Health Rising’s 1st coronavirus was answered by over 7500 people. This one is more comprehensive.
It’s been over ten months since Health Rising published its first coronavirus vaccine side effects poll. At that point only 6 1/2% of the U.S. population had been vaccinated. Since then, vaccines have become readily available and over 189 million people or 59% of people in the U.S. and 72% of the U.K. and 73% of Canadian residents have been fully vaccinated.
Early polling suggested that the ME/CFS/FM community took the 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.
The @1,700 participants in the first Health Rising coronavirus vaccine poll reported that most people (69%) were at least leaning towards taking the vaccine (29% say they would definitely take it, 19% said they probably would and 21% were leaning towards taking it.). On the other side of the coin, thirty-one percent of respondents were at least leaning towards not taking it. (Definitely not – 9%; Probably not – 7%; leaning towards not – 15%).
All the ME/CFS practitioners queried in April of this year recommended taking the vaccine.
Health Rising’s First Coronavirus Vaccine Poll
Over 375,000 people have viewed Health Rising’s first vaccine poll and over 7500 people have taken it. The results have been pretty consistent over. The vast majority of respondents (70-80%) reported they were over the effects of the first Pfizer/Moderna shot within 2 weeks while fewer did 65/66% did for the Johnson & Johnson/AstraZeneca shot. The 2nd shot, as expected, produced more severe symptoms, but 70 and 72% still reported they were over its effects within 2 weeks. Again, AstraZeneca produced more symptoms with only 59% of AstraZeneca recipients reporting they were over the side effects of the second shot within 2 weeks.
While most people did well as a significant subset did not. About 28% & 37% of Pfizer/Moderna recipients stated the side effects from the second shot were severe and 23 & 19% still had symptoms at least a month. More people taking the 2nd AstraZeneca shot took longer to recover from (33% were still recovering after a month) and more (30%) described their symptoms as severe.
Reports of some difficult recoveries resulted in Brandon writing a blog asking if there was a better way.
The Vaccine Improvers
On April 26th after hearing reports of people who had actually improved after taking the vaccine, Health Rising’s “vaccine improvement poll” found that 29% percent of the approximately 1100 people answering the poll reported they’d improved, almost 30% of them “dramatically”. Thirty-three percent reported their improvements lasted at least a month.
Health Rising’s New and Improved Vaccine Poll
With all this data why create another poll? HR has received numerous requests to fill in the holes from the last polls. In order to determine how side effects or improvements from the vaccines lasted the poll extends the time frame out to six months, asks vaccine recipients if they would take the vaccine again, asks about supplement regimens to prevent side effects, and determines how people with ME/CFS/FM who came down with the coronavirus have fared over a longer period of time.
More vaccine news is coming out. Keep an eye out for the Solve ME Initiative’s Vaccine response results which include both long COVID and ME/CFS patients. If my notes are correct Nancy Klimas is also studying the effects – both biological and symptomatic – of the vaccines on people with ME/CFS.
Taking the New Poll
- To complete the new vaccine poll, fill out the questionnaire in this post.
- Clicking the box for the vaccine/vaccines you took will take you to further questions.
- Please complete the new poll even if you completed the older poll, as the new one asks additional questions.
- The hyperlinks in this post will take you to write-ups of the older and superseded version of the vaccine poll.
I had existing nerve pain in my thigh from a previous virus, but it was mild. After the first Pfizer shot within three hours it was excruciating and stayed that way for four months. Better now but still not back to normal. Just wondering if others experienced nerve pain. Not planning on taking a booster if I can avoid it, because of the severity of the pain.
it happen to me too
The response options make sense as is but it feels funny to select “less than 1 week” when my side effects lasted just a few hours. Oh well. Looking forward to the results Cort!
Heya
Do the numbers indicate the number of people who selected that option? And the percentage indicate the percentage of people who chose the corresponding option? A little bit confused because some of the numbers don’t seem to match the percentages? Eg, under the supplements question there’s a number 9 with a 4% and a number 2 with a 9%?
Are you experiencing shingles?????
I am not experiencing shingles but have a rash that appeared a few days after taking the 2nd Moderna shot..and to this day I still have it.It appeared first as bumps then they turned into blister-like and itched and now they are just bumpy pink spots. they are only on out extremities like my hips and thighs, my elbows down to the wrist and my left breast and underarm only outside area not all around. I mention this to my Drs. I Tell them it appeared after my 2 nd moderna and they like close up …they don’t even look at it..It has me very concerned and wonder if anyone else has this symptom and if it is due to the Moderna shot.
I think I had a small shingles outbreak too.
Four and a half months after my J&J one shot vaccination, I had a couple of days where it seemed like my immune system completely dropped out from under me. I had an outbreak of oral herpes, a patch of ringworm, oral thrush, chills/low-grade fever, and blisters on my chest that were very suspicious of shingles (I have had shingles in the past). I took fluconazole for the fungus, and everything resolved over time.
