine. i received the first Moderna dose some days ago and haven’t noticed any changes at all (except for sore arm). this is extremely surprising to me, because all other vaccinations i’ve had like flu shots cause flare ups for a week or so, which sets me back. i’m on Ketotifen (mast cell stabilizer), and i do wonder if that helps a bit to alleviate where the symptoms come from. but altogether, the fact that this vaccine didn’t cause symptoms for me whereas others do – is a good sign. i have to say that i did not take the decision to get the vaccine lightly at all, so i am very relieved
some things informing my decision to get the vaccine (that i learned largely from this site):
– people with prior auto-immune or post-viral syndrome issues appear statistically more likely to be affected by Long COVID (from this guy’s analysis: https://www.youtube.com/c/RUNDMC1)
– i couldn’t know exactly what COVID or the vaccine would do to me, but whereas the uncertainty from the vaccine comes from how it reacts with my immune system, the uncertainty from COVID comes from how it embeds itself in vital organs, possibly persists for a long time, AND how it reacts with my immune system
– more highly transmissible and intense COVID strains are emerging
– if mRNA vaccines continue to be developed and used, i figure i may be in a situation where i will need or want to take one in the future, so i might as well see how i react to it now
– i could try the first dose of Moderna and already get the ~80% immunity from that, and evaluate how i feel with that before deciding whether to get the more intense second dose
– based on the poll, nobody that got the second dose of Moderna had symptoms that lasted longer for weeks
all of this is mostly personal information and i’m not a doctor, but i hope this helps somebody figure out what’s right for them. i really appreciated having this resource before i got the shot
Peter, Thanks for sharing your experience. I’m debating as well due to a very bad neurological reaction I had to a flu and pneumonia shot in the past. My doctor wants me to wait to see how others with autoimmune conditions fare, so I’ve been following this poll and discussion closely.
My doc also made the point you did that since this vaccine is mRNA I may respond differently to it.
Given that COVID can be deadly for people my age (69) and with my various additional conditions, I’m leaning strongly leaning on getting it as soon as it’s available here.
Thanks for helping me to decide. I’m happy you’re doing well so far.
(I’ve had ME/CFS for 35 years and score 30 score on Dr. Bell’s Functionality scale.)
As always, appreciate you Cort.
I have my appt in 2 weeks for my first vaccine, at Stanford. Not sure which vaccine I will get, but, from the information so far, Moderna seems most compatible for me. Problem is I won’t know until arriving. Has that been experience of others?
As reported on Good Morning America, advising not to get Mammograms after receiving vaccine, due to lymph nodes becoming enlarged, following vaccine. Not sure what the time frame would be???
My lymph nodes are painful quite often, and does appear enlarged on my mammograms.
No easy answers, when you suffers from this illness.
My dr said wait 6 weeks after vaccine before mammogram due to possible lymph node involvement
I was pt of Dr Montoya 2015-2019 at Stanford. I am was a RN in SF hospitals East Bay ,devoted athlete for yrs until ME/CFS hit me and my then young daughter 2009( POTS moderate/severe dx Dr.Jaradeh,then
Mild/Mod ME/CFS by Montoya).Montoya told me my case was Severe,
and later denied my attempt to see Dr Davies despite I had ppo. I also refused Valycyte ( study was so small) and flu shots, Saw Dr Kaufman
prior2 last visit with Montoya 5/19 . I believe me/CFS is partially due to genetic makeup, viral responses.
I had no other underlying disease but sudden severe allergies at age
19. My daughter had mild excema until age 3. Despite exposed to many viruses and diseases working with Immunosuppressed pts decades rarely get the flu. Both my daughter and I rarely needed antibiotics. I have nonstop hyper inflammatory responses to environment, chemicals, and my joints attacked ( prob psoriasis arthritis)
Never get flu shot, last time 2001 and got sick immediately next day
with moderate case. Although I don’t have MAST I have hyper immune
system. I am homebound 70-80% pre Covid so vaccine bit scary as on my own. j&j uses DNA so knowing I have haywire system that will be a no. I plan on getting mRNA but plan on getting my AB titer after first dose. I believe all pts with autoimmune illnesses shud. Finally, public
can purchase real NIOSH N95 masks. 95% are scam,counterfeit, Purchase DIRECT Indianafacemask.com ( I is not cap) soft fold.
Always check measurements prior to purchase. If ur glasses fog , it’s a no. On Feb 15 agl_health.com ( OH) will also be avail. The Patriot
Mask comes in soft, or cup. The cup comes in a small , which fits my
petite face perfect. Don’t get a valve for indoors as droplets occur, and cup can be covered with a cheap loose surgical style mask so u can use again. Keep it in paper bag. Once u start sweating in a mask bacteria etc may render it useless. Taking usp supplements ( gmp is not good enough) Vit D3, zinc, vitamin c, and under guidance of ur dr ,baby
aspirin, quercetin, coenzymeQ, E, use olive oil to cook ( Nordic has double strength Omega 3) can make difference. Look up at Oregon
Health which vitamins need another to potentiate potency. Whether needs to be taken with food ,spaced apart.
If indoors wud wear goggles, or glasses and ensure u are in and out
of store under 45min. Always be careful handling mask as u take it off.
Kathryn, I’m interested to know what it was like to see Dr Kaufman. I hope you would be willing to answer a few questions. Did you learn anything new/did he actually recommend specific supplements/treatments and were any of them effective for you? Also. was paying out of pocket worth it??
I have been weighting the pro’s and con’s of getting vaccinated for a while. I finally realized that the choice was either to get vaccinated or continue to live as a shut in for a long time to come. If you think forward to this summer when a lot of people are vaccinated, governments will relax restrictions, people will become less likely to social distance, wear mask, etc. So if I am not vaccinated how will I feel about going out? Will I want to gather with people in doors? Will I want to have visitors to my home? Those that are vaccinated will most likely still be able to become infected and would be asymptomatic. With more contagious variants of the virus to become dominate in a few months, there would be a greater risk of getting the virus. My wife was vaccinated last week and she will want to go out, visit people etc. Even if I stayed at home she could become infected asymptomatically and bring it home to me.
Covid is going to be with us for a long time…years. I just don’t see any other option than to get vaccinated
Gary, Exactly! I’m in the same situation. My husband is vaccinated and quarantines with me except for going to the store. But this will change by summer. Plus, being totally isolated from family and friends for an indefinite period will become and of itself a mental health hazard. Sooner or later COVID is bound to find its way to me if I don’t vaccinate so I might as well jump in and get it over with.
I had my Pfizer vaccination 6 weeks ago, I was fine for a few weeks then all of a sudden I’m finding my fatigue is worse, I’m breathless and dizzy. I have been more bedridden recently and even had to work just two days last week. I am hoping things will improve!
I had the same problem of breathlessness, as well as fatigue and very exhausted. Started a few days after the Pfizer vaccine and has persisted for a month. I think it’s starting to get better, but I’m not taking the second shot. I think that one would put me in bed indefinitely. My doc is sending me to an immunologist for evaluation.
If you’ve already had COVID, are you pointlessly putting yourself at risk getting the vaccine (even though there are various virus strains out there)? Surely it’s more of a jab in the dark (sorry!) than contracting COVID once again?
