Decisions. Decisions. Whether or not to get vaccinated is a difficult one for the many people in the chronic fatigue syndrome (ME/CFS) community, in particular, who have stayed away from any vaccines, sometimes for decades.
With almost 1,700 people taking the ME/CFS/FM Coronavirus side-effects poll, it’s a good time to take a look at this knotty question. With 2.4 million vaccinations a day occurring in the U.S., more and more people are confronting whether or not to get vaccinated.
It’s also time to start a new poll – “The Coronavirus Vaccine Side-Effects Poll for the Severely Ill” – to see if we can get some data on how the more severely ill among us are faring with the vaccine.
Poll Results
Around 60% of the respondents reported having chronic fatigue syndrome (ME/CFS) or fibromyalgia, leaving 40% who did not report having either one – a result that I have trouble understanding given that I would be surprised: a) if the poll reached outside the ME/CFS/FM communities and; b) given that I don’t know why other people would want to participate, anyway. Other prominent comorbid conditions included irritable bowel syndrome (IBS) (36%), migraine (27%), spinal issues (15%), other (15%) and orthostatic intolerance (14%).
Six percent of the respondents also reported they were a 9 or 10 on the functional capacity scale (FCS). They would not meet the criteria for ME/CFS, but they could have met it for fibromyalgia.
Most respondents did report have activity limitations. Eighty percent reported having at least some daily activity limitations (6-7 on the FCS). Sixty-three percent (5 or less on the FCS) reported having at least “moderate to severe symptoms with exercise or activity”. Twenty-eight percent reported that, at best, they were “unable to leave house except rarely”, and were “confined to bed most of the day” (3 or less on the FCS).
Coronavirus Vaccines
Coronavirus VaccinesThe poll is now tracking four vaccines: Pfizer, Moderna, AstraZeneca and Johnson & Johnson. (The number of participants in each poll is given by n=”x”).
Pfizer
The Pfizer vaccine is an mRNA vaccine.
The Gist
- The Pfizer, Moderna, AstraZeneca, and Johnson & Johnson coronavirus vaccines are effective at preventing the coronavirus from causing hospitalization and death.
- About forty percent of people in the Side Effects Poll did not report they had either fibromyalgia or chronic fatigue syndrome.
- Eighty percent of people in the poll did, however, report activity limitations. Sixty-three percent reported having at least “moderate to severe symptoms with exercise or activity”; 28% percent reported that, at best, they were “unable to leave house except rarely”, and were “confined to bed most of the day”.
- Most people are breezing through the first Pfizer/Moderna vaccination shots with about 2/3rds reporting mild or non-existent symptoms. Many more people reported experiencing more severe symptoms with the first shot of the AstraZeneca vaccine (47% reported moderate symptoms and 31% reported severe symptoms). Still, seventy-plus percent of people trying the first shots of any of these three vaccines were over their symptoms within a week.
- The second Pfizer/Moderna vaccination shot is producing more severe symptoms. Recovery is usually as quick as with the first shot, though, with seventy-plus percent of respondents reporting recovering within a week. (Too few people reported on the side effects from the second AstraZeneca shot.)
- Four to nine percent of people taking the second dose of the Pfizer or Moderna vaccine reported having symptoms a month later.
- Those worried about the second vaccination shot might want to try the first one and see how it goes as the first Pfizer vaccination shot is reportedly about 50% effective against the virus.
- People with ME/CFS/FM reported that recovery from actually having the virus was often difficult. Approximately forty percent of ME/CFS/FM patients who reported they thought they’d come down with the coronavirus reported not being back to baseline three months later.
- Most people are having a far easier time getting over any side effects from the vaccine than getting over the coronavirus.
- Early data suggests that long haulers might benefit from getting vaccinated.
Second shot – As expected, symptoms were more prominent after the second shot. Thirty-four percent reported having no or mild or symptoms, 43% called their symptoms moderate, and 23% called their symptoms severe (n=329). While side effects from the second shot were more intense, most people recovered as quickly from the second shot as they had from the first. Seventy-one percent reported their symptoms were over within a week, 9% within 2 weeks, 10% up to a month, and 9% were still having symptoms 30 days later (n=275).
Moderna
The Moderna vaccine is an mRNA vaccine.
First shot – Sixty-six percent reported their side effects were mild or non-existent, 27% reported moderate symptoms, and 9% reported they were severe (n=466). Eighty-four percent reported they were over any side effects within a week, 7% recovered within 2 weeks, 5% (2 people) within a month, and 3% (1 person) reported still having symptoms after a month (n=346).
Second shot – Eleven percent reported mild or non-existent side effects, 55% moderate and 31% severe (n=241). As with the Pfizer vaccine, the side effects from the second shot were more intense, but most people recovered as quickly from the second shot as they had from the first. Seventy-four percent reported they were over side effects within a week, it took up to two weeks for 11%, up to a month for 10%, and 4% (9 people) were still recovering a month later.
AstraZeneca
The AstraZeneca vaccine is a recombinant adenoviral vector vaccine.
First Shot – A smaller percentage of people reported mild or no symptoms from the first shot (22%) compared to Pfizer/Moderna vaccines (60/66%). Forty-seven percent reported moderate symptoms and 31% reported severe symptoms (n=348). While the initial symptoms were more severe, 70% reported they were over their side effects within a week. Twelve percent reported it took up to two weeks, 9% reported it took up to a month, and 9% reported they were still experiencing them a month later (n=312). Those numbers were similar to the Pfizer and Moderna vaccines.
Second Shot – Unfortunately, with only 11 people responding, it was hard to tell how the second shot was doing. Sixty-three percent reported they were over the side effects by the first week, 18% by two weeks and 18 percent (2 people) reported they were still experiencing them a month later. Eighteen percent reported recovering within a week, 53% (9 people) reported having moderate symptoms and 29% (5 people) reported having severe symptoms.
Johnson & Johnson
One shot – Only 30 people reported taking the Johnson & Johnson one-shot vaccine. Seventeen percent reported their symptoms as mild or none, 67% reported moderate symptoms, and 13% (4 people) reported severe symptoms. Recovery was very quick thus far, with 95% reporting they were over their symptoms within a week, and 5% (1 person) reporting it took up to a month.
Decision Tree
To get or not to get the vaccine?
The question whether or not to get a coronavirus vaccine hinges on two issues: the risk of getting sick from the vaccine versus the risk of getting sick from the virus. It’s an odd risk to assess. It’s possible you may never get the virus.
If you get the virus, you run some risk of a very negative result – being hospitalized, dying or a severe relapse. There’s no evidence, on the other hand, that getting the vaccine is going to kill anyone, but you do run the risk of a relapse.
Your risk of getting the virus in the U.S. should be steadily declining over time. The IHME predicts that if social distancing remains as it is, infection rates should steadily decline over time. If social distancing wanes, though, it predicts that infections will increase in the U.S. until May when they begin declining again.
Your risk of getting a nastier form of the virus appears to be increasing, though. The B.1.1.7 variant from the U.K. appears to be about 65% more deadly than prior forms of the virus. Right now that variant accounts for up to 30% of U.S. cases. It’s expected to reach 50% of U.S. cases over the next couple of weeks. When it reached 50% of cases in Italy, the virus exploded, and now half of Italy is in strict lockdown. (It’s not at all clear that this is going to happen in the U.S. with its higher vaccination rates.) Thankfully, thus far, the Pfizer, Moderna, AstraZeneca and Novavax vaccines appear to be effective against this variant.
Another thing to think about is how long the coronavirus will be around, albeit in low numbers. The rise of the variants has led some experts to posit that it will be around for quite a while. The only way to completely stop the virus is to develop herd immunity which will require that 75-80% of the population to be vaccinated or have immunity to it.
The vaccines don’t stop people from getting infected. Instead, they boost the immune response so that it’s more effective at fighting off the virus when we get infected. It’s not clear if the vaccinations prevent the milder symptoms which many people with long COVID experience when they get infected. It stands to reason that because the vaccines boost the immune response, they might reduce the incidence of long COVID or the possibility of an ME/CFS relapse, but we don’t know.
Nancy Klimas reports that her patients are tolerating the vaccines well. She premedicates with mast cell stabilizers ( eg quercitin) antihistamine and NAC and suggests that people with mast cell activation syndrome may need low dose prednisone and a blood test to assure an adequate response. They should discuss this with their clinician. Mast cell activation patients should also get their vaccine in a medical setting ( vs Walmart).
Check out more of Nancy Klimas’s recommendations on whether or not to get vaccinated, and if you get vaccinated – how best to prepare for that – Klimas – Coronavirus recommendations.
Variant Mischief
Another factor to consider is that the more quickly we stop or inhibit the virus, the fewer variants will be produced. The longer it’s out there in large numbers, the better chance that a really nasty variant gets produced.
Neither the Pfizer, Moderna, Johnson & Johnson, AstraZeneca nor Novavax vaccines works nearly as well against the B.1.351 variant from South Africa. (Pfizer and Moderna are working on booster shots to combat this variant). It’s present in about half of the U.S. but in low numbers thus far.
The Brazilian and South African variant can re-infect people who already had the virus. A variant just popped up in France which is not detected by the standard PCR tests used to detect the coronavirus.
Preliminary evidence suggests that the vaccines may reduce infectivity, thus reducing the spread of the virus. It’s clear that the sooner we get the SARS-CoV-2 coronavirus back in the bottle as much as possible, the better for all of us.
ME/CFS/FM Patients’ Experience with the Coronavirus
Another point on the decision tree concerns how well people with ME/CFS/FM do when infected with the coronavirus. If they’re able to easily fight it off, then getting the vaccine becomes less of a concern. If they’re having trouble fighting off the virus, then getting the vaccine becomes more of a priority.
An earlier poll asked people with ME/CFS/FM how they’d fared with the coronavirus (or an illness they assumed was the coronavirus). About 200 people took the poll.
A month after the infection, 38% reported they were back to baseline, but 38% reported they were either moderately or much worse off than before they’d been infected. Surprisingly, three months after the infection, those numbers held steady. Three months later, only 40% reported they were back to baseline, but 38% reported they were still either moderately (16%) or much worse off (22%) than before the infection. That poll suggested that quite a few people with ME/CFS were having trouble trouble getting over the virus.
Seventy-plus percent, on the other, hand reported they were over the side effects from the first or second shots of the Pfizer or Moderna virus within a week.
If these polls are accurate, far more people with ME/CFS/FM are having more trouble fighting off the virus than recovering from the vaccine. A recent finding may provide some relief for those with ME/CFS/FM + long COVID. It suggests that some long haulers may improve after getting vaccinated – perhaps because the vaccine is giving their immune system the boost it needs to remove the small bits of the virus which remain.
Takeaways
- The Pfizer, Moderna, AstraZeneca, and Johnson & Johnson coronavirus vaccines are effective at preventing the coronavirus from causing hospitalization and death.
- The only way to stop the virus completely is to develop herd immunity to it. That is believed to occur when 75-80% of the population has developed immunity to it via vaccination or by having been infected before.
- About forty percent of people in the Side Effects poll did not report they had been diagnosed with fibromyalgia or chronic fatigue syndrome. (The wording of the poll may have lowered the percentage of people who answered yes to this question.)
- Eighty percent of people in the poll did, however, report activity limitations. Sixty-three percent reported having at least “moderate to severe symptoms with exercise or activity”; 28% percent reported that, at best, they were “unable to leave house except rarely”, and were “confined to bed most of the day”.
- Most people are breezing through the first Pfizer/Moderna vaccination shots with about 2/3rds reporting mild or non-existent symptoms. Many more people reported experiencing more severe symptoms with the AstraZeneca vaccine (47% reported moderate symptoms and 31% reported severe symptoms). Seventy-plus percent of people trying the first shots of the three vaccines are over their symptoms within a week.