I took lysine hoping to prevent a herpes reoccurrence (and potential first shingles) as I’d heard this could be an issue post vaccination… I’ve long had coldsore type lesions happen *only* whenever I’ve eaten enough cheese or yogurt; two foods that somehow seem to disrupt my immune system enough to allow the innate virus to reactivate. Normally now I don’t suffer any herpes lesions at all, since pretty much giving up dairy altogether about 20 years ago. Before that, I regularly endured coldsores.
I had a mild reactivation ( a sore on my nose) two weeks post Pfizer2. I also had a very odd set of a few (less than 10) really deep uncomfortable pinpoint pimples on my toe joint, and I have no idea if that was shingles or not. They cleared up in about 10 days. It was painful, but the pain was hard to differentiate from the overall neuropathy in my feet, which I’m pretty sure has also worsened (about 20% worse?) with Pfizer.
I’m wishing the survey had asked about neurological pain as well.
I’ll just add that the lysine was one of a number of supplements I took to support my wellbeing for taking the Pfizer vaccine.
I experienced worse nerve pain for four weeks after first AZ vaccine and after second vaccine nerve pain still ongoing and a lot worse six months after. Due for booster now. It will be different vaccine probably Pfizer or Moderna but feeling very apprehensive about having it. Feel that I should with still high infection rates in U.K. but the thought of it getting even worse is very worrying.
I’m in exactly the same position but mine was muscle pain.
I want to add that I got J&J in March. I got no protection- I produced no spike protein ( research test for antibodies). Note that in mid August an op ed in the NYT by the head of infectious disease pointed out that 33% of people who took J&J didn’t get a response- AND that while people by late Aug were advising boosters for the immune compromised, there were no recommendations for people who got J&J until just a few weeks ago. I snuck a first Pfizer shot and did make antibodies. I’ve been running a fever and am more exhausted from doing very little since 9/4- that’s 2 months and running.
Yes Carol
Got the same itchy red rash on arms and chest, my face also has reacted with raised red lumps.
After 2 shots of Pfizer I feel my immune system as a whole is under more stress which would make sense, and an underlying allergy to dust has surfaced.
The day after i got my second shot i was bed ridden after multiple years of minimal fibro problems. The fibro symptoms have calmed down since but I’m still not back to where i was before the second shot.
Did you have a rash? Maybe you had shingles. I did after 2nd Astra zeneca
Yes Susan I experienced some weird nerve pain too immediately after my first Pfizer shot which lasted for the next two weeks. Two and a half weeks after my second shot, I developed crazy pain in my foot after a slight stumble which was so intense I actually went to Emergency. The staff was mystified, as was the doctor I saw the next day. So I went on Dr. Google and stumbled across an article on “Small Fiber Neuropathy” describing the exact symptoms I was having. After more searching, I read an article that briefly mentioned SFN as a rather common reaction to some vaccinations. So there you go. Anyway, I am now close to seven months out from the first shot and the pain is pretty much gone except for the odd stab in my foot. Apparently it’s a thing! I hope your pain will keep improving.
I had AZ x2, then Pfizer booster, as many in the UK will have had, or will be having. Boosters are all Pfizer or Moderna. I cannot record them on this poll, as far as I can see. I have to choose just one.
Yes, happened to me also. Two side effects appeared on the same side of my body as I received the vaccination shots in, left arm. Left ring finger developed what feels like arthritis. I can no longer fit my wedding ring over the knuckle because it is enlarged and very painful. Joint pain in only that one finger/knuckle. Then the nerve pain in my leg like you described. Mine is on the back side of my left knee. It is a dull pain/almost warm sensation. Very uncomfortable, almost painful. I wonder if that is what fibromyalgia feels like? Both appeared after my second vaccination shot. It’s been five months and both are still the same with no improvement. Hope this helps.
A relative mentioned pain in legs after 1st vaccination (don’t know which product and assume she hasn’t taken a second shot)
I intend to get the Novavax vaccine now that it is available since the risks of side effects are much lower than with the other vaccines, it is a protein vaccine that uses old technology, unlike the mRNA vaccines, whose long-term effects are not known. Maybe next year, when you have a new survey, the Novavax vaccine will be listed. As yet, I have not had any vaccines as I suffer from CVID, and have both immune and auto-immune problems and I did not feel that any of the available vaccines would be safe enough for me. I do not know if I will produce sufficient antibodies to the Novavax vaccine but I am willing to give it a try and see if I do.
Hi Grace, I have CVID, too, and I’m just wondering how that factored into your decision – was it just the fact that you may not mount an immune response if you get the V?
I had a Hep B vaccine years ago that caused all of my autoimmune issues, and basically changed my life. I read if you have had previous reactions to Hep B and other vaccines, do not take Novavax as it is very similar. Just a heads up if you have had previous reactivity.
Does CONFIRMED coronavirus infection include a doctor’s diagnosis of coronavirus based on symptoms but not testing? It seems like it should given the lack of testing and the high proportion of negative tests early in the pandemic.
Also I hope you will be covering Solve ME/CFS’s vaccine side effect study. They are supposed to be releasing more data in a few weeks. There was a picture a few weeks ago that showed about 20% of ME/CFS and long-covid patients doing somewhat (15%) or significantly (5%) worse after the vaccine. Interestingly a large proportion of long-covid patients felt better after the vaccination but a much smaller proportion of ME/CFS patients did. From their October 26th email “Our Covid Vaccination Study, which also employs You + ME Registry data, researches how Covid vaccination affects the health of people with ME/CFS and Long Covid. We plan to share results in the next few weeks.”