I’m someone who’s reacted badly to vaccines in the past (most recent jab in 2019 led to a seizure and stay in hospital).
I’m in the UK and have just been offered the COVID vaccine through the NHS.
Myself and my husband had COVID in March 2020. He’s healthy and brushed it off within a week. Almost a year later and I still have various symptoms and haven’t recovered to my previous baseline. I’ve been diagnosed with Long COVID.
I’ve had ME and Fibromyalgia since a bad episode of the flu in 1996. Two flu jabs in the very early 2000s only compounded the issue. I’ve had proper, true flu itself four times since then (including Swine Flu in 2006/7) – the most recent flu being a few months ago at Christmas 2020 (didn’t feel like COVID again, plus I had negative COVID test). Unlike the 1996 flu, none of the proceeding bouts of flu have left me more ill than I was before.
That said, I’m in two minds as to whether I should get the vaccine. On the one hand I feel like I’ve survived one bout of COVID and must retain some tiny kind of residual immunity – even if they say this only lasts a few months – on the other hand I don’t want to get sick with COVID again…and not be so lucky next time.
Essentially, should an ME/ Fibro patient who’s already had COVID, subject themselves to the risk of succumbing to COVID once again; or would it be wiser to take a chance with the side effects from a brand new, unstudied vaccine (in terms of both ME and efficacy)?
I am very curious to hear others opinions on this question! I had Covid 19 in July and I have had RA autoimmune issues for many years. I have Fibromyalgia and CFS. I work in a school and have been presented with the option to have the Pfizer vaccine. I am leaning towards not getting the vaccine. I just do not feel comfortable with it. I have so much pain daily that I just cannot see risking the additional pain or other issues, possibly longterm, the vaccine may cause!
Tricky one. I’f be looking at those with ME who have Covid twice to see how they faired.
What you are saying about having partial immunity though seems to be what I would have thought about a variation of a past infection. However I’ve read some healthy people have had a worse bout of Covid the second time round. Although that’s probably a rarity.
But I also read that some newer strains of covid are evolving techniques around the human immune system, if so then a vaccine for that (yet to be developed) would be important.
I’m wondering if us vaccine reaction prone ME people should instead take a quarter dose, 4 tiny shots over a longer period, i.e. a quarter once every three weeks.
Half dose will probably be too strong as 5 years ago I took the baby dose (half the adult dose 4 weeks apart) of the flu shot and permanently severely worsened my ME, bedridden a year, couch bound 2 more years, and only now can I go out a little more, however still severely worsened.
I’m also thinking we should maybe take glucocorticoid steroids minimum of 10 days after each Covid shot (if we start worsening) to tame the cytokine activity that becomes a lot more active in ME patients (Proven to happen after the flu shot and the Hep B shot).
I think there’s too much adjuvant in standard vaccines for us ME vaccine prone ones to aggravate an already wired and miscommunicating immune system. Adjuvant is like pouring gasoline on a fire.
I think we need a poll for ‘vaccine prone ME patients’ too. I know some have already had the Covid shot. Some are ok some are worsening.
Steroids or immune suppressants maybe the only safety pad for us though. But we can’t take them too soon after being vaccinated as the body needs time to build immunity after each shot.
It’s a Catch 22 situation in every direction we look, as so many unknowns!
My dear friend who is in her 80’s and has fibromyalgia (not CFS) and AFIB, got severe COVID in March and was in ICU for 3 weeks. She developed long covid after that. She took the vaccine and the first dose made her so sick she said it felt like Covid again, only without the respiratory problems. But she recovered within a couple weeks. Her doctor said that people who’ve had COVID usually feel awful with the first shot but for some odd reason don’t with the second. And that’s exactly what happened with her. She breezed through the second dose and even moved into a new apartment the next day .
She’s doing very well now.
Thanks for posting that! It is very interesting. Especially the part about her long Covid symptoms going away after the vaccine. I’m glad she’s feeling better!
I had 2 flu zone vaccines in past 2 yrs. I had severe pain and was unable to walk a week after 2020 flu vaccine. I have had ME/fibro for 40 yrs. I regained the ability to walk after a week but the severe muscle pain continued. I have been in a pain clinic for most of past 2 yrs and just starting to feel better. I am an RN and MPH with a strong background in public health and vaccines. I don’t think I will ever be able to take any more vaccines. Read Plague book by Judy Mikovits. Gives info about ME that is pretty much unknown. I worked in infectious disease in a major university. I am still reading and watching for any new research on people withME and vaccines. The most serious side effect is Gillian-Barre. That seems to be my next possible or probable reaction to another vaccine.
I followed Mikovits extensively during the XMRV saga in ME/CFS. I saw when she told reporters XMRV was in the mother’s milk, when it was going to be worse than HIV/AIDS in Africa, when she made promise after promise that failed, when she failed to successfully carry out a standard test for the virus when her reputation was at stake. Now’s she’s an anti-vaxxer.
She can be very convincing but I concluded that she was the last person I would trust on anything.
I am a patient of Dr. Eric Gordon, an eminent M.E. M.D. (specializes in hard to treat chronic illness, but has a huge M.E. patient caseload) and I trust him implicitly.
I have not spoken to him personally yet (I plan to have a “telemedicine” appointment w/ Dr. Gordon in the next 6 weeks), but his office (Gordon Medical Associates or GMA) sent out an email saying that, even for their patients, on balance they recommend getting vaccinated.
This is significant as this office takes possible harm from vaccinations quite seriously.
I was just talking with my husband and what someone suggests above (getting the Johnson and Johnson vaccine) and, I would add, depending to a degree on the advent of herd immunity, seems like a possibly sound course.
I have not had a vaccine since getting ME (30 years ago), but I have immune responses to what would be considered the most innocuous substances.
Also, I have interstitial cystitis or IC, which Dr. Gordon has greatly improved by having me take Cromolyn Sodium, which is a mast cell stabilizer (a popular IC supplement, Cystoprotek, is essentially a mast cell stabilizer and that’s partly what gave him the idea). IC involves mast cell degranulation (the mast cells release histamine and other inflammatory substances with the slightest provocation).
And, I have common allergies (especially to mold), and those also involve mast cell disorder (and that’s why antihistamines work for allergies).
For now, I am not even eligible for a vaccination (too young, none of the recognized pre-existing conditions), but when I am I am very strongly leaning towards getting vaccinated.
Still having symptoms of bowel irritation, headache & joint pain after over 2 weeks from having AZ vaccine
Thank you for this. I have been so worried about the side effects. It has never been a questionof IF I take it, but when and what vaccine I should ask for.
My home town only offers Moderna and from what I’ve been seeing Pfizer would be a better bet, howerever this shows the difference isn’t that big.
It also helps me prepare for the shot as I now have a view of what can happen. So thank you!
Wow! Looks like Astra Zeneca is causing moderate and severe side effects in vast majority on just the first dose!
Sorry, but these numbers just aren’t adding up!
I’ve been trying to put your numbers into a spreadsheet so I can do a graph (easier for my brain to make sense of).
I’ve figured out that in some places there are digits missing (eg Pfizer first dose Trouble Sleeping of 3 people = 5% of survey size, which puts survey size at 60! It’s obviously 30-something.) Going by the ‘No discernible symptoms the survey size is approx. 690). This has happened a LOT.