- The second Pfizer/Moderna vaccination shot is producing more severe symptoms. Recovery is usually as quick as with the first shot, though, with seventy-plus percent of respondents reporting recovering within a week. (Too few people reported on the side effects from the second AstraZeneca shot.)
- Four to nine percent of people taking the second dose of the Pfizer or Moderna vaccine reported having symptoms a month later.
- Those worried about the second vaccination shot might want to try the first one and see how it goes as the first Pfizer vaccination shot is reportedly about 50% effective against the virus.
- People with ME/CFS/FM reported that recovery from actually having the virus was often difficult. Approximately forty percent of ME/CFS/FM patients who reported they thought they’d come down with the coronavirus reported not being back to baseline three months later.
- Most people appear to be having a far easier time getting over any side effects from the vaccine than getting over the coronavirus.
Severely Ill Vaccine Side-Effects Poll
This poll is for people with ME/CFS or FM who are at 30 or below on Dr. Bell’s 0-100 Functional scale. Twenty-eight percent of people fit this profile in the vaccine side-effects poll. That approximately fits the 25% of people with ME/CFS who have been reported to be housebound.
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.
If you fit this description and already took the vaccine side-effects poll, please take this one as well.
Results can be found by clicking on the blue “Results” link at the bottom of the poll.
Coronavirus ME/CFS and FM Side Vaccine Effects Poll for the Severely Ill
This poll is only for people who have ME/CFS and/or FM and who score 30 or below on the Bell Functionality Scale.
Your statement that “There’s no evidence, on the other hand. that getting the vaccine is going to kill anyone but you do run the risk of a relapse.” is patently untrue.
February 18, 2021 release of VAERS DATS:
Number of Injuries Reported to CDC After COVID Vaccines Climbs by Nearly 4,000 in One Week
Between Dec. 14, 2020 and Feb. 18, 2021, 19,907 reports of adverse events have been reported to VAERS, including 1,095 deaths and 3,767 serious injuries.
About a third of the deaths reported occurred within 48 hours of vaccination, and 48% of the people who died became ill within 48 hours of being vaccinated.
About 21% of the deaths were cardiac-related.
(Scientists believe that the spike protein that the body is instructed to make by mRNA vaccines like those developed by Pfizer and Moderna have the potential to cause microvascular injury (inflammation and small blood clots called microthrombi) to the heart, brain, liver and kidneys in ways that were not assessed in the safety trials.)
Of the reported deaths, 966 were reported in the U.S. and 129 outside the U.S. The average age of the deceased was 77.8, the youngest was 23. Of those who died, 53% were male, 46% female and 1% of the reports did not include gender. Of those who died, 56% received the Pfizer vaccine, and 43% got the Moderna vaccine.
The number of serious adverse events reports increased by 641 this week, to a total of 3,767 between Dec. 14, 2020, and Feb. 18. Adverse reaction reports from the latest CDC data include:
160 reports of adverse reactions affecting pregnancy, including 47 miscarriages/preterm births
1,135 anaphylactic reactions, 64% of which were reported after a Pfizer vaccine and 35% after the Moderna vaccine
257 reports of Bell’s palsy facial paralysis (Pfizer 71%; Moderna: 29%)
By comparison, during the same time period — Dec. 14, 2020 – Feb. 18, 2021 — VAERS received reports of 83 deaths following flu vaccines.
In Israel:
A re-analysis of data provided by the Israeli Health Ministry concluded that Pfizer and BioNTech’s Covid vaccines have already killed “about 40 times more (elderly) people than the disease itself would have killed” during a recent five-week vaccination period.
Dr. Hervé Seligmann, a faculty member at Aix-Marseille University in France demonstrated using a full mathematical analysis that among “those vaccinated and above 65, 0.2% died during the three-week period between doses, hence about 200 among 100,000 vaccinated.” “This is to be compared to the 4.91 dead among 100,000 dying from COVID-19 without vaccination,” he added.
Seligmann and his colleagues found that the situation is even worse for younger people who are jabbed with Pfizer’s vaccines. Among those under the age of 65, the vaccines killed 260 times more people than would have died from the virus itself.
“This scary picture also extends to those below 65,” the researchers wrote. During the five-week vaccination process, “0.05% meaning 50 among 100,000 died.” “This is to be compared to the 0.19 per 100,000 dying from COVID-19 (who) are not vaccinated … Hence the death rate of this age group increased by 260 (times) during this five-week period of the vaccination process, as compared to their natural COVID-19 death rate,” they added.
Seligmann and his colleague went on to stipulate that these figures are likely to be far too low because they only account for deaths that occurred in “that short time period” and “do not include AVC and cardiac events (strokes, heart attacks) resulting from the inflammatory reactions.” The numbers also do not “account for long-term complications,” he further explained.
“In other words, it is just plain stupid to get a Covid-19 vaccine based on the science. The disease holds almost no risk of complications for the vast majority of people that contract it with a survival rate of over 99%, and yet millions of people out there have been convinced to take experimental vaccines that their manufacturers are not liable for in the event of injury or death.”
“Keep in mind that these reported injuries and deaths only include those that occurred shortly after the vaccines were administered. It remains to be seen how these vaccinations affect everyone else mid- and long-term.”
As revealed by America’s Frontline Doctors (AFLDS), the antibody-dependent enhancement (ADE) effects or the pathogen priming of these vaccines do not provide any protection whatsoever against the virus and will actually make people who receive them more susceptible to disease later on down the road.
“Instead of protecting the person, [it] causes a more severe or lethal disease when the person is later exposed to SARS-CoV-2 in the wild,” AFLDS determined. “The vaccine amplifies the infection rather than preventing damage.”
Because of this, AFLDS is strongly discouraging people against getting any of these experimental vaccines. Recognizing the dangers involved, Seligmann and his fellow researchers are doing the same, calling this mass vaccination campaign “a new Holocaust.”
UK Data Show 402 Reports of Deaths Following COVID Vaccines
Government data show that, compared with the Pfizer vaccine, there have been 43% more reports of injuries related to the Oxford-AstraZeneca vaccine in the UK, including 77% more adverse events and 25% more deaths — but no red flags from UK regulators.
Between Dec. 9, 2020 (when the first COVID vaccine was administered in the UK) and Feb. 14, 2021, 402 deaths following COVID vaccines have been reported to YellowCard, the UK government’s system for reporting side effects to COVID-related medicines, vaccines, devices, and defective or falsified products.
MHRA data so far lists a combined 402 fatal reactions to the Pfizer BioNTech (197) and Oxford AstraZeneca (205) products. According to the MHRA publication, the data was updated Feb. 14 when approximately 8.3 million Pfizer and 6.9 million Oxford AstraZeneca products had been administered.
When it comes to fatalities, the Oxford-AstraZeneca product records a rate of 3 in 100,000 while Pfizer has 2.4 in 100,000 which is again 25% higher for Oxford-AstraZeneca.
Tabulated, as of 14 Feb:
Pfizer BioNTech: 26,823 reports, 77, 207 reactions and 197 deaths (per 8.3 million doses).
Oxford Astra Zeneca: 31,427 reports, 114,625 reactions and 205 deaths (per 6.9 million doses)
Pfizer BioNTech: Death rate: 1 in 42,131
Oxford AstraZeneca: Death rate: 1 in 33,659
More Vaccine Deaths Across the World:
46 nursing home residents who had received their first dose of Pfizer-BioNTech’s fast-tracked vaccination against COVID-19 at the beginning of January had died by the end of the month, Spanish media have reported.
At another nursing home in the same southwestern Spanish province, in Novo Sancti Petri, in Chiclani, 22 elderly residents died and 103 were infected following a vaccination campaign.
Similar outbreaks and death clusters following vaccination have been reported across the globe, including:
10 deaths in a German palliative care patients within hours to four days of COVID-19 vaccination were deemed a “coincidence.”
22 of 72 residents of a nursing home in Basingstoke, England have died following vaccination.
24 seniors at a nursing home in Syracuse, NY were reported to have died from COVID-19 as of Jan. 9 despite having been vaccinated beginning Dec. 22.
29 elderly people died in Norway shortly after receiving Pfizer’s vaccination.
13 deaths among 40 residents following vaccination at one nursing home in Germany were dismissed as “tragic coincidence.”
The COVID-19 death toll in the small British enclave of Gibraltar numbered 16 before it launched its Pfizer vaccination campaign on Jan. 10 and then shot up to 53 deaths 10 days later and to 70 seven days after that. According to a Reuters report, the Gibraltar Health Authority declared there was “no evidence at all of any causal link” between 6 of the deaths that were investigated and Pfizer’s vaccine, despite the individuals having tested negative for COVID before vaccination, but positive “in the days immediately after.”
Hundreds more have died since.
Lots of information but Marths – the vaccine studies – which included tens of thousands of participants – were designed to assess just these questions. One study, for instance, followed 30,000 people. https://pubmed.ncbi.nlm.nih.gov/33378609/. They followed the vaccine recipients for months and did not find these kinds of problems.
Granted millions of people are now getting the vaccines and people with some conditions were not included in the original studies.
Studies are continuing to assess vaccine safety. A recent VAERS study after 13,794,904 vaccinations noted this “Safety monitoring for these vaccines has been the most intense and comprehensive in U.S. history” and came to this conclusion
https://pubmed.ncbi.nlm.nih.gov/33630816/
Another study using VAERS examining the incidence of anaphylaxis reactions in the Moderna vaccine concluded that:
https://onlinelibrary.wiley.com/doi/10.1111/ajt.16517
Given what we know of the many people with long COVID – I wouldn’t trust anyone who says something like this.
Adverse vaccination events will continue to be monitored.
I would be wary of anecdotal reports.
First, Cort, as always I am thankful for what you bring to the table. Lots of information and a platform to openly discuss issues that affect all of us.
I will say one thing about the vaccine trials, which I think are considered phase 1 and phase 2 trials? These trials were done almost exclusively on young, healthy people. In my opinion they could not have captured the true risk or efficacy for elderly or immuno-compromised. Having said that, the deal with Warp Speed was that using the general population for guinea pigs was granted with the caveat that there would be robust tracking. Most of us should be aware of the limitations of VAERS. And that is being generous. That is my opinion based on educating my self and on how I have witnessed doctors in my own life of having reactions and it is not reported anywhere.
I think you rightly capture the argument between each person weighing the risk of COVID and the risk from a vaccination. The percent risk of both is very low. If I was not medically compromised I would not be worried about COVID at all. Unfortunately this is the world we medically compromised people live in.
Without knowing what to believe, think or do regarding vaccines, this caught my eye :
“it is just plain stupid to get a Covid-19 vaccine based on the science. The disease holds almost no risk of complications for the vast majority of people that contract it with a survival rate of over 99%“
Excuse me?
My country is small & numbers are easy to follow since we’re 10mio people.
Per year the flu: 3000 deaths
Covid in 1 year: 20000 deaths
Not to mention the MAJOR GLOBAL group of longhaulers who’ve not been counted yet.
Unlike neighbouring countries we were doing great lately.
strict government measures: no xmas, masks, distance, curfew, 4 ppl together at distance outside max, only 1 close contact inside, no pubs or restaurants or other gathering events, no leisure traveling abroad, …
Harsh measures & everyone is mentally worn out lately, but they work.
Or worked.
Because the “british variant” finally caught up with us too.
70% of people tested carry that variant atm.
Much more contagious.
In no time we’re going up again.
3rd wave around the corner.
What they see in hospitals?
Mainly younger people in ICU.
It’s shifted. From the old to the younger “active population” (40-65 group esp).
And people are more ill than in the 1st & 2nd wave. From ‘not feeling well’ to being intubated & put in a coma a day later.
Infection rates in children are sky high. Not so in the previous waves.
So, not a big deal covid?
Please. Reality check!
People die or people survive ICU & have a recovery ahead of them beyond belief. Lungs & brains & veins are under attack. They ‘see’ the damage on scans.