Thanks James, unfortunately, I can’t find that email. I look forward to checking out and reporting Solve ME’s results. Thanks for asking about the “confirmed” COVID-19 infection. I suggested that a confirmed infection would include a positive PCR result, the presence of symptoms unique to the virus such as loss of smell/taste or a doctor’s confirmation.
More suggestions are welcome 🙂
I had loss of taste and smell intermittently decades ago, long before COVID.
So this symptom is not unique to COVID. Drs could not figure it out, as I told them it felt like a virus replicating!
Both my spouse and I have ME/CFS. And I did feel better for 10 days after moderna second dose.
Plan on getting my booster!
Thanks Cort, as always. I didn’t know that Solve ME/CFS were looking at this. I guess I’m on the wrong email list.
I had a paradoxical experience. My ME/CFS has been moderate – 6 of the last 7 years off work and planning to return to partial work this Fall. My first Pfizer vaccine was uneventful. The second, taken in July, had me in bed for 5 days, feeling fairly miserable. On day six though, I woke up and my symptoms had simply disappeared. The pain was gone, the fog was gone, I felt amazing. It took me a few weeks to realize that I wasn’t fully cured – if I push myself I will get PEMs and pain, but my limits have hugely expanded. I have started back to work (gradually) and am having no difficulties doing my desk job. And I am back to being a spouse and a parent, which is even more important.
I don’t understand it, but I will gladly take it….
So many different responses in the ME/CFS/FM community. Makes me think there are many pathways to these diseases. Congrats on the unexpected success!
That’s really good news Jonathan. Hope that improvement lasts a lifetime.
I don’t keep a symptom/severity diary, so I am unsure of my answers although I REMEMBER side effects that were very problematic since my usual level of functioning is pretty low.
I’m currently on the day after the Modern booster (1/2 full dose) and experiencing what I consider serious symptoms: cognitive, sore arm, headache, overall weakness, crushing fatigue.
Cort, I’m having technical problems with the poll. When I click on ‘view results’ it looks like there should be a whole lot of questions but when I go to the questionnaire to fill it in only these 4 questions show:
With regards to my CONFIRMED coronavirus infection:
With regard to my SUSPECTED coronavirus infection:
My vaccination status is
Which vaccines have you taken?
Update:
Problem solved. Must be with some oddball setting on my computer. The questionnaire expanded as it should when I used a different computer.
Hi Cort,
When I try to fill in the side-effects of my first AstraZenecca the Poll will only allow me to check in one symptom. When I click a second the first ‘unchecks’. The symptom list for after the 2nd shot works ok.
Regards, Jane
We had the wrong setting for that question which has been fixed. We did lose some of the early entries but because of the setting they weren’t really valid anyway. Thanks for letting us know.
I had the Moderna Vaccine in Feb of 2021. I took Ampicillin 500 mg before the vaccine 2 days ahead of time. Also Antihistamine
Benadryl (adult ) 2 days ahead of time before Vaccines.My 2nd in March I did the same thing. Had few side effects.Then when I took the Booster which I could not get until this month November- I was having pain and aches 3-4 weeks ahead of time. After 2-3 days after Booster I hit a new energy Vibe. I need to get the Booster earlier next time. I did the same before with Ampicillin and Benadryl. I think Vaccine however was wearing off a month before the Booster.
Thanks Cort. I had my first AZ in late September. And my second just a fortnight ago. So I think I was still experiencing side- effects from the first jab when I had the second. And still am. So I found it impossible to answer the side-effect time frame questions. Maybe I should have waited longer to do the survey?
I started feeling significantly better 5/6 weeks after my 2nd Moderna shot & it has maintained. I remembered that my CFS started with the worst virus I have ever experienced. I was living in Washington DC in the mid 80’s. My partner also had a virus at the same time, but did not seem to experience the same fatigue & brain fog that I did.
I have significant improvement after my first Moderna and it’s continued. People say I’m my old self. I do notice brain fog sometimes if I don’t sleep well. I was 53 when the virus from hell hit me and 59 when I had to quit work. Im 67 now and hope the Moderna affect lasts.
Fabulous to read some statistics, thanks for the polls. I followed the Klimas protocol with some modifications from my holistic GP. I wonder if a question about these sort of preemptive treatments may be added?
I feel it helped but have no way of knowing for sure.
Thanks Sandra. Jeffrey Lubell helped with this and two questions have been added.