Under the heading “Symptoms from the first Pfizer vaccine shot lasted for:”
The percentages add up to 100%, but the sample size only adds up to 213.
Similarly, “Overall, I would describe my symptoms from the first Pfizer vaccination shot as being:” the 100% gives a sample size of 256.
There are a couple of obvious reasons for this: people missing bits of the survey either through brain fog, or they were filling it in early and since symptoms were ongoing then they didn’t fill in, for example, the duration. You can’t fight brain fog, but maybe have a ‘I don’t know yet’ check box to enable people to say they have filled the survey in early, before they know the answer to that question.
As someone with both severe ME and MCAS, I initially let out a cheer when I saw this survey was being conducted and the results published.
I’m now probably as confused as I was before reading it.
So on the Pfizer,
“The first Pfizer coronavirus vaccine shot resulted in [symptoms] (check all that apply):” = approx 650 people answered.
“Symptoms from the first Pfizer vaccine shot lasted for:” approx 213 people answered, so 437 of the people who had the Pfizer didn’t answer this.
“Overall, I would describe my symptoms from the first Pfizer vaccination shot as being:” 256 people answered this.
I really, really, want to love these survey results, but honestly believe that when you don’t point out that almost 2/3 of the people who answered Pfizer Q1 didn’t answer Pfizer Q2 or Pfizer Q3 then you are seriously skewing the results. Was it because they had the jab an hour ago and couldn’t answer Q2 and Q3 (in which case the answer to Q1 is useless anyway, as they haven’t had time to react) or is it that their reactions are ongoing? Or is there actually only 50-odd ”actual’ people have filled it in, but filled it in several times? So filled it in saying they had had the jab. Then a few days later, saying they had a moderate reaction, then a few days later with enhanced reaction? How many are just eejits trolling the internet and filled in question 1 for a laugh and then couldn’t be bothered with the rest of the questions. My personal suspicion, going by the difference in sample sizes between Q1 and Q2/Q3 is quite a few.
I had certainly started drawing some conclusions until I realised that there are gaping holes in the data, and that in reality any conclusions are to be dealt with with a great deal of scepticism.
I’m going to carry on now with Excel and the rest of the data, except I’ll be plugging my data with “unknown” columns.
Maybe then I’ll be in a better position to make an informed decision on what may well be a life-altering decision for me (as having the flu jab 3 years ago was).
I really, really do appreciate what you’re trying to do. Fixing those missing digits would be a start, and maybe a little more discussion about the results, and telling people to not fill in until either they are side-effect free or 2 weeks have passed. After all, the people filling in are trying to be helpful to the rest of us who haven’t made the jump yet for a variety of reasons: I can’t see a little bit of gentle guidance putting them off.
Hi Niki,
The statistics are done using a polling program developed by a company called Gravity Forms which is well know and used by many companies. One review stated “Used and respected by many of the biggest brands in the industry, Gravity Forms has long been considered the most powerful forms plugin for WordPress.” https://winningwp.com/gravity-forms-review/ I assume the stats are correct.
Whenever the results give a percentage it refers only to how many people answered that specific question
“Symptoms from the first Pfizer vaccine shot lasted for:”
The percentages add up to 100%, but the sample size only adds up to 213. (The 213 should refer to the number of people who answered that question.)
“The first Pfizer coronavirus vaccine shot resulted in [symptoms] (check all that apply):” = approx 650 people answered. – Actually there were 650 answers but 650 people did not answer that question.. Since each person probably said yes to several symptoms it looks like more people are replying than were.
“Overall, I would describe my symptoms from the first Pfizer vaccination shot as being:” 256 people answered this. – In this case 256 is the correct number.
Hi Cort,
Niki is right. The poll results really don’t reveal useful information. It’s too soon for most people to take the poll. I started taking it and realized it was pointless because it’s only been 9 days since my first Moderna shot. I’m still having side effects and I have no idea how long they will last. I simply couldn’t answer the questions yet. There should be instructions for those taking the poll to only take it after they’ve had both shots and have recovered from all the reactions and side effects. It’s the only way the poll will yield accurate and useful data.
That being said, thank you for putting it together and doing the poll. Things like this desperately need to be done.
I understand what you’re saying and I amending the form to ensure that people do not answer it if they are still having symptoms. I am also creating a screenshot of the results which I will use to see if they change over time.
While I agree the poll questions could have been more precise if most people actually answered the question asked- which was how long their symptoms “lasted for” – implying that they were no longer present – the results should be fine. You did the right thing by not answering the poll because your symptoms are still lasting. I’ve made that more explicit now.
If someone hasn’t gotten the second shot I believe they can answer the first question and then come back and answer the second.
Even if the polls are missing some people longer symptom durations (it was always going to take time to catch up to those) – the most important question might be – how severe are the side effects? The fact that 60-65% of people stated the Moderna and Pfizer vaccines produced mild to non-existent side effects was encouraging.
The AstraZeneca vaccine, on the other hand, appears to be producing many more side effects and would appear to be the last choice.
A former poll suggested on the other hand that up to 40% of ME/CFS/FM who got ill during the pandemic were still having trouble recovering some months later. Something to keep in mind when thinking about getting a vaccine.
Hi Cort,
First of all, THANK YOU for doing this! I think we are all so grateful for your site and your efforts!
I read your response to Jennifer and Niki, and I understand where you are coming from. But, I hope you don’t mind me also putting my 2 cents worth in about the poll design.
I do agree with Niki and Jennifer completely. I also think Jennifer is correct in suggesting “There should be instructions for those taking the poll to only take it after they’ve had both shots and have recovered from all the reactions and side effects. It’s the only way the poll will yield accurate and useful data.”
Personally, I am looking to see the yield on both more severe symptoms and longer durations of symptoms related to receiving these vaccines. I do think that participants are answering some of the questions too soon, and some parts not at all, for all the reasons Niki stated that could happen. I’m also not sure everyone who answers the parts about the 1st dose is coming back to answer the parts about the 2nd dose. There could be understandable reasons for that as well.
Another gentle suggestion: it would be wonderful if there was another question that somehow parsed out if more severe reactions and longer durations of reactions were in any way related to a longer diagnosis of ME/CFS/fibro or a higher severity of these illnesses pre-vaccination. Perhaps that is asking too much though… I would be happy enough if the numbers just added up better on the existing questions. I believe they would with Jennifer’s suggestion.
Lastly, I am looking forward to seeing more respondents on the J&J vaccine…
Thank you again, and peace be to you and all of us who are in this particular dilemma together.
Thanks for the suggestions Carole.
We updated the question to ensure that no one answered the symptom question until they either had no symptoms or had symptoms longer than a month. How would you suggest changing that to ensure that no one is answering the question too soon?
I’m sure that some people are answering question 1 and not coming back for question 2. On the other hand if you had to wait until you were symptom free (or a month later) to answer the second vaccination question they might forget what happened with the first shot – or they might forget to answer the poll at all.
Also a lot of people have been getting vaccinated – and we wanted to get data out on how people with ME/CFS were responding to the first shot as quickly as possible. If we had waited for data on both shots we would have had to wait a month or so to get data on how people did with the first shot.
At a time when so many people were finally getting vaccinated – the US was doing a million or more shots a day at that time and is doing many more now – that did not seem like a good option. All in all, we went with having people answering whatever questions they were able to answer when they were reading the blog.