Then there’s those who don’t need to get intubated. Who can stay at home. Ill to the bone. Some get over it pretty quickly (Dr Garner for instance) but a lot of them stay Ill.
Professional, social, physical, … life down the drain.
You can throw numbers around about vaccines (and yes I am pretty critical too about the info govt/who/… is feeding us on vaccines) but surely you can’t close your eyes and ears for the devastation of this pandemic?
Those who still think that a ‘younger healthy person’ won’t get so ill or can die? Think again.
Most ‘normally healthy’ people don’t know how well or not well their innate immune system works, and they have no idea about platelet counts or underlying heart conditions etc.
Until they get a nasty but very clever neurotrophic virus …
Your whole “life as you knew it” gone in a few days time.
But hey, “no serious complications”.
I can only hope for your sake or the sake of your family members & close friends, none of you will ever catch it and if you do you … hope you won the lottery at birth regarding your immune system & cardiovascular system & lungs etc to fight it off and go on with your life as you knew it.
There is NO good solution to get this pandemic under control.
Nothing but those damned vaccines will perhaps stop it in its tracks.
Perhaps within years they’ll find meds, who knows?
But right now? There is no alternative.
Don’t take a vaccine & hope for the best.
Take a vaccine & hope for the best too.
Or self-isolate for the next 10 years or so (which is already reality for housebound chronically Ill people but not for healthy people & it takes a mentally very strong person to live like that).
Those are the options.
Everyone decides for themselves.
Wow, it seems to me that the decision to get vaccinated or not is not nearly as cut and dried as each side of the issue would have us believe. Statistics seem to be way to easy to manipulate to prove one’s favorite viewpoint. I do know that death numbers on one side at least have been grossly inflated. For anyone willing to do a deep search, there are innumerable cases where a person died from totally unrelated causes yet were reported as a COVID-19 death. So good luck getting anywhere near correct numbers, even so the vast majority of the public believes that the percentage of people getting deathly ill and dying from COVID is very high when it is actually very, very low (even with all the false reports of deaths included). Every extra, earlier than necessary death is tragic and people should be taught how to improve their immunities to all diseases and overall health. Thanks to our media’s scare mongering and mostly successful attempts to smother any opposition positions and information, many people are extremely anxious. Sadly, I believe it will now use its great power to dismiss and under report the deaths related to the vaccines. Perhaps by simple methods such as only reporting publicly on the rare deathly allergic reactions rather than on, for instance, cardiovascular events caused by the body’s reaction to the vaccines.
Getting back to the many deaths falsely attributed to Covid-19, unfortunately, it was made profitable to report more COVID deaths. But beyond the financial incentives, I think there was also a great social and political pressure to exaggerate the numbers. Just to mention two examples, one was of someone who had actually had a positive COVID test, many months afterwards, they died in a totally-unrelated car accident and their death was added to the ‘COVID death toll’ – in another example, a family’s elderly parent was in the hospital dying of multiple causes (none of them even respiratory related). During their stay they were repeatedly tested for COVID. Every single test was negative. Yet on the death certificate, the family was enraged to read that their parent, who had never had COVID-19, had their death listed as COVID! In this case, they were able to get the death certificate corrected but in how many cases do the hospitals and senior-living facilities never get questioned about true cause of death?
All this data is useless.
Questionnaire studies are a complete waste of time.
The vaccine studies again meaningless these have not been conducted in a proper controlled manner meaning you have too many variables and proving causation is difficult takes a lot of time/effort plus money which still can result in no answer plus they don’t want to this is all about making money for the vaccine companies (they have done the same with flu ones you cant find any proper controlled studies done for me/cfs for that)
We don’t even know is this vaccine really has done anything yes numbers are dropping but again this can be for many reasons and one of the big ones would be that the vulnerable died out already the real world data showed this was not an issue for younger plus healthy people.
Now regarding ME/CFS people no one has an answer so it is up to each person if they want it or not we are not all the same different lifestyles, current health, age, weight etc so it doesn’t matter if 10 or 1000 random ME/CFS people state it has done this or that unless they do proper controlled human trials with proper groups we wont get any valid data (they are never going to do this this wasn’t even done for normal people)
Take the risk or not it is the same with everything in life.
Don’t forget to load up on vitamin D which has been kept very quiet throughout this whole thing (dont pay attention to RDA they are made up 3000iu a day is fine up to 25000iu for short period if feeling sick or few days before and after vaccine) also people should look at their lifestyles it will really does work diet is so important for everyone especially people are are sick I have helped many people with not just me/cfs change lifestyle/diet with big results (it does take time its not a quick fix)
The vaccine trials were effective enough that they were able to pick up a very, very, very small number of people reporting blood clots. If they’re precise enough to pick up that then they’re precise enough tp pick up many other potentially dangerous side effects.
The “its all about making money” canard is more than a little old. Because the drug companies knew they would be providing tens even hundreds of millions of people with their vaccines, they had a huge incentive to make as safe and effective vaccine as possible.
Dear Cort, there is one thing I am missing in the questionnaire: Whether people got vaccinated while being at their MECFS “baseline”, or while having a crash?
I am in the unfortunate situation of having crashed about 6 weeks ago, not yet recovered from the crash but due for Biontech vaccine tomorrow. I think I will stiill get the vaccine because due to the special circumstances where I live, I am afraid if I wait any longer I will not be guaranteed to receive an mrna-vaccine.
I am thinking about getting the Johnson & Johnson shot. Has anyone else received it and Do you think they have fixed their manufacturing issues?
Unfortunately, not all information sources are created equally. It is easy to find information on the internet that is less than accurate.
The death rate from COVID has been far greater than 4.91 out of 100,000 (0.00491%). If that were actually the case, then the death rate from the “regular” flu would be greater than that of COVID. The regular flu has a death rate of approx 1%, which would be 1000 deaths per 100,000. The survival rate for COVID is far from 99% and the assertion that there is almost no risk of complications for the vast majority of COVID patients couldn’t be further from the truth. The most recent US COVID relief bill wouldn’t have earmarked > 1 billion $ for long COVID research if the numbers were that small. In a NY times article that came out today, “ The misconceptions around long Covid are due in part to the mistaken belief that it is rare. But it’s not. Approximately 30 percent of Covid patients in a new but small study from the University of Washington reported that symptoms persisted months after their infection. If confirmed on a bigger scale, this suggests that long Covid could be one of the largest mass disabling events in modern history.”.
Not to mention the lasting heart and lung problems so many are contending with, including many who had bilateral lung transplants.
Not familiar with AFLDS, I looked up them up and first got a bunch of ads about AFLDS telemedicine services. Then there was this:
America’s Frontline Doctors’ Continue to Misinform on COVID
— Notorious physician group has now pivoted to inciting fear about vaccines
by Amanda D’Ambrosio, Staff Writer, MedPage Today
January 5, 2021
As a healthcare professional myself, I don’t buy the conspiracy theories. I trust the world’s leading virologists. I trust the science. Its because of good, solid scientific research that the DNA of the corona virus was identified so quickly and the advances in using mRNA vaccines that safe and effective COVID vaccines be developed so quickly. The CDC has a good article on mRNA vaccines and how they work, dated March 4, 2021.
I plan on getting the vaccine – if I can ever get out of a viscous crash cycle…… I was advised by my CFS specialist to wait until I am feeling better. I think that is sound advice.
Sorry, I figured I supplied enough info for a basic search, which is how I found the articles. My bad. Here are the links:
https://www.medpagetoday.com/infectiousdisease/covid19/90536
https://www.cdc.gov/coronavirus/2019-ncov/vaccines/different-vaccines/mrna.html
Additionally, here is safety info from CDC:
https://www.cdc.gov/coronavirus/2019-ncov/vaccines/safety/safety-of-vaccines.html
If there was a large quantitative study on “safety and efficacy of exercise”, it would be deemed safe and effective by “science”. But, what applies quantitatively does not necessarily apply to individuals. Furthermore, the vaccine creates a response in your body, which is a form of exertion.
My life was ruined by the covid vaccine by people who simply argued that not getting it was “unscientific”. I can’t believe that you, as someone who is familiar presumably with the politics of ME/CFS, would act so willfully unaware of the politics of chronic illness and ME in public health discourse.
That being said, of course covid is also very dangerous for us. But it’s not a “one or the other” type of thing. I was never guaranteed to get covid with my level of isolation, and as we know, vaccination does not stop transmission.
I will never, ever, ever forgive the social coercion from other “leftists”.
WOW- Great write up. Where did you find a good CFS Dr to advise you? I live in Atlanta not far from the CDC. Means nothing. I have had Both Moderna vaccines and just had Booster. Have developed many more maladies-but because of my immune situation do not think it is the vaccines. But A CPAP machine that is made by Phillips and a filter in the machines are deteriorating and patients are inhaling them. These are causing severe health problems and no way can you get a new machine? Also on the CFIDS issue. Get on a healthy diet. I have survived this and for over 25 years-from keeping a healthy diet and keeping my weight normal. Thank you for sharing.
Where did you copy this article from? It is important for people considering the point you are making to be able to judge the source. Makes very concerning reading
A saying says: there are lies, damn lies and then there is statistics.
“a full mathematical analysis that among “those vaccinated and above 65, 0.2% died during the three-week period between doses, hence about 200 among 100,000 vaccinated.””
=> 0.2% of vaccinated above age 65, or 1 in 500, died during the three-week period between doses. Roughly said, if 1 in 500 died during 3 weeks, then half of them or 250 in 500 are expected to die in 250 * 3 weeks equals 750 weeks or a bit short of 15 years.
For people above age 65, in fact ranging from age 65 to 100+, an average expected remaining lifetime of 15 years isn’t bad at all. In fact, I would estimate it to be above average as those of age 90+ do weigh down on that average a lot, so the vaccinated people of merely age 65 can expect a lot more remaining lifetime.
For a university professor, he should know this basic math just as much as I do. Others will have pointed to him if he somehow was a university professor but lacked decent math and statistics skills. So it seems VERY likely he DELIBERATELY tries to ABUSE science to let it apear that a clear lie (based on the knowledge he has and works with) is proven beyond doubt.
““This is to be compared to the 4.91 dead among 100,000 dying from COVID-19 without vaccination,””
In France https://en.wikipedia.org/wiki/Demographics_of_France there live an estimated 67 399 000 people and the WHO https://covid19.who.int/region/euro/country/fr has reported 90657 deaths. That gives us 90657 / 67 399 000 = 0.001345 or 0.1345% amongst the total population, including the masses youngsters and the majority of people who didn’t had Covid yet (in a large part thanks to severe social distancing). In addition, most countries underreport confirmed cases compared to overdeath rates (the rates at which more people died last year compared to a normal year). I didn’t try and determine if that is the case in France too.
=> It is OK to be sceptical and critical about vaccines. For example the challenges for people with ME who get vaccinated are underreported IMO. But those people with the knowledge, skills and accademic credibility who chose to DELIBERATELY twist and torture data, science and statistics to spread lies that will very likely cost thousands of lives should be sanctioned according to the severity of their crime. In such, this scientist abusing his credentials is IMO not an inch better then the horrible PACE “researchers” who chose to KNOWINGLY manipulate the PACE research in order to further their own agenda.
Yes, the PACE study leaped to mind. Also very damaging was the report that vaccines can cause autism. That 12 person “study” was wrought with data manipulation and it has since been proven 1000x over that there is zero correlation (and it is important to remember overall that correlation does not equal causation). Polio is now making a comeback.
I downloaded the VAERS dataset on the 27th of Feb 2021 (through Wonder). There were a total of 981 deaths in that file at that time (RIP). I can provide the file – my search criteria can be found below.
By contrast, what data do you reference to claim that there were 1,095 deaths “Between Dec. 14, 2020 and Feb. 18, 2021”? That doesn’t fit. I am worried you a getting the wrong end of the stick.