I did not intend to get the vaccines. I wanted to see what the long term effects were. Then I landed in the hospital for ten days with double pneumonia as well as other lung problems. When I saw my PCP after I was discharged she put it to me very simply “with your lung issues, if you get Covid you will die”. So I opted to take a chance on the vaccines. I was very surprised. I have had the first two Moderna vaccines and I was prepared for the worst, but I had what I consider mild symptoms with both. Sore arm, mild fever, fatigue, body aches and pains. After the first vaccine they lasted about five days. After the second vaccine they lasted closer to ten days. I have Fibromyalgia, CRPS, RA, CFS, Sjogrens, Raynaud’s, Chronic Migraines and Spinal Stenosis, so I have numerous symptoms on a daily basis and to different degrees. Something is always flaring. I fully intend to get the booster. Sorry for writing a book here. Just my ten cents worth
Cort,
I am much worse off after Moderna shots about 6months ago now. Only a couple of weeks ago have I connected the decline to the shots, because at the time, the 1st shot made my arm sore for 2 whole weeks, and the 2nd seemed mild. Soon thereafter I developed a blown butt blood vessel, I assume because of a blood clot that migrated there. So, while healing from that, I lost 20lbs in 2wks!!! and so at 6′ and 160lbs I look like skin and bones. Trying to regain weight, but even though eating more protein and exercising what little I can, I am just maintaining. Fatigue now is way up, breathing is harder, and I have a hard time learning anything without paying for it about 24hrs later via forced on me bed rest naps. Well, anyway, I am still here, and still composing / playing my songs, and can still talk to others on the ham radio, but when I start yawning, that is partly how I know I am overdoing it. Diabetic numbers are stubbornly high around 250, but they don’t fluctuate as ‘normal’ diabetics. So, it is hard to tell that the shots did all this to make things worse, but it seems now like the logical conclusion as it is the simplest explanation. Thanks Cort for all you do, I try to read all you put up, but sometimes it takes me a while as I sleep 10~12hrs per day.
David
I had the Johnson & Johnson vaccine on April 8. on Apr 14 I was taken to ER with Blood Pressure of 193/99. I was in a total panic with difficulty breathing and a chest that hurt like the dickens. I was alone and reluctantly called 911, knowing they’d think all my discomfort was from the vaccine rather than some of it being ME/CFIDS/FM.
i had stopped my weekly 2.5 mg methotrexate to be vaccinated. I felt like I was a pressure cooker about to blow. I had them test for platelets and do a Doppler for leg blood clots. Then I went home because they needed the bed for a Covid patient. First thing I did was take my methotrexate to settle down my immune system. I was supposed to stay off it for at least another week, but I had to stabilize my systems. It worked. They thought I was nuts ! I didn’t care. I knew what I had to do. What I learned was that I wasn’t as compromised as I thought. My immune system was SO overactive, the one wee weekly pill was merely getting it back to a more normal level, not really suppressing it !
I will not have a booster !
Almost no side effects for me on both 1st and 2nd Pfizer jabs. Only thing was a tiny bit more fatigue and light headache for 1-2 days after the first one.
I have had CFS for 30 years, I suspect my immunity is effectively normal now, but I reckon it was very overactive in the first 7-8 years. I had a lot of food allergies, and had a bad reaction to a flu vaccination.
I wonder if people who are having bad reactions are generally in the earlier years of the illness, with overactive immune systems?
Interesting idea! I imagine that Nancy Klimas will be looking at this. Her vaccine study (if I got it right) will be revealing in all sorts of ways.
I have had M.E/CFS for over 40 years and have had severe reactions to both Astra Zeneca vaccines.
…me too, ME/CFS over 50 yrs, though undiagnosed until bad relapse in 2013. Reaction to the 2 astra zeneca jabs, 3 months apart, undramatic, but simply worsened usual symptoms and brought me right down. ME now quite severe.
Still struggling, and not in a hurry to get booster, technically due after 6 mths (Dec)
I did go through a period some yrs ago where my immune system rejected everything, no colds at all, but think I am more vulnerable these days. Don’t know whether I am likely to have made covid antibodies….2017 immune tests showed various anomalies.
(I had the jabs to get a health pass in France where I live and might not otherwise have risked doing this. Incidentally no medics here seem to have even clocked the existence of ME/CFS, though they have heard of Fibro.)
I would like to be able to assess whether I might fare better on Pfizer, if I go for the booster in due course.
Any evidence?
CORT! Breaking news, this study on a drug for fatigue in long covid! Let’s pray it works and could be applied to CFS!
https://www.google.com/amp/s/amp.theguardian.com/society/2021/nov/03/uk-launches-drug-trial-tackle-fatigue-long-covid-patients
Thanks Matthias! Appreciate it.
Great to see a more comprehensive survey BUT with one glaring omission. To be able to compare the impact of the vaccine vs the virus the question of “if you had the virus how severe was it”? Is absolutely critical! You ask how long symptoms lasted but that could mean lack of taste for 6 months. As you have asked about specific symptoms and severity for reactions to the vaccine, it really needs the same for the virus to be able to make any sort of comparison.
I’ve had AZ for first two shots and Pfizer for booster. However the question about which vaccine you’ve had only allows for one response.
I did too but can’t see any questions related to the booster. Disappointed about this as bad side effects from first 2, none apart from bit of arm ache with booster, Pfizer and in fact feeling better than have all year.
I would like to know how many patiënts get covid after vaccination?