We did start a poll on how the more severely ill were doing about a week ago – you can find it here – https://www.healthrising.org/blog/2021/03/17/coronavirus-vaccine-poll-chronic-fatigue-fibromyalgia-severely-ill/
Where are the actual results? After all, these liquids have no been tested as safe for any of us. Not for allergies, comorbidities, meds, ANYTHING, but we do know they have caused pathogenic priming the only time used, and killed all the candidates when in contact with the coronavirus. Not only that, but why the hell would I risk putting this trash in my body, when it’s vaccine damage that caused my ME in the first place. You’re asking us to put untested liquids, that neither prevent infection/spread into us, from Pharma Corps covered by indemnity…into our already damaged beyond repair bodies, so that you can study us like lab rats. I didn’t get compensated for the firs load of damage caused, and I suffer for that every second of my existence, get tortured for it by the DWP, like it’s my fault. Yet we have Ivermectin, safe, actually is a prophylactic, and treatment. Aside from the fact that the very best thing people can do is take Vit D3 K2 C and Zinc.
I understand your reluctance regarding vaccines given your history but the vaccines have been tested a 1000 or 10,000 times more than Ivermectin which when last I looked had one small trial in COVID. All the studies indicated that the vaccines dramatically reduce the chance of a serious illness.
Thought you might like to see this. https://ivmmeta.com/
I had the Pfizer vaccine last week and since then I have had 7 pain free days from my fibromyalgia . I have never had pain free days in years . Has this vaccine cured my fibro?
Ha… I forgot to put that side effect into the poll 🙂
So far so good. Your response certainly suggests that your FM is immune mediated and that pumping up the immune system in certain ways can help. It’s not such an unusual notion. Gottfries in Scandanavia treated people with ME/CFS for years with a vaccine and the BCG vaccine, I think it is, proponents believe it can do so for FM. FM really needs more immune research.
Continued good luck!
I had the 1st Pfiser shot one week ago and it greatly reduce my ME/CFS fatigue and brain fog. Today I am more fatigued but I did more in the past three days than the past three month. Even hand washed the car, first time in about a year that I have been able to do that. Can’t wait for my 2nd shot in 2 weeks. Do you thing the benefits will last?
Time will tell! Vaccines do cause long term changes in some antibody levels….Maybe those are the antibodies you need???
Hey, how are you feeling now?
Hi Suzanne, just curious if your still pain free? I just got the first Pfizer vaccine yesterday and felt almost immediate relief from the daily pain of fibromyalgia I’ve also had for years. I have no idea if the pain is going to stay away, but I’m sure enjoying this right now. 🙂
Had second Pfizer vaccine on Feb. 16th. Became sick with fever over 101, chills, headache, fatigue, and muscle aches all over. Even now on Feb. 26 am still experiencing aches and fatigue with a low grade fever. Am 65 yo and have had CFIDS for 35 years and FM for 20 years.
Can the vaccine cause a relapse??
Hi Lynn,
Sorry to hear you are still having symptoms. The second vaccine shot is the one more likely to cause problems. Keep hydrated (try oral rehydration solution https://www.healthrising.org/blog/2020/09/15/saline-ors-oral-rehydration-pots-chronic-fatigue-syndrome/, keep rested, try to stay as relaxed as possible. It should just take time to pass. It’s not surprising that it’s taking longer for some people with ME/CFS. Good luck!
Can you advise the number of Bells Palsy cases occurring post vaccination?
This is a question for Cort Johnson. I wish the list of side effects on the survey had included panic attacks post vaccination. I’m scheduled for my first shot on Tuesday and am terrified to the point that I’m considering canceling.
I’m not at all worried about the safety of the vaccine for the general public and as for those of us with ME/CFS this poll has given me the courage move forward. Thank you so much for doing this!! You have provided a real service to our patient community.
I have not taken any vaccines for the past 22 years because I had a flu and pneumonia combo that triggered an immediate series of horrendous panic attacks affecting my autonomic nervous system. 3 trips to the ER and several specialists later yielded no real answers except to say I “probably “ should avoid vaccines. I’ve been on Xanax ever since. At the time I had had ME/CFS for 10 years and suspect my immune response to the vaccine triggered the panic attacks – it was clearly a biological response rather than a psychological one.
Some healthy folks on Reddit have reported similar panic/nervous system responses with the COVID vaccine.
It would really help me to know if severe panic attacks are being experienced by others here and if they have subsided along with the other side effects. Have you had any feedback about this? Thanks again for all your work.
I had a panic attack 2 hours after getting my second dose of the Pfizer vaccination. I’m healthy and have never had a panic attack in my life. I was not nervous about getting the vaccination at all and having never experienced a panic attack and thought it was something else. I honestly felt like the vaccination triggered it because I was completely content and it came out of no where. I did call 911 and my blood pressure and heart rate were elevated and EKG was normal. I did not go to the hospital because I started to feel better but an hour later I had another attack. I didn’t tell anyone because I didn’t want to put people off from getting vaccinated.
Will you be adding the Johnson and Johnson vaccine to the poll? I will be curious to see how ME patients do with it. Thanks.
Absolutely. Thanks for the reminder 🙂
I had my first Moderna shot on Tuesday afternoon. Almost no side effects and by Wednesday morning I felt better than I did before getting the shot. All that anxiety for nothing. Lol.
Thank you for putting this poll together. It has reassured me that I am not alone in still having side effects. I probably won’t be able to answer the questions on the poll for awhile because these side effects don’t show any sign of letting up. I had the first dose of Pfizer five days ago. It’s possible that I will not be able to respond to the poll until one month after my second dose. Because of this, it would be helpful to me, and if people in a similar boat, would continue describing in the comments what their progress is as far as resolving side effects. My main ones are headache, malaise and very bad brain fog. I am taking ES Tylenol once a day. It would be nice to hear what remedies people are finding helpful.
Pfizer 1st V 24 hours ago. I am moderate to severe. No remarkable symptoms. Arm tender. Was instructed to wait 6 hrs after V to take Tylenol which I did at bedtime plus Benadryl & CBD/THC tincture which I use for my constant nausea. Had the best sleep in ages. Woke this morning feeling normal tired, not ME fatigue. I feel like regular person for the first time in 3 years, casually resting; not wiped out. I was prepared for a personal Armageddon. Very thankful it went this way.
Thank the gods. Congratulations. Good luck on the next one.
Hi I’m curious if this has lasted and possibly even improved with the second shot like many long haul covid people are claiming? I have had marked improvement with 1st Pfizer and am hoping to hear positive news because I think my symptoms may be returning after a good first week.
Wondering whether anyone would have links to studies or research that might explain the anecdotal improvements to ME conditions following the mRNA vaccines?
Wouldn’t that be nice if there actually were any studies!
Cort this is brilliant. Thank you so much!
I noticed that the AstraZeneca results are very different to the others – especially severity – but unlike Pfizer and Moderna all permanently housebound people will almost certainly have only the AstraZeneca or J&J jobs (possibly Valneva if that gets approved).
I think it’s massively going to skew the results – much like the CBT and GET trials restricted to only those who were less ill showed radically different results to those for severe ME.
