+100%-

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.

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

 

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

The 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.

THE ME/CFS and FM CORONAVIRUS VACCINATION SIDE EFFECTS POLL

Coronavirus vaccines

Tell us how your coronavirus vaccination went and find out how other people with ME/CFS and/or FM fared with their coronavirus vaccination in Health Rising’s Coronavirus Vaccine Side Effects Poll.

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First shot – Sixty percent reported that their reaction to the first Pfizer shot was mild or non-existent, 29% reported it was moderate, and 11% reported it was severe (total participants: n=553). Seventy percent reported they were over any side effects within a week, 13% reported it took up to two weeks, 16% reported that they were still recovering 2 weeks later.

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

Decision- to get the vaccine or not?

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.

ME/CFS and FM Experts on Whether to Take the Coronavirus Vaccine – Plus The Vaccine Polls

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.

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THE ME/CFS and FM CORONAVIRUS VACCINATION SIDE EFFECTS POLL

Coronavirus vaccines

Tell us how your coronavirus vaccination went and find out how other people with ME/CFS and/or FM fared with their coronavirus vaccination in Health Rising’s Coronavirus Vaccine Side Effects Poll.

Don't Miss Another Blog!

Like this blog?

Make sure you don’t miss another  one by registering for our free ME/CFS and Fibromyalgia blogs here..

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