Agreed. I’d like to know what % of fully vaccinated poll participants have gotten breakthrough cases, and the severity and longevity of their symptoms. I have no idea whether I am (or was) effectively vaccinated (Pfizer), despite completing the two shot series, given that people with ME/CFS. have somewhat compromised immune systems according to Dr. Klimas. (And some of my immune markers were atypical prior to the pandemic. My doctor has said that available antibody tests can not accurately inform me. The risk/benefit determination on whether not to boost would clearly shift, if the shots aren’t doing me much good in the first place. Is anybody investigating how well people with ME/CFS are building up immunity? Is anybody collecting breakthrough data for people with ME/CFS
patients or those with similar diagnoses?
I believe Dr. Klimas is.
In Europe, 80 to 90% of the population in many countries is vaccinated. Yet there is another corona wave. You see the same picture as before when there were no vaccines. In the hospitals you see the same picture as in Israel. The number of hospital admissions with vaccinated corona patients is increasing. Ranging from 30%, 55% to 80% in some hospitals.
The effectiveness has already dropped considerably after a few months and after half a year you see an effectiveness varying from 20% to 40%. I wonder how well protected you are after a year. 5% or 10%? I don’t know.
My conclusion for so far: vaccination is a lot less effective than stated by the vaccine manufacturers (their own research). Pfizer claimed 95% effectiveness against corona infection. In daily practice, it appears that about half of the infected persons were vaccinated. Most with pfizer.
In conclusion from our experts
There is not a definitive answer about whether pwME/CFS should or should
not get the COVID-19 vaccine. As the condition is highly individualised,
so too, is the response to the vaccine. Some have no effects, some only
the expected immune response, some experience improvement of symptoms,
and some a worsening of symptoms or a relapse. So what is appropriate
for the individual is best considered in conjunction with your GP or
specialist who has access to your personal medical history.
https://anzmes.org.nz/experts-talk-covid-19-vaccine-for-people-with-me-cfs/
Slightly confused how to answer as second shot gave me initial typical side effects for 24 hours but felt health improved for several weeks after. I answered positive for both improvements and side effects
I think I may have had covid in December of 2019 long before it was reported. I had gone to my Dr. and she also had what we were calling a virus she was wearing a mask..she prescribed medicines for me..but I still had this “virus” for 3 months..coughing, just feeling like crap. I am at high risk with heart and lung issues. I think it was in the US long before it was reported.
Yes, my friend also had covid in December 2019.
it might be useful for them to document it through titres.
and researchers involved in genetic signatures ffeom early cases may be able to follow its path/progression.
I had COVID in Jan 2020. Had no clue what it was. Seen by my doctor’s PA & she felt I was just dealing with flu, did X-ray, no pneumonia & put me on antibiotics. Dismissed my loss of taste & smell, shortness of breath & fever. Was ill for almost 3 months. Treated my symptoms holistically & finally recovered. Have had ME/CFS 30 years, FM 16years, along with asthma & numerous other issues. Definitely took a heavy hit from it.
I live in New Zealand and had an unusually bad ‘summer cold’ in late January 2020. I wouldn’t be shocked if it was covid.
We have a lot of Chinese immigrants and students in Auckland. So it could easily have been in NZ in January 2020, even though there are no official records that confirm that.
In Manitoba,Canada we had the option of getting mixed vaccines. My first shot was Phizer, with no side effects beyond a bit of soreness at injection site. My second shot, Moderna,resulted in side effects of a fever (as high as 102 degrees) for 12 hours. I took the Moderna shot because there were supply concerns about phizer. I will get a phizer booster as soon as it becomes available. Manitoba is rationing boosters according to age. No other longer term negative (or positive) effects from the shots beyond not getting Covid (yay!)
Over six months now. No improvement whatsoever. Devastated beyond comprehension. I’m at a level infinitely worse than I’ve ever experienced before by a massive margin plus my legs are affected in a way I’ve never experienced either. I didn’t need a wheelchair before. Now I do.
Hundreds of pounds I cannot afford on supplements once again. IV saline. Mast cell blockers. Hbot. NOTHING works.
One Pfizer shot. Still cannot believe it. It’s like I’m in a new nightmare all over again.
I never reacted to anything before. I could take meds, supplements, perfumes, cleaning product etc. No problems.
Cannot forgive myself for not listening to my gut feeling and instead being swayed by everyone else’s positive experience. I didn’t even need this shot because I never see anyone.
Will not tolerate anyone saying covid would be worse. What an insult.
I havent completed the survey as I find it difficult to know whether the vaccine was the cause of a decline in my ability to do things and brief resurgence of some symptoms or whether just random variation. I certainly suffered very short term adverse effects, but for the rest I don’t know. The SolveME study should help with this.
Pfizer now has an anti-viral for Covid that one can take after symptoms appear. Apparently it is near 100% helping people avoid death.
https://www.pfizer.com/news/press-release/press-release-detail/pfizers-novel-covid-19-oral-antiviral-treatment-candidate
I wonder if it or something like it can apply to treating ME/CFS.
I was bit too enthusiastic on my numbers, it is 89% effective, not near 100%.