It’s unclear if AZ or J&J results are skewed by the fact all those with severe ME are restricted to them – having a severe crash lasting days or weeks caused by a phone call is the norm for many. But to have a deterioration lasting over 30 days may be a reason to avoid it.
Could you do a separate analysis for only severe ME/CFS – possibly identified from a mix of diagnosis and Bell’s score – severe fibromyalgia doesn’t necessarily restrict vaccine choice since many can leave home on occasion and have a choice of jab. Severe ME is sometimes ticked by people with moderate or moderate / severe ME because they aren’t aware of how severe you need to be for severe.
This will help those less severe see if the AZ or J&J vaccines are disproportionately taken by the most ill too.
I’m one of the 2% at Bells score 10, still waiting for my first jab at home.
I think it would be easier to perhaps add for each jab the percentage and number having severe ME/CFS, and possibly the percentage with MCAS.
If it is possible to add a second jab option of “avoided due to side effects of first jab” without messing up the analysis that would be helpful – second jabs are possibly going to show less side effects if a particular vaccine’s first dose causes many problems because only those with milder illness are likely to have the second.
We also can’t tell who is avoiding certain jabs due to allergies, or has been told that they must not have a second dose of the same jab.
If you consider extending this I’d be interesting in a combined question for the inactive vaccine jabs – Sinopharm and Sinovac I think – they are being extremely widely used in Asia and outside Western Europe and the US.
I know this is a big request and want to thank you for all your work putting into together on HR.
Second ask is for the future – a similar ongoing poll for the flu season – I looked and there appears to be no research anywhere on flu vaccine reactions. All I have found are extremely old vaccine polls on the ME Association website. I can’t understand why there hasn’t been any research on this.
Hi Cort, I was going to make the same type of ask.
Is it possible to parse out the more severe patients and show how they do?
The Astrazeneca vaccine made me so sick. I’ve never gotten sick from a vaccine before and it made my whole body shake uncontrollably while I went from fever to cold sweats. It worries me that this is a novel vaccine that had me feeling such strong side effects. I don’t think covid would have given me a worse illness than the vaccine did but it seems governments are going the way of vaccine passports and restricting people’s freedom unless they get the vaccine. I just hope there is no long term side effects or fertility issues down the line.
Hi iam looking for anyone who can maybe help calm me down. Istook my first moderna shot on march 4, That day within mins my head started to hurt and 20 mins after tightness in chest .The tightness lasted 2 hours then past. but the headache was bad for about a day or so. then about three days later i have been having pressury headaches. its my 10th day after first shot is this normal to still have theses pressure feelings in my head and intermittent headaches. iam scared to death to go to drs offices or hospital for fear of covid itself. All these horror stories on the net as well. Just wanted to know if headaches are normal this far after 10 days or is my brain inflamed or something i have still been doing my waking cardio its nuts 2 days ago i walked for an hour n half not much pain at all. but today it ramped up while i was waiking did an hour and then rested then pain went down a little. geez this really stinks didn’t have these issues before the first shot. any one please let me know if you know if these headaches can linger after first moderna shot many days after. thanks so much for any info
Michael. I had my first Covid shot on March 15th (Moderna). Since then, I have had lightheadedness, bad fibro fog, passed out once, and have pressure headaches with trouble concentrating. So much so that when I get dizzy, I have to close my eyes for hours, because if I move my body at all it feels like I am on a rollercoaster and going to pass out again. Three weeks post-shot, I have started to feel better. I can handle the fibro symptoms of the shot, but this cognitive thing has been scary. My doctor told me if I get migraines, to expect migraines with the vaccines. This is like a migraine mixed with a mini stroke almost. I was taken to the ER/A&E by ambulance the night after my first shot, but all blood work and vitals are okay. However, every few minutes I kept forgetting where I was.
God bless everyone and give us strength to face our jabs and be calm and rest.
Hmm- I can’t seem to find the actual results of this poll- have they been tabulated yet (or partially?) Thanks for any links or guidance 🙂
Ditto, where are the results from the poll? There are no links at the bottom.
Right next to the submit button at the bottom of the poll is the blue Results link
Thank you! I found this poll / comments tremendously helpful. As of right now, I have not yet become eligible to get the vaccine. I anticipate it will happen relatively soon, while I more than qualify from a health standpoint, currently I do not meet the 65 age requirement. I do plan on getting vaccinated when allowed. I am going on 8 years with ME, diagnosed for 5. I will reserve further comment until I have been vaccinated so I can actually contribute to the data.
I did want to mention one thing regarding comparing the Covid Vaccine to the flu and some of the others. Not trying to convince anyone to go one way or the other…The Covid Vaccine is not the same type as Flu, Flu and some others use genetically weakened or altered virus, where the majority of Covid vaccines do not, they use MRNA which for lack of a better term is a sort of coding (not DNA, DNA is not affected) this coding tells our system to manufacture a protein that sticks to all the spikes of the virus, clogging them up. The spikes are what allows Covid to attach itself to and infect cells, replicate, etc. think of it like a Velcro ball, how it would easily stick to a target, the MRNA would equate to wrapping the Velcro ball with a layer of tinfoil…it would just bounce off. Again, the only reason I bring this up is for education, a simple description of what makes it different from other vaccines. As we all well know our bodies don’t exactly play nice, I know for me, since this miserable disease destroyed my life, I have developed hypersensitivity to meds among many other things. This is exactly why I am so thankful for this resource! I was pretty freaked out and back and forth. I am always looking for more info and ways to learn about anything and everything….so take this for what it’s worth, and I’ll shut up now!!
Thank you for the information. I have already determined I will not be taking any vaccine. I feel like I do not need any mo9re “help”. I very seldom leave the house. When I go out for medical appointments I keep the distance and wear my mask. Best wishes to all that do take it.
This is fabulous and the results line up with everything I’ve read about the Moderna/Pfizer vs. Johnson & Johnson shots. My main fear is ending up with worse fatigue or other long-term symptoms from the vaccine, though I know this can happen with the wild virus too (along with other potentially deadly symptoms).
I’m considering getting the J&J one very soon. The only thing holding me back is not knowing if or when I may have been infected with COVID, or whether I may unknowingly be infected now and how that would affect my reaction to the vaccine. They say it should be fine but I know that you’re not supposed to receive shots when you’re sick because doing so can make you VERY sick. Since COVID is so often asymptomatic, getting the shot while unknowingly infected might be enough to push your body into dangerously ill territory. Especially if you already have an autoimmune disease or something like ME/CFS. This isn’t an “anti-vax” position whatsoever, just general concern because everyone is different & this illness (COVID) is so new and enigmatic.
But it’s quite reassuring to see that so many people in a similar boat have fared so well with the shot. Thank you for constructing this well-thought out survey!