Just eyeballing the data, although no less tragic, many records are for nursing home residents, many with active COVID-19. Additionally, many non residents with records were active COVID-19 cases. Quite a few records are made directly at the request of a relative. Some records appear to be made by the relatives – is that possible? From what I can tell, VAERS is an associative database at best. No attempt is made to deduce causality or correct for baseline levels of comorbidities (e.g. heart attacks feature frequently). There are greatly varying standards of data completeness and quality. To say I gained far greater insight from Cort’s survey results is a significant understatement.
“Dataset: The Vaccine Adverse Event Reporting System (VAERS)”
“Query Parameters:”
“Date Died: Jun., 2019 to Feb., 2021”
“Date of Onset: Jun., 2019 to Feb., 2021”
“Date Report Completed: Jun., 2019 to Feb., 2021”
“Date Report Received: Jun., 2019 to Feb., 2021”
“Date Vaccinated: Jun., 2019 to Feb., 2021”
“Event Category: Death”
“Vaccine Products: COVID19 VACCINE (COVID19)”
“VAERS ID: All”
“Group By: Vaccine Type; Vaccine Manufacturer; VAERS ID”
“Show Totals: False”
“Show Zero Values: Disabled”
“—”
“Help: See http://wonder.cdc.gov/wonder/help/vaers.html for more information.”
“—”
“Query Date: Feb 27, 2021 5:45:10 AM”
“—”
“Suggested Citation: Accessed at http://wonder.cdc.gov/vaers.html on Feb 27, 2021 5:45:10 AM”
“—“
To Elisa who stated “There is NO good solution to get this pandemic under control.
Nothing but those damned vaccines will perhaps stop it in its tracks. Perhaps within years they’ll find meds, who knows?
But right now? There is no alternative.”
This is simply not true. Ivermectin & Hydroxychloroquine have both been shown to work prophylactically to PREVENT Covid-19. Budesomide has also been shown effective at treating Covid-19. Please do not take my word or anyone else’s for that matter. Do your own research.
Also, I did post all the news links throughout my comment but they did not compute through. Therefore, I do not know how to post links here. That said, again, I suggest no one take my copies of research for fact. Do your own due diligence. I’m not one to comment – ever! – but I fear for the lives of all who unknowingly take these experimental (NOT FDA approved) gene therapy mRNA jabs without realizing that they are participating in the ongoing “vaccine” trials and if they suffer any injuries including death, they have no recourse with the manufacturers as they are NOT liable. Everyone should be given informed choice. Unfortunately, this is not happening.
Marths, you posted lies and junk in the guise of science. What you ‘cut and pasted’ here is Fake news by the antivax groups who literally move decimal points to make their story sound scary. The problem is telling lies about medical treatments that can prevent death or severe illness (the latter you failed to even mention) should be criminal. You actually will have stopped people who don’t know better from having a vaccine and they could end up having their lives ruined because of your fake reports.
That’s quite appalling behaviour Marths
There was no Reply function to respond directly to Brendan Rob, but his comment about Marth’s post here is inappropriately accusatory and disparaging, as it offered no proofs or facts against Marth’s statements, for which there is solid scientific literature, educated and experienced testimony by practitioners in the field, and factual proof on certain points that he could have found himself had he been inclined to search. To claim the vaccine and protocol literature, conflicting financial interests, FDA policy, drug research, and opinions of experts he disagrees with are “junk science” and “fake news” while offering no substantiation for his detractory claims is dishonest, and potentially dangerous in its own way.
Dr. Peter McCullough, practicing internist, cardiologist and Professor of Medicine at Texas A & M College of Medicine and not a so-called “anti-vaxer” is but one of a number of practitioners and researchers, for instance, who have articulated reasons for their concerns about the COVID vaccines in particular, or about recommending them for the general public of all ages rather than a targeted at-risk population, and who recognize that there are (also) safe and effective preventives and treatments in the early stages, in particular. To assert otherwise is uninformed and misleading.
Cort, would you run a poll asking if anyone who got the vaccine came down with the virus?
And thank you for this poll, it helped me to not worry about getting the vaccine.
Could you state your information sources, please. Provide links etz. Thank you!
It was so important to share this information and to give people an alternate view so that people can evaluate more fully, ESPECIALLY those of us who have had our very real health issues denigrated for years or decades. As one of those people I want to hear ALL points of view. for the most part, we did not. So thank you Marths. As I see after the fact, it was brave to present all of this information that I too had found on VAERS. I had downloaded much of this information myself and took pictures of the reports. Wish I could share. It was very clear (once you get to over 1,000 in a week) that we were looking at something not exactly ‘anecdotal’.
To say VAERS reports are invalid is silly, since the medical establishment, the FDA, and government have used these for a very long time and considered the information helpful and informative, even if not part of a double blind scientific study.
On 1-25-2021 the VAERS site was taken down for several days. Afterwards it was nearly non-navigable.
Freedom of information requests have now shown that much of this (especially the myocarditis risks) were known from the original trials, and not released. There is very little motivation, in my opinion, for people to warn others of severe dangers – and much more motivation to downplay by those who have invested in it monetarily and politically. Many doctors lost their licenses over challenging the establishment point of view, and have continued to speak out.
Social media sites have admitted to giving in to pressure to censor alternative information.
Cort, it might be the wording of the poll that produced the strange result of so many respondents not having CFS or FM: you said “have been diagnosed with”. A number of people have never seen either a CFS/FM specialist or a doc who believes in it. So you might be convinced you have it without having an official diagnosis.
Ah! Thanks for that. I will amend that.
Yes, Heather I agree. I went to fill in the poll – having had my first AstraZeneca vaccination last Wednesday – but then I saw that I would have to be diagnosed with ME/CFS. As you write, no one believes me, so I have no diagnosis.
One other thought I would have, is that the Bell criteria seems to be focused on physical issues and I have generally had more difficulty with mental activities (though I did go through a time when my legs were collapsing under me and I had general weakness).
So, I didn’t fill in the poll. For a couple of days after the vaccination, I was very tired and was dripping with sweat through a couple of nights. One week on and I seem to have returned to my normal.
Thank you for collecting stats on covid + vaccination in our community. I’m perhaps prematurely excited about this article and potential influence on me/cfs treatment:
“Some Long Covid Patients Feel Much Better After Getting the Vaccine” in today’s New York Times :
https://www.nytimes.com/2021/03/17/health/coronavirus-patients-and-vaccine-effects.html?action=click&module=Top%20Stories&pgtype=Homepage
I saw that article, too! Exciting! Just wish it would would work like that for us ME/CFS and FM sufferers….
Apparently we would have to be vaccinated against the virus which triggered our ME/CFS – not a workable scenario for us. Since vaccines boost the immune response, though, it could point to part of the immune system that could be boosted.
Actually I was just about to ask – are there known cases of people with CFS getting better after a vaccination (whether it’s for covid or something else).
I mean the general view is that vaccinations can worsen, or even trigger CFS, but just wondering…
Last Tuesday, 6 days ago, I had the Astra Zeneca injection. I’m far from well, have had ME since 1977. Many times I’ve thought I’ve now reached the end of the line.
I’ve had stiffness and sweating but from Thursday I’ve also had moments of feeling stronger. Has my immune system had a kick up the backside?
I’ve also remembered that at one point I read an article about a Swedish man with ME keeping himself and others going by injecting a vaccine. I can’t remember much more. Was he a doctor or pharmacist?
Does anyone else know?
Is anyone researching this?
Nobody know why yet, or even it is true. But one possibility is the covid vaccine somehow clearing the vascular inflammation and restoring BBB of the covid patients, either by removing the residual virus or hypersensitivity to the virus. If that is the case, it probably won’t be applicable to ME/CFS patients. It would be yet another case of recovery from CFS-like sickness with specific cause. (Possible BBB breach due to vascular inflammation in the case of long covid).
In my local group and also the ME Association (UK) website they mention a few people having temporary relief from symptoms.
I was one of them, it was a couple of days alongside flu like symptoms then into a relapse but it gave me hope that researchers can look more closely at the mechanism behind it. (I haven’t knowingly caught Covid and 2 antibody tests were negative for Covid in August & November so don’t think it was unknown long covid going away).
The flare up/relapse kicked in afterwards but knowing there is something to it.
Not sure if it means
.my body was fighting off something that wasn’t there so when had spike protein to deal with it gave it a rest, or
.it wasn’t fighting something and the spike protein put on high alert and immune response helped fight it off or
.if it’s the switch theory that gone into a hibernated state and briefly came out of it or
. I potentially had a shock like response and my body dumped a load of thyroxine & adrenaline to make me feel buzzed or
.none of the above!
The UK variant is reported to be 70% more contagious but there is no evidence that it is any more deadly or dangerous .
I respect a lot of your work but that is fear propaganda.
This just came out actually – https://www.medicalnewstoday.com/articles/covid-19-is-the-b-1-1-7-variant-more-lethal
I also ran a low grade fever for a couple days with the first Moderna vaccine. I had inflammation, redness, and a bit of swelling at the vaccination site.
“…if social distancing continues…”
Yeah, and I don’t trust people to continue NPI once mandates are lifted. I’m scheduled for the Moderna vaccine at my local Kaiser clinic on the 29th. I’ll bookmark this page and come back afterwards. Somehow, I’ve never associated my ME/CFS as being severe but that 30 rating describes my ability and activity level very well.
It does seem that the social distancing is diminishing big time. On other hand the vaccinations are really ramping up. It’s going to be an interesting month! Good luck with the vaccination.
It’s amazing what we consider ordinary. A 30 on the functional scale would probably be considered disastrous in any other disease. Studies indicate that ME/CFS is one of the most functionally disabling diseases there is.
Cort. Can I ask if you’ve had the vaccination or are you intending to have it?
As is mask wearing, unfortunately. Cases are already surging up again in a couple states after easing restrictions. We should learn from Europe’s current third wave. I hope we don’t go there, too. We are SO close! We must stay the course for just a little longer!
I am eagerly looking forward to getting the vaccine. I have stayed away from vaccinations like many people but do not have a history of reacting badly to them. I think I had to become vaccinated to something to attend college decades ago and it went fine.
I want to be able to get out without worrying about catching it and ending up in the hospital…That could still happening but the odds are very reduced.
I do recognize that I could still get sick from the coronavirus but I imagine the fact that the vaccine would boost my immune response to it would help there as well.
Hi Cort, is it possible to add a couple questions for the severely ill group poll?
•’Have you ever had worsening health effects from a previous non Covid vaccination like the flu shot?’
•’If is how long did the effects last?’
Maybe they had bad symptoms with a past flu vaccine but mild with the Covid shot.
That information would be really appreciated
I had a flu shot 5 years ago that seriously worsened my symptoms (from mild for 26 years) to very severe 5 years now.
People in my category I presume are also probably more worried about both the Covid virus and the vaccine. Stuck between a rock and a hard place
Sorry to hear about your experience Brandon but thanks for the idea. I just added the questions. Good luck with making your decision.
I have been bedbound for the last 7 years since the tdap vaccine, I’m just starting to improve. Previously before I had CFS by a couple years, the flu vaccine was 8 weeks of severe flu like symptoms. Though before that I had no issues with vaccines. I did develop antibodies to the tdap, so that part worked at least. My immune system tends to over respond to everything.
I’m scared of another severe relapse.
And I am only slightly recovered from the tdap flare. I’m scared of covid and dying from it, but, another 7 years in bed isn’t exactly living either. And lets face it I haven’t seen friends or family for most of the last 15 years, haven’t left the house, and I wear a mask frequently anyway so the pandemic lifestyle isn’t a change for me anyway.