I had the 1st Pfizer shot in January 2021 and the 2nd in April 2021. It is hard to decide just what causes symptoms and relapse, because I have ME/CFS, fibro, MCS and other auto-immune diseases. My diet is very strict: no fruits, a couple of cooked veggies and a lot of rice and Cream of Rice cereal and peanut butter and lots of Evian. I felt better after the 1st shot for a couple of days, and then became sicker, with aches, pains, more food allergies, and more down time. Basically, maintenance only, and needed some help. I delayed the 2nd shot for about 6 weeks, and after that shot was markedly worse. Just flat out exhausted, ADLs only, and more depressed. But since I live in an Independent Living facility, we are ‘encouraged’ to get the booster, and surprisingly I had very little systemic reaction to that one. But my arms, especially my left harm have become very painful, feeling like I had the shot yesterday for weeks.
And here is the most extreme and unusual thing that has occurred almost directly after the 2nd shot. I became infested with mites, the kind that almost everyone has, but most others have no symptoms. I didn’t connect the dots at first, but putting 2 + 2 together, I think the shots did something to trigger a massive invasion of most likely Demodex mites. Mites I can actually see. I started getting nosebleeds which were a sign they were feasting in my nose. Lots of blood. Bloody attacks to my ear, which have reduced my hearing noticeably. My voice has changed, it’s harder to talk, It’s harder to breathe and swallow, and my vision has changed, due to the mites. I have to wash all bedding and clothing every day, threw away a bed and mattress, and do extensive cleaning in the apartment every day. We bought a dehumidifier because our research showed mites can’t live or become active below about 35F. I bought a Roomba vacuum for the floors, and a hand-held furniture and bed vacuum. I’m terribly exhausted, falling asleep during the day, in between chores. This is awful. I do believe that the Pfizer shots triggered this horrible result, but I can’t prove it. I only know I’m sicker, my back is causing new problems, I ache all over from head to toe and I itch.
Extenuating circumstances and existing circumstances also include my age, 82. I’ve been sick with ME/CFS since 1987 when it was still called CFIDS, so my battle has been going on for a long, long time. I’ve met the doctors from Incline Village. But at this moment I’m blaming the vaccines for the horrible infestation that only I have, not my husband, no other resident (350 residents). He has a healthy immune system, although he does have fibromyalgia, too. What a mystery. And where does it go from here? I’m losing weight now, no appetite, spend all my time working just to have a pace to sleep. Doctors in the area not particularly knowledgeable, and I’m not able to travel. I have a visiting nurse but she, like everybody else, is confused and frustrated. I am lucky to have had this time to write this essay. I’ll pay for this, but wanted to tell my odd story. Anybody else have anything similar? Mites, strange rashes, unidentified itches and black or red spots on their body? Thanks for listening and letting me let off steam today. As for a support system – still looking. If anyone knows of a good medical resource, allergist, immunologist in the San Diego area, please let me know.
In response to the number of people reporting an unusually bad cold or flu in Dec 2019 to early 2020, I live in NYC and we had a really bad cold that circulated during that time period; I got it in the beginning of January. Even radio personalities were taking medical leaves of a week or two. But — while I don’t know about the radio hosts – when I was tested for covid before getting the vaccine, I showed no antibodies. I felt so miserable during that “flu”, as I called it, that I don’t recall even noticing whether I lost my taste or smell. But the intense period of it was less than two weeks.
I’ve had ME/CFS estimated functional capacity 30% of what it was before I got sick many years ago.
I wonder how far out from a Vax one can attribute health issues as damage from the vaccine. Do all side effects have to be in the first two weeks. Can some show up months or years later?
I say this because someone in our family, very fit, eats impeccably, is a marine, master seargent had the Vax about 3 months ago.
Out of the blue about two weeks ago, she developed heart palpitations. She’s now just been diagnosed with heart cardiomyopathy. As I say, fit, super healthy, marine.
Of course it could be completely unrelated but how does one even begin to make such a correlation proveable?
Forgot to mention. Just turned 41, so fairly young
I took the Moderna vaccine in January and February and just had the booster a week ago. My symptoms lasted 4 days after the first vaccine and a week after the second and third. They were mostly flu like symptoms of fever, headache, muscle pain and fatigue. I also had a massive allergic reaction at the injection site, with redness, swelling, heat and itching, for which I used Triamcinolone. I was also taking ProBoost at the time of the third shot. I don’t know if it helped me recover more quickly or not.
I have had Fibromyalgia for 30 years, also have ME, sleep apnea, POTS, diabetes. I manage everything with diet and muscle response testing.
I am 89, so definitely in the high-risk group. I’ve had the Pfizer shots and had a strong reaction to shot #2. I was very short of breath with a pounding heart, extremely exhausted, and had terrible pain in my thighs. I was not able to be up at all for the first 4 days, and it was months before I was anywhere near my previous very limited level of activity.
I have fibromyalgia/MECFS (diagnosed 20 years ago) and am mostly house bound. However, I try to take short walks and am active (sort of) around the house on most days with help of pain medication.
I am very apprehensive about getting the booster. My second shot was nine months ago. My primary doctor said I could wait a little longer and ordered the antibody test. I feel I need to get the third shot because of my age. I’m planning on asking PCP about getting the Covid shot for 6-11 year old (Pfizer 10 mg?) – one shot only.
I got my flu shot last week – but got the regular dose and not the ‘over 65’ larger dose – had an itchy red arm but otherwise OK.