We’ve had our second Pfizer vaccine
First Pfizer vaccine was just a dull headache
Felt great
Second Pfizer vaccine given 21 days later
No symptoms for 2 full days
Day 3 after the second Pfizer vaccine
Terrible headache, fatigue and muscle aches
We are now still experiencing fatigue and muscle aches 14 days later
Contacted our primary
Was tested fir Covid test was negative
Our primary said due to having fibromyalgia and my husband has rheumatoid arthritis
We are experiencing side effects of the vaccine doing it’s job and playing havoc on our immune systems
She reassured us that the side effects would diminish in time
I’ll be thrilled when they do
Good luck Maruan!
thanks for all of this helpful Information I was dx with Fibro back in 2006 Ep Barr 1980ś I have had no fibro symptoms in ages ( last few years) I had my first Pfizer inj Sunday afternoon felt a little weird lightheaded when I got home then felt hot ( no temp) aches started in next day ( monday) felt better tuesday morning went biking within two hours headaches nausea fatigue better late afternoon awoke with some symptoms again this morning brain fog headaches and body aches fatigue went for a two mile walk usually can go 4 felt crappy came home I would say it is mild with intermittent moderate symptoms of Fibro Kat I am grateful to receive the vaccine but upset that it brought Fibro symptoms back hoping 2nd dose is not worse and that these symptoms resolve I still feel that I would rather not get Covid and albeit having symptoms think getting covid would be much worse If anyone else has had both injections and can give feedback please do thank to all for this site
I have fibromyalgia and I’m also a cancer patient. Stage 4 that metastasize into the lymph nodes of my stomach. I have the first Pfiser shot last Thursday, I’m on day 6..
My oncologist recommended getting the shot. I started to have a reaction after the second day and it has progressively gotten worse. I received a toradol shot today from my primary care physician. My second
shot will be April 8th.
My side effects include extreme body aches. Weakness and fatigue, arm, leg, hands, feet and shoulder pain. Shortness of breath with any exertion. Overall body pain when resting or moving, and occasional headaches. The morning is the worst, as is my fibromyalgia in general. So for me, all of these side effects are pretty much the same as my normal side effects, times 10.
My immune system is compromised due to 4 rounds of chemo and 6 weeks of radiation. There are no studies really yet on the side effects of cancer and taking the covid shot either. I have an additional four rounds of chemotherapy. That has been postponed until after I take the second shot.
My doctor advised the significance in the risks of not taking it, and the risks in taking it. I chose, as a 57-year-old female, and a former smoker, that I need to take the shot as my doctor advised.
Thank goodness for my support group! The second shot I’m sure will not be easy. But my sister is vowing to stay here with me. She lives 5 hours away. I wish all of you good health! Thank you for this poll. It makes me feel that I’m not alone.
Thanks for sharing Marie. Good luck!
I had my COVID shots six weeks , I’m still having muscle and joint paint , sob,can’t sleep. I wish to talk to someone
Sorry to hear that Roxanne! Have you checked out Dr. Klimas’s suggestions? I wonder if they might help. They are in the blog for the coronavirus side effects poll for the severely ill.
How are you doing Roxanne?
I had my first Astrazeneca 5 weeks ago and am still suffering the effects. I had shortness of breath, chest pain, heart palpitations, and headaches. Now weeks later, it seems to have kicked my Fibromyalgia back in and I still have headaches. Don’t know if I will get the second dose.
Ive had both shots of the Pfizer vaccine and did great! No symptoms or side effects! Ive had CFS/FM/AFS & very sluggish liver so cant tolerate most meds or supplements. My arm wasnt even sore. I was so worried this would make me crash after I seemed to be cured of the CFS, but I didnt. (Btw LENS Low Energy Neurofeedback System has cured all my CFS symptoms, migraines, tinnitus and anxiety for last few years.) Ive been working on healing my liver as I need hip replacement/tx. Im 56.
Congratulations Dana on your recovery. I’m sending you a questionnaire about that and would love to get your story on our recovery stories pages – https://www.healthrising.org/forums/resources/categories/recovery-recovering-stories-click-to-see-categories.123/
I have ME/CFS and fibromyalgia (for 5 years moderate/severe after acute gastro viral onset) and had the AstraZeneca Oxford vaccine on 15th March in the UK. Other than a sore arm for a few days I felt dreadful the next day or so (in bed with headache and all over aches, more flulike than normal and took paracetamol). Then, like a few others in the comments (Naomi, Georgia, Susan, Gary and Suzanne), I started to feel better, better than I had felt for a couple of years. I had a coldsore appear, which I haven’t had for most of my ME years. After a week I have been walking further, sitting, standing, waking, talking and thinking better and although not completely well feel a definite improvement in many symptoms back to the level I was at before I had a deterioration with mumps and menopause onset 2 years ago. Obviously with our community everyone is different and reactions to the vaccines, as with anything we do, will be different for each of us and I am not advocating for the vaccine as I was apprehensive myself but I never expected this reaction and thought I should share it here and it is interesting to see I am not alone.
Interestingly there is also emerging evidence that the covid vaccine improves symptoms in some long-covid patients.
https://elemental.medium.com/how-vaccines-might-improve-long-covid-c1f41c4d7378
https://www.nytimes.com/2021/03/17/health/coronavirus-patients-and-vaccine-effects.html
It would be interesting to hear from any others who have had improvements and whether they are long lasting. Thanks Cort for the information on Dr Gottfries I have never heard of vaccine treatment before, that something that can give 65% improvement in ME/CFS and FM patients isn’t being promoted is truly unbelievable. This is something that definitely needs researching and with interest in long-covid fingers crossed that it may give insights into ME/CFS too.
Thank you Cort for this poll, the website and all you do.
I had my 2nd Pfizer shot 10 days ago. After about 5-6 days of feeling worst, then a few days of back to normal as of yesterday I am feeling better than normal. In fact this morning is the first time in years that I didn’t get my typical morning brain fog and nausea. This usually starts around 9:30 and goes until I eat lunch. I usually go to my bedroom recliner and chill for a couple of hours. Didn’t happen today so I’m hopeful the improvement will stick. After the first shot I felt better as well until I hand washed my car and took a 5 hour drive. That was a mistake. I crashed and was much worst for a week then back to normal ME/CFS symptoms. I am not going to over do it this time.
There has to be some connection to the workings of the vaccine and improvement of symptoms. Can I/should I get another shot once their begging people to get them?
Had similar relief the 1st week after 1st pfizer shot but now am back to normal after pushing myself much more than usual. Wondering if the benefits were the same for your second and if so whether they stuck.
When will you be posting any of the results of the polls? It’s now, March 28th, and polling began in January. I’d like to see, at least, some preliminary results before going for my shot. My community is giving the Moderna Vaccine. I only have anecdotal evidence from CFS/FMS patient’s comments here and on other forums. Comments from the other forums all indicated SEVERE and long term side effects from both the Phizer and the Moderna Vaccines. Comments in this forum are suggesting that some are experiencing improvement to CFS/FMS symptoms after receiving the Astra Zeneca or the Phizer vaccines. I’d like to see your data so I could make an informed decision about which vaccine to receive. My CFS/FMS is fairly severe.
Hi Dara – you find the results by clicking the Blue Results link at the bottom of the poll – sorry that it’s so difficult to find but that’s the way the program works.
I also did a recent update of the results here – https://www.healthrising.org/blog/2021/03/17/coronavirus-vaccine-poll-chronic-fatigue-fibromyalgia-severely-ill/ and have started a new poll for the more severely ill.
Good luck with your decision
I am surprised by Dr Bell’s rating scale. It seems to pay little attention to cognitive disabilities/brain fog. I treat many ME/CFS patients, and the majority find the brain fog the most debilitating symptom. Going shopping for necessities is a challenge for most, and impossible for many, but the inability to make sense of a simple TV program like “The Simpsons” or the inability to read more than 2 paragraphs is more disabling to some than the incapacity to do 10 minutes vacuuming or light sweeping. “Able to work sitting down for 3-4 hours per day with rest periods” is uncommon for people rating 40 in the physical scale.