I see Cort says he added that into the poll. But there’s no way to separate out those responders to how they also responded to the covid vaccine. (unless I missed something?)
https://m.youtube.com/watch?v=bAtg85QEKGk
This might be interesting listening for many. A vaccine developer sounding the clarion call that the vaccines are good in many ways BUT being deployed DURING an active pandemic is a seriously dangerous thing to do based on their purely prophylactic action.
I am in Australia so I am not in the same decision making dilemma as many, but this info is worth considering
Thanks for posting. I’ll try to watch this in its entirety.
Quote “There’s no evidence, on the other hand, that getting the vaccine is going to kill anyone, but you do run the risk of a relapse.”………… is this comment a joke ? Over 4,000 people have died . Countless others have had strokes , blood clots , Bell’s palsy etc. Has anyone on this site not seen the FM/a fibromyalgia blood test available now along with the study of over 7,000 people with fibromyalgia where not one has died from Covid due to fibromyalgia patients being deficient in the IL6 and IL8 cytokine and chemokines ? Therefore they don’t get the cytokine storm with Covid . I finally got an answer by a 98% effective fibromyalgia blood test and was positive for fibromyalgia. There is no way I’m taking that vaccine . My sister is a nurse at the health department and gives out 600-1000 vaccines a day and she won’t dare take it after what she has witnessed. A flu shot nearly killed me and set off my fibromyalgia CFS in 1987 and I was in the bed for a year. Here is a link to the fibromyalgia blood test and clinical trial https://www.journaljammr.com/index.php/JAMMR/article/download/30884/57829/
Thanks for posting this Linda. It’s most interesting and worrying and can only be taken seriously as its by someone who actually designs vaccines. So these new very specific antibodies from the vaccines will actually over ride our more varied natural antibodies and this is permanent! This in itself rings warning bells without the rest of the information. Worth taking the time to listen to this.
Massive thanks once again Cort. We face one of the most difficult decisions regarding whether or not to get vaccinated and your poll and discussion is the only place I have seen open discussion about the pros and cons, especially from the perspective of CFS sufferers. I applaud you and hope everyone who reads this has donated to your fundraising drive to enable you to keep doing what you are doing.
Thanks.. 🙂
I appreciate the numerical breakdown as well. I’m on the FB group for pwme & vacc, and I have difficulty with the format of their poll.
UK here. Wondering how to distinguish between a reaction and the effects of getting to a vaccination centre and queuing round the block?
Still better than Covid which is a horrible way to die.
And we’re told blood clots with Astra Xeneca occur less than normally in the general population.
So many factors… There will be adverse effects for some due to the effort required to get the vaccine. Some people would experience relapses anyway because relapses sometimes happen for no reason that we can tell.
I wasn’t sure about the cause of my mild reaction to the first Moderna shot, but after the second I was pummeled for several days, and there could be no doubt about the cause. It was just like the flu — like getting hit by a bus — or the worst disease downturn in years (before I’d learned to manage downturns effectively). I’d say I was back to my baseline within about five or six days.
With new studies/data constantly emerging, this follow up article is much appreciated by many of us who are wary of severe relapses. Greatly appreciate all the work that has gone into this. On first read, I feel even more inclined to take the vaccine. Thank you, Cort.
Lots of good comments from everyone. Lots of conflicting stuff coming through in the news except the really careful, health-oriented news sources (such as Public Radio) seem to document pretty well that the adverse effects immediately or shortly after having the vaccine are about what you would expect *without* the vaccine in the same population.
Since that is barely intelligible, I’ll rephrase: for example, the examples of fatal or near fatal occurrences of blood clots was *less* during the large vaccinated population getting Astra Z than would be expected in the general population *without* the vaccine.
Maybe I was just lucky that I didn’t have terrible side effects. I avoided anti-inflammatories before the shot but I did drink extra water and maybe that helped. Extra water usually seems to help most things.
On the other side of the question, I walked by too many temporary refrigerator truck morgues on Manhattan city streets last winter and spring (including the swanky neighborhood near Lenox Hill Hospital) not to be ready to put up with a whole lot of bad temporary side effects from any vaccine against Covid. Just stay near medical assistance if you have high risk of dangerous reactions, seems to be the best advice.
NOW we’re hearing (WNYC yesterday) that NONE of the vaccines might be effective against the new strains esp. in NYC. CDC doesn’t seem to have caught up yet on this, but they always seem to lag behind.
A friend of mine with multiple comorbidities is still waiting to get a vaccine — any vaccine will be good enough for him — against COVID. As he put it, with all the new strains emerging, we’re all probably going to end up getting multiple shots anyway.
I think he is probably right.
So the question is certainly worth weighing, but I hope almost everyone will get the protection offered by the vaccine. Not only is COVID a terrible way to die, but post COVID is the last thing anyone needs to add to ME/CFS.
I score 30 on the Bell score, so I didn’t fill out the questionnaire (since I’m not below 30).
I had the two Pfizer shots. Ready and willing for any new one they want us to take to stop this thing from continuing to kill people.
I’m with you, Carolyn Smith!
Whoops! My mistake Carolyn. Bad wording there (which has been fixed). Actually if you score 30 or below on the functional capacity scale we certainly want you in the poll.
I scored 40 on the functionality test with Fibro, CFS. I took the first Phyzer vaccine, but I had adverse reaction to it with flu like symptoms for 6 days straight like I been hit by a bus, except no fever, chest pain behind left breast off and on and by day 8 chest pain hurt intensely for 9 hrs straight, so ended up in emergency room.
I was referred to see a cardiologist as my EKG passed but, numbers changed some from previous few years back.
My Dr advised that I could not take the second vaccine due to reaction from first.
Thank you so much for the summary, Cort!
I’ve been following the poll and comments closely for when I get my chance, and I’m hoping to be able to convince my doctor that I get the Johnson and Johnson. I figure the longer I wait, the more choice I may have?
I’m in Canada and there doesn’t seem to be any priority group I fit into ( tho as someone mentioned above, I’m sure many peoples functional level, especially most seniors living in the community, are much higher than mine. I’m about a 3 or 4). They’ve also decided up here to separate the two shots (the mRNA ones for sure) up to 4 months apart so I see that actually good for me cuz I have time to recover in between. One shot would be so much easier to plan for though!
If I wasnt at some risk, I’d probably wait quite awhile before getting the vaccine, but I live with my sister who works in Long Term Care (they have an outbreak right now, but can I get my vax? No way. ?. Eyeroll ). My other sister works in a hospital and my parents are both younger seniors so it adds up I might as well get it. I don’t get flu shots or any others cuz I don’t ever get sick anyways. Which makes me wonder how the heck I’d respond to Covid OR the vaccines. Maybe nothing would happen? But who knows. Anyway, thanks again Cort. Your posts are always so helpful
Vaccines in Northern California, and especially in Alameda County have been so difficult to get. I’m 68 and only managed to get my 1st dose of Pfizer on March 1st. My housemate, who is 66 (and has no insurance!) and has several co-morbidities which make him especially susceptible to a severe infection, still has not been able to access a vaccine!
I couldn’t take your first vaccine poll because I hadn’t taken it yet. Now this blog date will pass and I don’t think many people go back and look at older blog comments. Maybe some go a week or two back to check comments, but mostly once they are past, it’s out of sight, out of mind.
I want to be in your poll, but the timing is off. I will get my second shot on the 29th. Not sure what to do about this… I’m not quite in the severe category–rather somewhere between moderate and severe…
My first shot gave me a sore arm for almost a week. I did feel sightly more energized for a couple of days though…
Just saw this article about how people with certain immune-compromised conditions (and possibly autoimmune conditions) may not mount good protection to Covid after their vaccination;
https://www.medpagetoday.com/infectiousdisease/vaccines/91631?xid=nl_popmed_2021-03-18&eun=g1240599d0r&utm_source=Sailthru&utm_medium=email&utm_campaign=PopMedicine_031821&utm_term=NL_Gen_Int_PopMedicine_Active
In the article there is a link that says that there is continuing research at Johns Hopkins and an opportunity to volunteer for a study.
Also saw a push/pull article (won’t post the link) discussion of why certain countries in Europe are suspending the AstraZeneca vaccine because of small numbers of people who develop atypical clotting. Seems as if the argument is about risk/benefit. They don’t know why this small group of patients develop this unusual symptom but think that those who will benefit with Covid protection far outweighs the few who develop the clotting problem. And then there are those who assert there is no direct connection…
The survey was valuable to collect, thank you.
Please re-analyse as 2 groups : (a) responders who look like your target; (b) the rest. Did I miss seeing any graphs? The way the results are presented were harder to understand & compare.
I would not expect official adverse event notifications to include all expected side-effects eg. a few days feeling worse than usual like the beginning of a cold but not the worst of it & not sick enough to call a doctor.
Subjective response from Pts are open to some different interpretation of mild, moderate & severe.
—-
The claims by marths does involve some misunderstandings (or is that word too big for you?). A few tips: coincidence does not equal causation; compare like with like; the experts are seeing the covid19/vax results & obviously interpret them differently to you.
In 1 instance you tried to compare the death rate from COVID19 including the young vs deaths by all (non-trauma) causes amongst the elderly who coincidentally had a SARS-CoV-2 vaccine. Marths may have compared the COVID19 death rate of a fraction of the population (short time, all ages) to the effects of vaccinating a larger group including more vulnerable Pts.
It takes time for a vaccine to trigger & build the immune response required to fight infection. So, Pt is still vulnerable to COVID19 in first # weeks until better protected. The vax is not instant 100% protection like a superman suit against bullets.
If you don’t agree with me/others then feel free to publish in an appropriate & respected journal with a peer review process. Or add more references when quoting from others. Check the RetractionWatch website to see the mistakes of others.
I’ll be happy to get any of the SARS-COV-2 vaccines after the usual precautions. I would keep up my Vit C&D + zinc levels with a healthy diet & supps if needed. I would continue following mask & social distancing guidelines for several more months (especially in places of high community transmission, waiting for more to get the vax). I’ll continue the hand washing & hygiene.
I am on the fence about the vaccines, but it does concern me that none of these vaccines are actually approved by the FDA.
This is from Pfizer’s website:
The Pfizer-BioNTech COVID-19 vaccine has not been approved or licensed by the U.S. Food and Drug Administration (FDA), but has been authorized for emergency use by FDA under an Emergency Use Authorization (EUA) to prevent Coronavirus Disease 2019 (COVID-19) for use in individuals 16 years of age and older. The emergency use of this product is only authorized for the duration of the declaration that circumstances exist justifying the authorization of emergency use of the medical product under Section 564(b)(1) of the FD&C Act unless the declaration is terminated or authorization revoked sooner.
Actually everyone taking the vaccines now is participating in a kind of Stage III clinical trial.
Vaccinations in Florida have been a mess. Non-residents have been able to somehow get their shots here taking them away from residents. We only just got Johnson and Johnson, and now they are out of them and the powers that be decided to turn more of the J&J away (for now or forever, not sure) Well, my doc told me to hold out for the J&J….due to my issues. appears I won’t be getting any vaccinations any time soon.
I at seventy eight will not be getting the second Moderna vaccine Tuesday 3/23.
They say flu like symptoms are not unexpected but a double flu is too much and at close to thirty days seemly worse every day, unable to do anything. Must get better, or else.
Dr. Fouchy said the goal is no more deaths and fewer symptoms. (Vaccine?)
I noticed that you wrote Cort, that only 11 people responded in relation to the effects of the second shot of the AstraZeneca vaccine. Here in Ireland there is a 12 week gap between the first and second shot, so I won’t be called for my second shot until June 2021, if/when they lift the current suspension on AstraZeneca’s use.
I just read those previously infected with covid-19 show far worse symptoms to the first vaccine. That may be my case. Big mistake.