I’m 72 and have had MECFS for over 40 years. . I had AZ No 1 and was in bed with moderate side effects for about 3.5 weeks. Then a week later I suddenly felt dramatically better with my MECFS. I had no pain and a real upsurge in energy. This lasted about 8.5 weeks. Then I got AZ No2, had similar moderate side effects but only for about 10 days when I started feeling better. However, this only lasted a few days, then I had crash symptoms for a couple of days, then felt better for a day and then the side effect symptoms came back for a few days, then I felt better for a day or two. This has been going on for about 10 weeks and my crashes are getting longer. I recover for a day and then down again. Since AZ No 2 this has been my new normal. But I seem to be getting more sever neurological symptoms and I also have had severe hip pain…. Sigh. The AZ No 1 gave me such hope – but now after AZ 2, I am worse off.
The survey doesn’t have anywhere to record getting better after AZ 1 but worse after AZ 2. I’m in Australia and at the moment only Pfizer is being offered as a booster. I have healthy friends who had AZ for the first two and the a Pfizer booster and had a severe reaction to the booster for a few days. So I am pretty nervous about the booster. But then a number of healthy friends who were double vaxxed have been getting quite sick with Covid anyhow. Not needing to be hospitalised but still quite sick. It’s scary.
I read an article in which it said: ‘Vaccine effectiveness against infection for the fully vaccinated decreased with increasing time since vaccination, declining from 88% (95% CI 86–89) during the first month after full vaccination to 47% (43–51) after 5 months’. I read other countries are giving boosters. I wish I could get one.
My country only has a third vaccine for severily immunocompromised via their specialists. Unfortunately many ME patients are often not treated by specialists here. In a press conference, in which they are now speaking of giving a booster to people over 60 yrs, the minister of Health said in a reaction to ‘the question ‘why not give a booster to vulnerable people below 60’ that they ‘think’ they are at risk, but that findings of the Health counsel do not show that.
I would like to know how this is in other countries? In which countries are ME patients eligible for a booster? Are ME patients on lists under immunocompromised? Have there been studies about vaccine effectiveness in ME patients?
Looking forward to seeing the Survey, updated.
My Dr. said that he believes my viral conditions in ME/CFS will be activated if i got the vaccinations. I bet those that feel worse is having their Epstein Barr Virus or other viruses being awakened in their system or further replicated.
An article found on this website by a poster (THANK YOU!!!) said that if you were ever exposed to Mold-Toxic, it will be reactivated by the Covid vaccination(sss). That article will hopefully be what makes me achieve an approval to get an Exemption.
Not willing to be a Guinee Pig. I hope i don’t get fired from my job….awaiting Exemption results of my job being “saved” or if they decide to let me go. This is beyond extremely stressful.
HAS ANYONE HAD A MEDICAL OR RELIGIOUS EXEMPTION APPROVED, OR DENIED? WHAT WERE THE REASONS FOR THEIR APPROVAL OR DENIAL?
I can almost assure you that there is no medical evidence for the idea that covid vaccinations reactivate mold toxin exposure. For one thing mold exposure gets very little study. I personally know someone who’s illness was likely tripped off by mold exposure who tolerated the vaccines just fine.
Dear Cort! Thanks – again – for your great work which really makes a difference. I just would be very grateful if you could answer one little question directly this weekend because I have a new slight conflict. Actually I wanted a Biontech Vaccine but now here in Germany it is very probable at the moment you only get Moderna.
I was really glad about the long awaited figures concerning how long the side effects after the second shot last – and generally relieved that few percent marked “longer than 6 months”. But what I don’t understand:
With Pfizer the results state: “Symptoms from the second shot lasted for / Longer than 6 months / 8 % / 2 Persons”. How can this be the case given that generally 317 people took Pfizer and 188 answered this specific question. It seems that either the percentage is too high here or it must be way more than just two persons who still suffer from the side effects after 6 months?
I ask this because if it is only 2 persons for Pfizer – then Moderna seems to be more “dangerous” since there it says
“Symptoms from the second Moderna shot lasted for / Longer than 6 months / 7% / 7 persons” – with here just 115 participants total or 84 persons that answered this question.
So I am confused – a short answer would be very welcome since Monday I might geht my first shot…
Dear Cort, I am a litte confused because the poll above does not seem to offer a choice for entering lasting vaccine side effects, but from the comments it seems that it did?
— So for now, I double post my update comment from under the original MECFS/FM vaccine poll, as it seems better placed here:
Update 5 months after 2nd biontech (Pfizer) shot:
1st shot had a 2-week vaccine reaction (among other symptoms a strong heaviness in the body), 2nd shot was more normal with a 2-3 day reaction.
5 months after 2nd biontech shot, so far 2 possible vaccine side effects have remained:
1) a change in female cycle (much stronger period including what looks like big blood clots or pieces of membrane) – I wasn’t thinking vaccine but gynecologist said she saw lots of – mostly temporary – changes in cycle following Covid vaccine (including stronger period, or no period at all, and one severe case of constant bleeding needing medical attention), 2nd gynecologist and GP confirmed there were reports of this phenomenon following vaccine (not ME/CFS-specific). Period volume was less this time, so might go back to normal.