Thank you, Hugh. I agree!
I agree as well. For me, mental exhaustion is at least as debilitating as the physical. That’s why I rate myself as a 20 instead of a 30.
Moderna: Besides the symptoms listed I also had a sore arm, only slightly worse than a tetanus shot. The sore arm was the longest lasting symptom both times. Felt like it had been hit with a baseball bat, and stabbed with a nail, but it wasn’t that bad comparatively to fibro pain and ME/CFS pain.
I’m a ME/CFS and fibromyalgia long-hauler (last 25 of my 67 yrs); Pfizer vaccine completed 3 weeks ago but immed after 2nd shot, flare-up began; hands continue to swell at night, finger joints tender; osteoarthritis worsened in knees, hands, lower back. Hoping these joint changes temporary.
1st shot minimal side effects, 2nd shot, hit like a Mac truck. Flat out down, it feels like it’s similar to fibromylaga as in it amplifies the pain receptors. I’ve had 2 C-spine surgeries 2 L- surgeries and 2 surgeries to try and fuse my ankle, (2 with in past 4 month) I have fibromylaga and arthritis & nerve pain in my neck, back and foot but still push forward, working as much as I can. After this 2nd shot (only day 2) I am flat down. Severe muscle aches and pains. Trigeminal nerve pain is way up , and really bad eye pressure and pain (I have glacoma)
Just read the moderna injections are 10 times less likely to be effective on newest strains. It’s a bummer, I hope these side effects go away soon.
I looked up the ingredients of these vaccines and I won’t post them here but there is no way I’m going to let pharma ruin my life even more. Besides, there’s a 99% survival rate for #19 and for all the other corona virus variants for me and for many of you.
If you do choose to get the vaccine, please do realize that your body’s initial reaction may not be the end of the story. In ferrets, similar vaccines caused cytokine storms that were so strong when the ferrets were introduced to the wild virus, they all died. There are other long-term issues I’d be concerned about as well all for a virus with a 99% chance of recovery.
The survival rate depends on your age and health. I assure you that the survival rate is not 99% for people my age. Instead the hospitalization rate is pretty darn high. It doesn’t end there – about 40% of people with ME/CFS/FM who took the poll reported they still had not recovered three months later and the after effects of that may be enormous. Contrast that with the fact that most people are handling the vaccines just fine.
Either way there’s some risk. So far so good for me. My first Pfizer vaccination shot went well. Hopefully the next will as well.
Thanks for doing this Cort. I found it quite helpful. I’ve had ME/CFS for about 13 years and went from severe (bed bound) to now being able to go running and biking. I have an appointment for my first shot this weekend. I’d rather take a chance at having side effects from the vaccine rather than risk getting COVID and possibly going back to being severely affected by ME/CFS.
I don’t believe ‘big pharma’ has it out for us or any other conspiracy theories. I believe in science and facts and strongly believe this is the best route. Thanks also for not buying into the conspiracy theories being spouted on this thread. I feel they do everyone a disservice by spreading false information. I continue to appreciate all you have done for this community.
Thanks Zach and good luck! I had my first Pfizer shot and it went fine. Crossing my fingers for the second one 🙂
I had my first Pfizer vaccine a month ago. I immediately developed a migraine, and within a day also became so dizzy & disoriented that I have subsequently fallen down several times, and had to start using a cane. While there has been some improvement, I continue to have severe debilitating attacks even after a month. I’m concerned this maybe permanent, and question whether I should have the 2nd vaccine. This has worsened my quality of life, which wasn’t very good to start with (was at a level 30).
Hi, I’m from Germany and yesterday I’v got the invitation to a Pfizer Vaccine, since I’m in the high priority group (CFS/ME). My GP doesn’t have much concernes about the shot, also the leading specialist on CFS in Germany recommends the vaccine. But they also reccomend the flu vaccine, which worsens the health condition of many patients with CFS/ME. So I’m very anxious to get the vaccine, because I wasn’t vaccinated since my early youth. I always had bad reactions on the shots as a child .
I’m about 60 on the Bell scale, so I’m not really eager to loose some of my abilities and worsenen my CFS-condition. Of course I’m scared of Covid 19, but I’m also scared of the vaccine. I don’t have anyone to talk about it, since everybody thinks that the vaccine is safe and the side effects will last only few days. But what if not?? I’m 49 and having CFS since almost 20 years, but got the diagnosis only few years ago, although I knew that I have it, only the doctors were always blaming my symptoms on stress and so on. I find it’s terrible to choose between two evils- the Vaccine or Covid. Since reading of all comments made me very tired ( my english isn’t quite good), I would like to ask if those of you who have side effects from the vaccine are again feeling okay after weeks or months? I don’t want to loose what I have now, I arranged myself with CFS and started to live somehow normal life after years of suffering, so the risk of a relapse is making me my decision so very difficult..
Thank you!
I have had one shot Moderna. I was way more tired in the evenings for four days, and needed to rest in bed by 4 or 5 pm, but then I was back to normal/baseline.
Before getting the vaccine I followed the protocol recommended by Doctors on this site, and took antihistamine before and after, plus SAM-e, Quercetin, Liposomal C and glutathione, nac, Ubiquinol. I was pleased to have so little side effects.
I felt that obtaining 80% immunity was worth the risk, and I’m glad I did it. Not sure about the second dose, and timing of second dose…
I have fibromyalgia and a nerologity issue with sciatic for four years in my hip and a crooked disc in lower spine and I am also a type 2 2 diabetic.
I had the first Moderna vaccine, the first week was like I was in a fog and I was extremely exhausted, the next 2 weeks I felt ok , but slept 12 hours a day. This my 4th week, I feel like a zombie, I am having trouble breathing, took a walk and felt like I was drunk, could hardly make it home, I am in a fog and sleep 12 hours a day.
Should I still take the second shot of this Moderna vaccine. I am totally 💯 scared too death
I got Moderna in February. I have fibromyalgia. Minor muscle soreness after the first one. Much more immediately after. I have had my fibro pretty much under control the last 10 years. 4 weeks after second shot my flare up was so bad I went to the Dr. and got a steroid shot. That helped for a few days and then it went through the roof. I went on prednisone for a week. Felt great. I am 2 weeks out of that and now an old foot injury has come back. I broke my foot 4 years ago and stretched ligaments. 2 days ago I woke up and couldn’t walk on it and the pain was horrible, just like when I broke it. Went to ER, nothing broken. Went to my Dr. and she was stumped. Going for MRI next week. Just heard from my cousin who has Fibro and got her shots the same day as mine and her Fibro has gone wild AND an old Achilles injury is flaring up for her too! If you have Fibromyalgia or Lupus, don’t get the Moderna vaccine. I would rather take my chances with covid. I am 65 but very active until now. Now I feel 80!
Many have had the worst symptoms from the 2nd jab in comparison to the first, so it’s good that the survey includes that information. However, it has also been reported that people who previously had a covid-19 infection had notable side effects when getting the vaccine. Is there anywhere on the survey that asks first if the individual ever tested positive for covid-19 or tested positive in the last 3 months?
I’ve had both Astra Zeneca vaccines.