Cort, has anybody reported worsening of their CFS after the vaccination? I’d be most interested in that rather than general side effects shared with the healthy population. Headache or fatigue lasting a couple of days falls into the general side effects category in my opinion. PEM-like struggle lasting longer than that on the other hand is probably CFS-specific. And a permanent worsening of CFS or relapse definitely is.
Thank you so much for posting this information for us! I’m especially interested in knowing what happens long-term for those with multiple-chemical sensitivity, if there’s any way to find that. I’m the sort that can have liver numbers double over nothing more than a spore probiotic. 🙂 Also, is there any information on what happens with low cortisol? I’m currently in a flare from that, best I can tell, but haven’t been able to get a diagnosis yet. I’m strongly considering vaccination (it looks as though the virus is quite often worse than the vaccine). But I do still work (even though I often can’t sit up for it at the moment) and don’t want to lose the little bit of ability I have left if I can help it. I’m still quite a bit hesitant, I suppose, especially until I work these things out. Thanks again!
Experience of someone who pre vaccine was 30ish on Dr Bells Scale, after previous severe ME circa 10 but gradually improved to more moderate 25-30 on the scale with ebbs and flows over the years. Knowing vaccine would cause a flare up and potential relapse, but hoping it wouldn’t but that covid would likely be worse.
I know there will be many of us not wanting to undo advances we’ve made, my experience not likely comparable for someone severe-severe end.
I suspect a previous vaccine contributed to my severe ME but it was 4-6 weeks after so I selected no for the prior question as at the time it was only pain at the vaccine site (as far as I can remember it was over 10yrs ago). The covid vaccine produced the same pain in my arm (other vaccines haven’t done, nor did the first of the 2 boosters in my other arm). It was in think one of many things and in no way a clear link.
With the covid vaccine dose 1 astra zeneca I had a lot of unpleasant side effects, some severe but these became manageable after 3-4 days and even included extra energy for a day or so which was amazing.
The crash came after this and is currently at week 5, week 3-4 being worst so far comparable to 5-10 on Dr Bells Scale.
In conjunction it seems to have triggered reduced need for my thyroid medication (levothyroxine) so I was combatting symptoms of being over medicated, plus side effects from vaccine, plus relapse and not always easy to distinguish which is which.
At week 3-4 I was very scared I had gone back to severe ME (10 on Dr Bells Scale), altering my thyroid dose (further reduction) got me back to being more able to function so currently that seems to be more a flare than a relapse, I am circa 20 on the scale after 4.5 weeks so hasn’t as yet pushed me to my worst but hasn’t for back to pre vaccine level. I was very close to pushing myself over and pacing plus meds changed definitely helped this
For dose 2 I will be monitored, for dose 1 left straight a way to reduce stimulus. Within 10 mins I had slurred speech, confusion etc once home needed to be laid totally still very unwell and possibly had an accidental nap/lost consciousness without realising combined with a few hours later flashing lights in vision, inability to move really with extreme fatigue/pressure working against me maybe have been more that then reaction to the shot triggering migraine aura within headache I had attribute them to. In hindsight having a medical professional to hand would probably have been better than getting back home to rest, I plan to discuss with GP nearer dose 2 with regard to type, monitoring and any alterations to meds on the day.
The lasting confusion and palpations is what on day 4/5 when a clearer moment brain fog wise led me to link to overmedicated thyroid.
When I felt like I had a fever my temp was 34.7-35.1 it went up to 36 something a few hours later on so I wasn’t overly concerned.
Roughly it was:
1.Pain as if cramp/forced resistance spreading from site of injection that stopped as soon as hcw stopped touching my arm, some bleeding no more than after a blood test.
2. Felt okay, chatting in the car saying how smooth the process was. Then in under 10 minutes I struggled to get my sentences out etc, gave up, slurred speech felt rough and shut my eyes/stated quiet for rest of journey home (10 mins) and for straight into bed.
I was fully dressed under winter duvet but felt cold, cold hands/feets after some time (about an hour) I was able to interact but felt awful as if on the edge of coming down with something/headache in way, struggled to note down symptoms/send a SMS etc as arms/hands/brain not functioning properly plus fatigue.
This passed after 4 hours to the point I could get downstairs to make a snack.
3.I then had (I think) a brief migraine aura without headache that lasted maybe 40mins (flashing in vision in one side, jaw pain on the other, exhaustion, bobble head feeling, pressure pushing against me so have to be laid down)
Then felt okay again, even managed to go downstairs and hold a conversation and had extra energy quite surprised now well I felt.
4. Around dinner time the fatigue and immune response was kicking in, muscle cramps more noticeable, feeling warmer/light sweating as if mild fever, rested up, electrolytes etc but by 11pm it was like bad flu joints painful when tried to move, unable to sleep due to the pain.
Next day as if getting over something nothing too terrible. Day 3 tired but wired extra energy, even went for a walk but still felt like mild immune response was amazing as couple think clearly too at times apart from the confusion/memory aspect. Struggled to sleep as tired but wired.
Day 4….the payback started
Day 7 reduced levothyroxine after speaking with GP, confusion much better
Palpations and lightheadedness improved a bit.
Day 14 blood test to check nothing else going on, I felt better after the blood test (usually they make me feel tired). No concerns when results came back.
Day 21 crash starting to get worse back to 10 on scale (started at 30)
Day 25 palpations & breathlessness worse, constantly being pushed over, ordered arm band HR monitor to pace.
Day 27 when saw how eratic my HR was and higher than usual resting I chose to reduce levothyroxine further.
Felt human again when halfed my already reduced dose.
Day 32 (today) more like 20 on scale, I think getting in quickly with the pacing made a difference, that said I don’t have a lot of choice when it’s eat Vs keep hr under 100 but I am being mindful of it as much easier to push myself over than pre vaccine and it helped me to make the choice to abandon a few things/rest in between dressing etc (all things I needed to do in the past but no so much recent years).
I don’t regret having the vaccine, I’m hesitant having dose 2, I surprised myself at having the vaccine as erred on avoidance of vaccines due to risk of relapse ie I’ve not have a flu vaccine and wouldn’t have most vaccines until risk made it a better decisions for me especially not one with unknown long term side effects or side effects in people with similar health conditions.
It’s a very personal decision don’t let anyone influence you other wise.
I hope my experience helps people hear real world experiences to come to what is best for them.
I would say don’t just assume all your side effects are vaccine related/ME flare up and revert back to pacing/adding extra rests in if this is something you did in the past but stopped.
I don’t want to put anyone off and would say my reaction wasn’t exactly unexpected but I hadn’t really accepted how bad it might and hoped I’d just get the usual side effects and maybe have a couple of weeks of reduced energy.
There was also the amazing but where I got to feel myself again and thought how amazing it would be if that lasted, I hope the same happens for dose 2 even if short lived it’s good to have that back briefly and gives me hope of a cure/treatment options especially as some long covid improvement after vaccine, maybe there will be a long CMV vaccine equivalent one day (this we think is when I first got ME as first time my mum remembers me having prolonged post viral fatigue 25 years ago)
Dose 2. (after a lot of extra approvals to be sure everyone responsible/accountable at vaccine centre happy the benefits outweighed risks due to my response to dose 1 and age as recommendations had recently changed)
Didn’t feel it, no immediate response as I had after dose 1 (which makes me think likely first one did end up in a blood vessel). I went for the other arm this time as a precautions.
Following day all I could do was sleep but aside from fatigue only mild flu like symptoms with minor rise in temperature, additional body aches and feeling dehydrated.
Arm a little tender when touched for maybe a week.
36h later and felt similar to prior to dose 1.
About 10 days later and I’ve been a bit more slowed down but there are other reasons more likely than the vaccine. Certainly doesn’t feel like a crash or relapse.
I could not have imagined how different the two reactions were.
I had no symptoms of overmedicated thyroid medication this time as had lower level learning from first time.
I am not sure what, if any, the cutoff date is for your survey of Jan. 28th–is it still open?. I’m at day 10 of the J & J shot. No immediate reaction on day of shot other than exhilaration at getting through the process, but the fatigue which set in the next day (with some dizziness and headache) won’t go away. I’m used to sleeping 7 to 10 hours pre-injection and now am at 15-16 hours. I’m going to review with my naturopath an upped dose of cortef, to see if that ends these doldrums. I’ve had immune and fatigue issues of mild to moderate degree for years, with recent indicators of MCAS. I’ve had a history of 2 bad pneumonia shot reactions (flu-ish for a week each time). I’m glad you are doing this survey effort.
I apologize if it was presented inaccurately but I believethat was the beginning date of the survey and it is still open :). Glad the J & J shot went well. We could use more data on that shot. 🙂
I’m 71 & have been chemically sensitive since I was 41 after 6 months of exposures working with a lab using Kodak photo chemicals. I got the J&J shot & had a bad reaction for only 30 minutes where breathing was labored & I was shakey & couldn’t walk by myself. Then I was basically fine after that 30 minutes but tired the rest of the day. I have had anaphalactic shock 2x & 1 seizure when going thru chemotherapy in 2012. Vitamin C infusions helped me get thru all that. I was scared to get vaccinated as also in 2007 I had a tetnus shot that had my muscles & bones in pain for 6 months BUT 2 in my family work (speech therapist & physical therapist) with the covid patients & have to teach them how to swallow or walk again & see the ones dying of covid after getting it just going to a grocery store. So with my poor immune system & age & heart & lung issues I know I would die if I got covid so thank God for the J&J vaccine which will give me help if I ever do get covid. Also my husband had no problems with his 2 Moderna shots except a day of fatigue & some chills for about an hour. Neither of us would want to infect the other if we got covid so of course we got the vaccines to protect ourselves & each other.
I am a patient from KDM, with ME, fibromyalgia and a boreliosis. When to my 3 months routine check, and he was “positive” about Covid and his patient. Following, what he saw, ME patient have a very low cellular immunity, quasi none, so we will be “saved” by our disease. No immunity= no battle ground : that’s what I understand. And he recommend to do the vaccine just to, not infect others. I have no medical knowledge, just been ill for more then 10 years, and bed bounded nearly all day long.
Someone brought to my attention that a group of Covid long haulers seemed to improve from the vaccine and asked me if that was the same for ME/CFS. I thought no, but today someone in a Facebook ME/CFS group did report so (Pfizer). As it is not accounted for in the polls that people may also feel better, I thought I bring it to your attention.
https://www.wired.co.uk/article/covid-19-long-haulers-vaccine
Thanks Anne! I have heard from someone else as well. HR will have a blog on this.
Does anyone have information on whether or not high risk pregnant people with ME/CFS should be vaccinating or wait? Or what their symptoms are after vaccine?
My understanding is that pregnant women are strongly discouraged from being vaccinated because of the possibility of side effects. If you want to be a guinea pig however, and live in America, then the CDC is interested in tracking you: https://www.cdc.gov/coronavirus/2019-ncov/vaccines/recommendations/pregnancy.html
For myself (CFS) I see the vaccine as akin to playing Russian Roulette. It’s pretty much guaranteed to increase fatigue levels, and that’s the best case outcome. Worst case is fatal blood clotting etc. There’s also the unknown long term effects. Given the low risk of actually catching the disease the vaccine is not something I want to have anything to do with. That being said nobody I know is actually interested in being vaccinated. Nobody is anti-vax, it’s simply that nobody sees this vaccine as safe or necessary. Perhaps if I were living in a plague zone it’d be different, but I’m not so it isn’t.
Please reread the results of the side effects poll. Some people are having a lot of trouble but most are experiencing only temporary increases in fatigue, headaches, etc.
The brutal truth is that unless 70-80% of the population gets vaccinated the coronavirus is going to continue to spread and worse yet mutate. It’s mutating far faster and in more deadly ways that was expected. The British variant is 60% more likely to cause death. I understand that people with ME/CFS/FM are concerned about being vaccinated but I sincerely hope that every healthy individual decides to. These personal choices potentially have really negative consequences for everyone if an even more deadly form of the virus shows up.