2) Onset of shortness of breath. – Despite living with ME/CFS, I don’t remember I ever had shortness of breath, but have it now and first made a written note of it around the time after 1st shot. I therefore attribute it to vaccine with some probability. If so, I cannot say if it is a direct or indirect effect of vaccine (i.e. onset of new ME/CFS symptom as a consequence of vaccination). (Of course, as is always the case with ME/CFS, one can never fully exclude it could be a derioration of ME/CFS due to some other factor such as stress around the vaccination). Because of time of onset and (unverified) statement by a therapist that shortness of breath was a reported vaccine side effect, a vaccine effect seems most likely to me.
2 relatives of mine with ME/CFS-like illness seem to have had no problems with vaccination.
Cort, maybe it would be interesting to do a 2nd poll, e.g. at 6 months after vaccination to see how often vaccination effects have lasted or resolved? Kind regards!
This poll doesn’t account for mixing and matching. For example, those who got the J&J are being advised to get the Pfizer or Moderna for the booster, but there is no place to indicate how one did if they got an mRNA vaccine following the J&J.
In the questionnaire, please add taking a different brand of booster shot. ie I got the J&J shot, but got the Phizer booster.
Although I ticked I’d had 2 vaccines plus a booster – there were no questions about the 3rd booster? (It was different to my first two, AZ first two, Pfizer 3rd)
I had first noticed that after very intense exercise (trail running, mountain biking) I would feel really bad but not until hours later. Sometimes it would last for a day or two. I knew something was wrong but the doctors just said “it doesn’t make sense. Eat more before and after a run. Drink a lot of water. ” All of which I was doing. After my vaccine I felt the same way but it lasted 2 weeks. Then I became neurologic. Dizzy, couldn’t walk well, tinnitus was insane, couldn’t write my name, electric “shocks” up and down my arms and legs, diarrhea for 3 months, heart palpitations. All my tests (MRI’s, blood work, echocardiograms, EMG’s etc) were normal or slightly abnormal but no answer. I felt I had a dysautonomia of some sort and asked to be tested. I had a tilt table test and had orthostatic intolerance. The doctors said it was a vaccine reaction but they didn’t understand why it was so severe. I accidentally found Post Exertional Malaise and realized that is what I had previously. I met with an infectious disease doctor and told him I thought I may have ME and he said “yes, you certainly fit the profile. ” The Post Exertional Malaise and Orthostatic Intolerance were the diagnosis. Now trying to figure out what started it all – if it can be found.
Keep tuned, Paul. It sucks but if you had to get this – now is the best time. Lots of research on long COVID underway. Thanks for sharing your story.
It may be hard to figure out what started it all – long COVID has taught us that you could even have had an infection which you didn’t notice.
Hello, i would be very grateful for some thoughts; i opted out of C vacc here in the UK, not because I am anti vacc, but because as living alone with no social support network and medium ME with frequent PEM from even doing the basic existential daily stuff, I cannot afford to get worse even for a week. I am also truly petrified at the thought of worsening my condition permanently as i already seriously struggle with the why carry on q.
I cannot understand why there is this nearly obliterating all else vacc drive, which already means having to be in step with main vaccs, and boosters and more boosters, potentially lifelong; instead of focussing on designing more antivirals to be given as and when needed? It would also reduce the NHS ward load, GP load etc.
I would love to try a vaccine to have a chance at an improvement, very exciting! So happy for the lucky ones!!, but i cant take the risk. US is buying the antivirals to be dispensed together with testkits free from pharmacies on testing positive.
The UK is taking all free testing away and has very narrow access criteria for antivirals, as well as somewhat condemning ME/FM/CFS ppls informed choices of opting out of vaccines, by not agreeing to the Covid Pass vaccine exemption on medical grounds. The reason i was given after prolonged dialogue ( 1yr) with my GP, who has herself supported my decision, but cannot back my decision within the NHS construct/ system without being disciplined should i contract Covid…now, again, why one over the other? If i did contract Covid, and had access to antivirals, wouldnt it be the same symptom to suffer from Covid when vaccinated, as ppl do, plus transmit it freelt, as getting Covid and treating the symptoms with antivirals to mitigate severity. I have been shielding for 2 yrs now, am literally disappearing in isolation and disconnect, i need to make an efgort to see someone, so, yes, i might still contract a version of Covid, i wear masks and gloves, but if i do, why cant i get antivirals? I must be missing something, i really dont get it. Thanks for listening.
2 Astra Zeneca went well, felt a little better for a week each time. Then a Pfizer booster which set off the old Hashimoto’s very badly. I suddenly had these 2 eggs on the front of my neck. I was unwell for a year, now 20 months later they have shrunk somewhat but not ok. I refuse vaccines now.
I feel a bit frustrated this doesn’t include boosters I had Moderna booster and was exhausted ached all over and felt unwell for a couple of months- shortly after that the SVT ( palpitations /fast heart beat ) that I have had my whole life went out of control – I ended up with 3 hospital admissions and then an ablation.
The cardiologists commented he seemed to have seen a spate of women my age with similar stories. Is there any research being done on this does anyone know?