After the 2nd vaccine, 10 days ago, the initial 1 or 2 days I were feeling ‘rough’ – as per usual. Then for the last week I’ve noticed much reduced symptoms of me/cfs, pots etc.
For the first time in longer than I can remember I’ve been able to do a bit more physically and didn’t feel ill during or pem after. I still do have symptoms, though they are reduced so it’s a positive improvement.
I’m still being conscious to pace myself
I don’t know if this will last or, if it’s a coincidence or is related to the Astra Zeneca vaccine.
Just thought I’d let you know to see if anyone else were experiencing similar.
I’ve only had my first Astrazeneca but my reaction was severe and it has made my Fibromyalgia worse.
I was able bodied and quite well recovered from ME/CFS before the vaccine and had been for several years. Within days I became severely affected once again, with severe muscle weakness making it difficult to stand or do basic tasks. I now need to be looked after. The muscle weakness is the defining feature of my reaction and I have made only very limited improvements in mobility 4 weeks later. I feel the patient community must be made fully aware of the potential for adverse reactions like this happening.
I have also been severely hampered by the vaccine, even after several weeks.
Two weeks after the second Pfizer vaccine I have suffered a relapse after a three year full remission. So far it is mild PEM without brain fog. It has been one week since my relapse began. The vaccine had me puking my guts out all night, and my original illness was triggered by a doxycycline regime and trigger shot for ivf.
I’m sorry if I missed this but are the any data on side effects from vaccines for “normal” people? I’m wondering how it might stack up against those for people with ME/CFS and FM
I had absolutely no reaction to my first Pfizer injection, not even a sore arm. I received the second injection yesterday no sore arm again, but I woke up today at a 10 on Dr. Bell’s scale, normally I’m around 30. It’s all pure fatigue, my body feels like it’s entirely made of lead. Hoping to feel more normal tomorrow, I have an appointment with a specialist.
Rest, rest, rest and stay hydrated and try ibuprofen.
This is expected…Good luck!
I had an extremely severe reaction feeling like I was beaten with a bag of rocks but it did not last and I am glad to be vaccinated.
Glad it passed Kate!
Before the Pfizer vaccine, I had enjoyed five years of complete remission after a fifteen year bout with the severe muscle weakness associated with fibromyalgia. Over the past five hears I routinely hiked 10 – 12 km/day – much of it uphill. After the first Pfizer shot, I felt generally unwell for two weeks, and then, to my absolute dismay, the pain and weakness in my legs came roaring back. I am utterly depressed and fearful as to what this may mean going forward.
Sorry to hear that Alys. Hang in there. Hopefully it will just take time. Good luck.
I’m looking for the results if numbers of Pfizer shot 1 whose symptoms lasted over 30 days but they didn’t seem to be here. Do you have those numbers? It seems to be the only one configured differently and it would be good to know that stat for comparison with the others.
I don’t know what happened there but I can’t add that question now without skewing the results. It’s probably similar to the Moderna results though as they’re tracking pretty closely with one another.
I scored 30/100. I had the first dose of Pfister and was bed ridden for 3 days. Suffered body pain 10/10 + other symptoms. I am now in week 4 and still having: Mild nausea. Muscle and joint pain. Headaches. Weakness. Extreme Fatigue. Loss of appetite.
I know some of this is my Fibro but it has tripled my usual symptoms…. I know how important it is to get vaccinated, I’m looking for answers as to getting the second dose of Pfister.
It’s interesting that this poll is designed for people that are no longer experiencing symptoms, suggesting that the vaccine is the right choice and eventually everyone will get back to their baseline. Unfortunately there are no studies to support this and it’s still an experimental treatment. Thank you everyone for sharing your responses, these have been most helpful. I will not be taking the vaccine at this time.
That’s right Rae – this is a different kind of poll. Never fear though. That kind of poll is available. Ifyou want to check out TWO polls that ARE assessing the side effects from the vaccines simply click on the links in the blog or check out the results discussed in this blog.
After first shot of AstraZeneca my tinnitus was 100% worse three days after had weird flashing lights in one eye which lasted 1 hour. Two weeks later blurred vision for two weeks. I had psoriasis 6 weeks after Jab and hadn’t suffered that for 50 years. Had weird pins and needles like symptoms in my feet Off and on and bowels loose Had second jab two weeks ago. Dizzy and tired for a week. Felt fine for three days and yesterday woolly headed and tired. Some sensations in feet. Waiting to see how if the other symptoms from first jab take place.
Quite a journey! Good luck Jill!
Forgot to say. Tinnitus still loud
I suffered with Fibromyalgia/CFS for many years but have had it under control for the last 5 years. 5 weeks ago I took my first Astrazeneca vaccine. I was fine until the middle of the night when I woke up with chest pains, shortness of breath, heart palpitations, headache, and burning pains in my legs. This went on for weeks but antihistamine helped the breathing a bit. Now my Fibro/CFS has kicked back in! I went to an allergist today who said NOT to take the second dose of Astrazeneca as I had a severe reaction. He said I should have had an epipen. Also he said originally the first dose was only supposed to be a half dose not all out but they changed their minds. Maybe I would be ok today if they hadn’t bombarded my system. I may be able to take a second vaccine of a different kind but this is so experimental. No one took Fibromyalgia seriously years ago and now it was hard for me to get a doctor to believe me about the vaccine reaction until I went to the allergist. If anyone gets any further info on this I would love to hear about it.
Thirty years ago I was diagnosed with EBV. After 2 years of intensive acupuncture treatments I was able to regain my health. Have had several relapses over the years. However I was in excellent health prior to receiving the 2nd dose of the Pfizer vaccine. Six days after receiving it, I woke up with a tremendous headache and debilitating fatigue, which has persisted for the past 2 months. Have not had any reaction in the past to the flu vaccine so this took me by complete surprise. At this point I am very reluctant to receive any booster.
It’s been a week since my 2nd Pfizer vaccine. I did well with the first one. This time around I really can’t put into words my level of exhaustion. I have fibro. No CFS/ME dx. BUT I have a newly found respect and much empathy for those with CFS/ME. I deal with fatigue all the time, but not this. I’m very hopeful it’s temporary. Does one vaccine seem to trigger less symptoms in ppl like us? Also, after the first vaccine, I read that a person has between 50% to 90% immunity yet no one has mentioned stopping after the first shot. I know it’s not ideal, but neither is chronic illness. Do you know if this is an acceptable alternative? (I have asthma too, so getting the vaccine was the decision I made. I don’t think I would’ve faired well at all with COVID.)
Good luck Teresa! Fatigue is what the body does to make one stay in bed and stop infecting others – so it is an expected and natural reaction. I hope yours clears up soon! Make sure that you are well hydrated. One thing people with ME/CFS in a relapse do is get saline IV’s. In many places you can apparently have them to come to you.
My CFS/ME symptoms had all but disappeared after a long and exhausting battle. I had the first AZ shot and that night my symptoms came roaring back. That was five weeks ago and still not much sign of remission. I definitely will not be having the second shot and bitterly regret taking the first one.
Darn! So sorry to hear that Robert! Good luck…
You will have 80% immunity by day 14 on your first shot. It near 100% protects you from severe illness/hospitalization. What isn’t known, is how long that immunity will last on only one shot.
good luck