Thanks for this great info, Cort! I was wondering based on you looking at all the data in order to make your own decision, did you find that one of the vaccines seemed more tolerated than the others by those of us with CFS?
Thanks!
The Pfizer and Moderna vaccines stand out for me. Astra-Zeneca is causing more symptoms but they weren’t long lasting for most. Given a choice I would do Pfizer/Moderna. If AZ was the only choice possible I personally would take that.
Not sure about J&J.
The vaers data is a shambles, anyone can submit to it, me, you, a thinktank with a political motive, anyone. I note ” Huntingtons disease” as a side effect, a purely genetic disorder.
Thank you so much for the polls, Cort! These are the informations we need in this difficult situaiton. It really makes a difference to know them or not. We shared them with our small support group (50 members). In addition, a german translation of what we consider to be the most important part will appear in the members’ newspaper of our support group (fatigatio) with a reference to healthrising. org. I hope that many german people with ME/CFS join the poll.
Dear Jutta, Im also from Germany. Are you aware of a poll similar to this one in German? Or, at least, do you know if there is an online forum to exchange experiences with the vaccines here in Germany?
Hallo Jutta, if you like to have a look, my comments below on “managing the risk of crashing from vaccination environment” refer to a German vaccination center and include a link to a Scottish study which helped me get a group 2 priority certificate (I’ve heard about abandoning priorities by June 7 though, but don’t know more about this). I agree Cort’s doing a great job!! If you submit it to Fatigatio’s newsletter, maybe it would be good to mention participation in the poll is voluntary not random selection.
My husband and me, had the Pfizer 3 days ago. He (healthy), got fever, feels something going on in his body. Myself (severe ill, bed bound with ME) no fever, nothing going on in my body(!). (beside the daily pain, burning and tingling etc).
It’s been 2 weeks since my 2nd Moderna shot. Side effects from the 1st one were almost nonexistent. 2nd shot had a fever of 101 and felt like I had the flu for 36 hrs.
As soon as the side effects wore off I felt better than I have in a loooong time. More energy, stamina, and sense of well-being- relatively speaking of course. The real proof came when I had to pack and get ready for a 3 month out of state trip with my husband for his job. Then I rode in the car for 2 days to get there. Normally this would cause a very severe crash and render me bedbound for at least a week or two. I’m exhausted for sure, but overall I’m I’m still feeling the positive effect the shots had. Just hope it keeps up.
You just never know. Maybe your illness started as a result of another coronavirus infection? In any case – I hope it continues to work
Thanks Cort. My ME started with EBV 35 yrs ago.
This is interesting as I had contacted the researcher at Yale prior to this article to mention what happened to me. Ive been seeing more reports of people with ME/CFS and other autoimmune diseases feeling better after the vax. Reddit’s autoimmunity community has reported instances as well.
“ Yale hopes to enroll 100 people with long COVID in its study to understand these phenomena and see if the relief will last. Researchers also say the findings could help in other diseases that may be triggered by a virus, such as chronic fatigue syndrome.”
https://www.msn.com/en-us/news/us/s…ients-report-vaccines-are-helping/ar-BB1fOtfF
How about delayed response to the 1st vax? I had it 8 days ago..I had a small immune response.. low grade chills that last a couple seconds..but lots of heavy sleepiness and some stomach upset. however 48 hours post I got a sore throat and 8 days post still have sore throat along with pretty good joint pain.. hurts to use hands and feet. ..even jaw feels sore. and the heavy sleepiness is back
I would strongly suggest thinking strongly about whether you want this vacc or not. I had the Moderna and am severely worse and cannot get over it. I believe that I had Covid also as my wife and son did and was nowhere near this bad. I was functioning, doing well, walking a bit and working full time. Since the Vacc, mostly in bed, feeling worse than I have in years. I worked so hard to get to a functional level, even working full time, but still not able to exercise other than mild walking. Now, I seem to be at a level I have not seen and all of that may be gone. I hope I will still recover, but I would not say that this is a no brainer decision. I thought that too. I thought it was my duty to get it and of course everybody says that you should. We just do not have enough information on this vaccine yet on people like us. Most people who are not doing well are not doing the polls so I think this is skewed. This could be the most devastating decision I have made since coming down with this dreaded illness. For most people, you should get the vaccine, but I believe it is a big risk for us. I know, it is a risk either way.
Sorry to hear that John.
I hope that you get better soon!
John how are you doing now?!
Dear John, may I ask how you feel by now? Have you improved?
I am sorry to hear this, I hope you will get better!
Where I live, if it is known that the person had Covid, in the mrna vaccination leaflet I was given it recommended to wait at least 6 months after Covid infection before getting the shot. I speculate whether a strong reaction could be related to Covid antibodies already being present, similar to stronger reaction after 2nd shot? There was also this thread https://threadreaderapp.com/thread/1395844621033525250.html mentioning vaccine reactions with LongCovid.
By now, Covid19 antibody tests are available. –> Could it possibly be a precaution to do antibody testing before vaccination to check whether one has Covid antibodies already?
About the numbers being skewed, I had actually been thinking that the opposite effect might also be in play, i.e. that people who are fine after vaccination are less likely to make an effort to go online and report this, while those who experience side effects (without being too severe to do so) may have more reason to search the web to compare experiences and complete the survey.
John, sure hope you are doing better! I wanted to share that I am a 50 on the scale with FM. I had 1st Pfizer Vax on 5/12/21 and I am still ill. I have been ill every day except for 3 days out of those 29 days and I am due to get 2nd shot on Wednesday of this week. Not sure yet if I am, just not sure. I have had like half a flu since 5/13 with rotating worse fatigue and pain than usual, feeling flushed/warm but no fever, gastro/intestinal symptoms and nausea, brain fog, headaches. Today I have a terrible sore throat and aches, etc. It’s like a moderate flu that I cannot shake.
Thank you Cort for the immense amount of time you spend in educating us on ME/CFS and Fibromyalgia. I am finally going to get the Pfizer vaccine in a couple days. I am 67 years old with ME, fibromyalgia and IgA immune deficiency. So I waited for some time to see the results of your poll and hoping to see further research. My question for you since your results were posted just over a month ago: have you heard anything from the close to 10% that had the Pfizer or Moderna vaccine and a month out were still suffering from worsened Me/CFS symptoms following the vaccine? Another words has anyone let you know that they did eventually get back to baseline in the last month? Thank you so much for your time.
Hi Patricia,
I’m afraid that I haven’t heard and I don’t know about them.
Thanks for your hard work, Cort. Your efforts to keep us informed is greatly appreciated.
One thing you didn’t ask. Did you delay the 2nd shot? I delayed the shot by 2 weeks due to effects from 1st shot and listening to CNN doctors . As a result I had no symptoms with the 2nd shot except a sore arm.
I had only minor, 1-2 day symptoms from the vaccine. The fear of getting the vaccine was much worse than the minor side effects I had. The day after the second dose, I had an unexpected benefit- I woke with high energy and clear sinuses- for the day I felt like I did before getting sick. This makes me optimistic that perhaps the BCG vaccine or other future targeted injection could help me.
I have to mention I am scared of taking the vaccine. I had covid was very bad first week but second week just headaches at night. When I had the flu it lasted longer than this like three weeks. So if the vaccine gives me more pain. Is it worth all the side effects.
Comment on managing the risk of crashing from vaccination environment
I’ve had my first Pfizer/Biontech shot 2 days ago and will wait a couple more days before I complete the survey (so far the known side effects like a bit of pain in the arm and definitely a tiredness which felt different from MECFS though).
But while we are all quite focussed on the uncertainty whether the vaccine may or may not affect us physically, I would like to point to another factor which is the amount of exertion that results from the local setting of the vaccination process, and which we can fortunately try to manage to some extent: I actually had quite a wonderful experience in that regard which I would like to share:
In the European country where I live, I was scheduled for vaccination in a big vaccination centre. I am normally moderate MECFS but still had not recovered from an energy crash 7 weeks ago. Though I do not have formal disability status, I do have doctor’s reports from the health pensions process that mention “reduced mobility/difficulties with walking” which happens during energy crashes. Showing this document, I was allowed to drive to the disability parking lot directly in front of the entrance.
After registration at the centre’s entrance, I felt daunted by the sight of a long and hardly moving queue leading up to the next step of the process, knowing I’d probably crash from standing in the first queue alone. I then told a member of staff about having reduced mobility with difficulty walking and standing for a long time, hoping they’d maybe allow me to walk a shortcut. What happened then was that, before I knew it, they’d put me in a wheelchair, and wheeled me past every queue and every waiting area, the maximum amount I’d ever have to wait was about 5 seconds! Never having been in a wheelchair before, this felt strange, but looking back it was the right thing to accept this help, because even with taking the disability shortcuts, I was exhausted from the process and amount of noise in the centre alone. At the end of the process, I asked to lie down for a while and was allowed to do so in the paramedic area.
The amount of support I met there was quite unexpected and wonderful, but it made me realise that patients may be at risk of crashing from the environment of the vaccination.
I realise not everyone may be able to control the circumstances of vaccination and some may be too sick to organise this, but for those who can my recommendations would be to try and:
Get the shot in an environment with few waiting times (e.g. medical practice). For the absolutely immobile, there might also be a possibility of getting a home vaccination (though in that case I assume you’d want to check that medical support in case of complications will still be in place in a home environment). Get a document from your doctor that shows your difficulties with mobility. Check whether the vaccination location offers support to people with reduced mobility such as special parking. Pack earplugs. Don’t be afraid to ask staff for help, mentioning difficulty walking and standing, sitting upright for a longer time due to exhaustion, being overwhelmed with ambient noise etc.! I hope you will meet friendly people too.
There were snags in the centre’s processes, like I noticed a disabled single man waiting in his car assuming some staff would automatically come and pick him up to make the 25m from car to entrance, which does not happen, but as soon as I adressed staff 2 minutes later someone came with a wheelchair to pick him up.
Probably somehow I also was lucky I did not get my shot at the centre earlier in the pandemic, because by this time there were few cars in the disability parking space and no shortage of wheelchairs, while staff recounted that at the beginning of vaccination with highest priority groups only, the big reduced mobility parking lot was full to the brim. P.S. my GP gave me a “group 2 – high priority” vaccination certificate after showing her the MeAction Scotland impact report of Covid on MECFS patients https://www.actionforme.org.uk/uploads/images/2021/04/Initial-findings-impact-of-Covid-19-on-ME-April2021.pdf
Came back to update after 2nd dose of AZ. Absolutely nothing like the first dose which I had an extreme uncommon reaction to, plus usual strong flu like, short lived improvement then a prolonged relapse/crash (8 weeks+).
2nd dose the following day I crashed with mild flu like symptoms and extreme fatigue (slept most of day and night) then 36h later was back to similar level as prior to dose 1.
For the 2nd dose I had reduced my thyroid medication so didn’t experience overmedicated/hyperthyroid symptoms that were making my reaction worse to the first dose. This helped a lot.
Not sure why fever is not listed as a side-effect. Mine went to 102 the second day, gone by the third. Had the Moderna.
I had the Moderna vaccine. I have had CFS/ME since 1985. Had it mostly in remission for close to 15 years.
Vaccine caused SEVERE inflammation of old injuries / surgeries and gave me EXTREME pain (over 10 on a 1-10 scale) and 10-12 drenching sweats per day that were as severe as if I were standing in a waterfall. My spouse took me to the ER twice – nothing they did gave me any relief for longer than about an hour, and they told me not to come back.
I was finally able to see my primary doc who put me on low dose morphine, flexeril, and Norco. It took a week but that combo did finally stop the pain. She has had me stay on the meds for my second vaccine so as to not have a repeat because I have emphysema too.
It’s been 2 months now since the second vaccine, and I am finally starting to feel better. I am still on the morphine, and still having the drenching sweats but only a few every few days.
This has been a rough time. Because it takes me about 3 times longer to recover from any illness than a healthy person, we figure I can hope to be back to my pre-vaccine self by the end of July, God willing.
Thank you for this, it’s been heartening to read what folks have said, and to know someone is tracking info about and for those of us living with CFS/ME, fibro, and more. Much appreciated!
Thank you, Cort, for compiling this website. It helps a lot 🙂 !
Have you got any information about the influence of the *interval* between the two shots? There seem to be more antibodies after a longer interval, but what about side effects?
Could you maybe include this question in your questionaire? Here in Germany the standard interval for Pfizer used to be 4 weeks, now it’s 6 weeks. In England it was 12 weeks, and was reduced to 8 weeks to take better care of the delta variant (only 32 % protection after the first shot).
Adjusting the interval might be a way for us to minimize the side effects while still getting protection.
All the best!
Rika
Great idea, Rivka. I hadn’t thought of that.
I wonder if will do a poll for those of us who have had side effects longer than one month? For example, for those still not well after 30 days, did it take people 6 weeks to recover? 2 months? 4 months? I’d like to see a poll for those of us having long-term ill effects from the vaccine. It’s been 2 months for me so far, with no improvements. I need some hope. 🙂
I’m 9 weeks out from my 2nd Moderna vaccine and am in agony with pain and weakness in my arms – worse in my right (I had both shots in this arm). The new level of disability this has caused is really disturbing. Still waiting on a diagnosis, but suspect some form of myopathy. I am honestly surprised that none of our M.E. experts warned of this possibility. After all, we are already dealing with myalgia. Polymyalgia rheumatica has not been ruled out. I Googled it, and many vaccines can trigger this.
Is anyone else experiencing this? It seems to be worsening rather than resolving.
Hi Cort,
Given that it’s been a while, and we have a number of new Covid variants since the last report, could we please have an update on the results of this poll? Only please don’t report, or just report separately, the results for people who don’t have MECFS of Fibromyalgia? I’m sure you can understand that the MECFS and Fibro community turns to this blog for answers, and our immune systems are quite unique, therefore we don’t need the 40% of the data from those without MECFS or Fibro diluting and skewing the results.
Also, is there a poll just for people who have been diagnosed with Covid itself and how their recovery went? Or didn’t?
Many thanks for the work that you do.
Cort, I would love to see an update on this poll’s overall results too. I’ve been tracking it for months, weighing the arguments and results while waiting to get over a severe infection in a non-healing leg wound before getting vaccinated. But now the Delta variant is here, and I’m feeling like a sitting duck now. I have to make a decision. Could we have a new update on the poll? A lot’s changed since March when this was last updated. Would immensely appreciate it!
I would love to see an updated version of the poll where we can see
1. How many who got a relapse longer than 4 weeks.
2. How many had a relapse or got ME from a prior V, and how did these vaccines effect them?
Me and many others who fell ill with ME from earlier V´s are still searching for more answers to be able to make a decision.
Me too! Feeling like a duck who can’t even sit here LOL. I’m not sure WHAT to do! I’d put myself in the severe catagory of suffering and I’m hypersensitive to most medications, but I know there are still many that are worse off than me. If I feel any worse than I already do I’m afraid the thin thread of hope I’m hanging on to with unravel and I’ll fall into a pit I’ll never be able to out of. On the other hand if I get the Delta variant and in Nashville TN area it’s a hot spot now even in children for infections, I’ll surely die. No doubt about it and I really don’t want to “go out” of this life suffering even more. I’m trying to just accept THIS illness and all it’s taken from me in life as is. I’m afraid to take a vaccine and I’m afraid not to take one!
AND all my typos. Sigh. I never used to miss words and when I reread what I wrote I grieve even that ability; to write.
Cort, could you please let us know if you are planning on doing an updated poll now that so many more people have been vaccinated. It might well be quite a different result to the original poll. Many thanks.
Dear Cort, I want to add to Paul Dunstans post right above which I support.
Aa big compliment from Germany for this great blog and your incredible effort. However, I would like to ask again what conclusions are to be drawn from the poll after more months. As a moderately to moderately affected CFS patient, I have not been vaccinated so far, because the incidence of corona here in northern Germany has always been low and so far many protective measures have been in place, so I wanted to “hold out” until more is known about the reactions to the vaccines. With your great blog and poll since January you have created exactly this possibility. What I wonder though – as I’m sure many others do – , what about an update after a few months? What about the 20%, e.g. at Pfizer, who had severe side effects for more than 30 days after the second shot? Are these side effects gone after 3 or 6 months or are they still there ? If 20% of the vaccinated had not recovered after a long time, that would be an incredibly high number! Then I would have a 1:5 risk of a clear aggravation of my CFS if I vaccinate myself. To recommend the current vaccination – before vaccines with less side effects or with lower doses per shot are available – would then hardly be possible, unless one is almost sure to get Corona? In Germany, only about 10% of the population has had Corona so far. With dark figure maybe 20%. The vaccination would then be the higher risk… Maybe I have simply overlooked other information here, sorry? Or do you or the community think that the actual risk of side effects in ME/CFS patients is fortunately much lower than the poll suggests – because rather those patients filled out the poll who actually had problems?
Your great work is inspiring, but in a way I miss a conclusion several months after the publication of the poll in the light of its results, which partly seem more dramatic than once hoped for. Thanks for a reaction and keep up the great work, Eduard
We’ll do another vaccine poll. Don’t forget the perhaps 20% of ME/CFS patients who appear to have gotten better after the vaccine shot or the people the 40% or so who were still sick after getting a COVID-19 infection after 4 months.
I’ll try and fold all that in.
Thank you, Cort! Much appreciated.
Vitamin B12 was a gamechanger for me!
I have taken 1000 microgram injections 2-3 times a week for about 10 years (more only before/after extreme exertion, otherwise it just ends up in the toilet).
After the first Pfizer shot I took 1000 micrograms per day, and it wasn’t too bad but my energy level stayed much lower than normal even after 6 weeks. Then after some overexertion I was even worse (worse than ever) for 10 days, until I started taking up to 9000 micrograms of Vitamin B12 per day. This made the difference between bedbound 24/7 (in a darkened room with earplugs in) and being able to take care of my mini household (= back to normal). After about a week I could gradually reduce the dose to 2000-3000 ug/d.
I had my second shot a week ago (e.g. after 3 months – plus up to 8000 ug/d Vit. B12) and am already nearly back to normal.
Hurray!
Rika, what kind of clinic or practitioner helped you find out about this remedy for CFS? My young friend’s symptoms fit your description, he has medical insurance and, unlike me 🙁 , can pay for medical, naturopathic, herbalist appointments. I would love to look into it for him. Thank you.
Got the J&J. Overall: experienced a moderate increase in energy for two weeks. Currently back to baseline.
Hi, can we please have an update!?!!!
would be much appreciated
Thanks
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. Period volume was less this month, so it 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!
@JR: I, too, developed shortness of breath, especially while climbing stairs, after the vaccines. Although I have mild asthma and am overweight, this DEFINITELY started only after the vaccines. I had an echocardiogram and chest X-ray which were normal, so there was no other cause found. The shortness of breath took several months to dissipate, and I did start asthma meds and lose weight, but it ultimately has diminished and I would say I was back to baseline 4-5 months following the second vaccine. I had the Moderna vaccine. I have not yet been boosted because of the side effects I had from the vaccine. Among other issues, brain fog and increased fatigue & pain persist 8 months after the second vaccine.
and then : it comes back. I have 2 shots and it was all fine, mild side effects no problem.
This was 2021 Summer, but then in October I started to get iller then before with a courious begin it starts ever with pain in the Muscle whos was vaccinated , but it was autum so no problem , but this July I ask my docs if a third vaccination is ok because I have this illnes and (from my 16 hours sleep in the middle, I sleep 18 hours and more every day or cant stand up) so my docs say it will be to much and before sience cant say that this dont comes from the vaccination I had to stop ;( we think its like on all the effect after a few days but we have from fibromyalgia to cfs all very weard problems with our imunsystem and what one takes tne next da< rhe other need a lot of month (hope my Imun system comes down it was not the first time in 45 years with this two budys
I filled this out for my mom, realizing it is so much later than the original poll and early vaccine questions (initial plus booster). I want to add a comment here since I was only able to choose “Other” and not list the side effects my mom had and likely others had and may not have identified with the vaccine until now when more study results are coming out. So people can choose in future circumstances. Even though after the initial Moderna vaccine and after each booster my mom told me she would not get any more. Yet, she is social by nature, and because she lives in an assisted living facility, she would be completely quarantined (even without out the illness) and socially isolated if she refused the vaccines, not even able to eat in the dining room for 2 years. Therefore, she got each shot…in spite of severe reactions every time. With the last final horrifying result, she is done – never again.
1) Initial Moderna vaccine: A TIA (mini stroke). It took her about a month to recover officially, but increased fatigue has been a continual issue.
2) Moderna Booster: The capillaries in her eye began to bleed. She was diagnosed with macular degeneration, but 3 months later she was told she “no longer had” macular degeneration. Since it does not go away, it is likely that it was related to the mini-clots and bleeding issues now reveled with the MRNA vaccines.
3) Since the age of 40 post breast cancer and radiation she has had lymphodema in one arm. Moderna Booster:Her lymphodema arm became swollen and she got a rash. She was told it was an infection and put on antibiotics. The rash took a month to clear but the addition swelling in that arm did not go down, but slowly increase. Without lymphnodes in that underarm and chest it is hard to clear infections and in general detoxify.
3) Moderna Booster: A woulnd in her skin over her chest on the left side where the infection and lymphdema was showed up. FIst leaked, then began to fester. Biopsies were done for skin cancer but none there. It began to seep blood, then infection grew. It has now bled and been infected, and actually bore a long tube or hole down to her breast bone. and again put on antibiotics. It has been going on for 6 months. Her doctors have not named this or given a cause, but she will have surgery to have the skin and tissue removed, the bone evaluated and addressed if needed. There will be both a thoracic surgeon and a plastic surgeon. A skin graft is likely needed as the skin is so thin and has has so much infection and the strange hole/tube.
In full disclosure, I want to be clear that not once did her doctor say this was related to the vaccine, and he is the one to continue to encourage and administer them. But each side effect listed here occurred less than 2 weeks after her injections.
My own doctor had advised me (I also have ME/CFS/FMS/migraines) to NOT get the vaccine, and specifically listed risk of TIA, strokes, bleeds, and nerve damage.
Current studies (more often funded and published in Asia and Northern Europe) are seeing blood and cardiac issues, not just the myocarditis but never before seen ‘micro-clots’ in conjunction with bleeding issues. Freedom of information inquiries are revealing more of this now.
I want to make it clear my mom has never had cardiac issues in the past. MANY other issues (as you all understand, I am sure), but not cardiac. Thank you for this opportunity to share. It is obviously too late for this pandemic, but we may have future similar situations. I wish for people to see a fuller picture, especially for things not on the checklist which was created long before some of these more sever side effects were known.
I’d like to say that my first and only vaccine triggered MCAS/EDS, which has ruined what little life I had before with severe ME.
I had multiple effects from the vaccine which the poll did not allow multiple answers to express. Pfizer made me bedridden for over 5 months with acute flu like symptoms til I got covid19. Then I became much more well for 5days as the novel .infection resolved. This bizarre wellness only lasted for about 3weeks when I discovered my asthma had become highly sensitised requiring hospitalisation which had never happened before. During this time I believe my immune system was overwhelmed as my mast cell activation went into remission but then left me with random swollen lymph nodes, extreme fatigue, bone.pain, etc by the 7month post initial dose mark.
This continued til around d the year mark where I also developed pain and was eventually changed diagnosis fro CFS to fibromyalgia. 2 years later I am still unable to work because of this.