[PLEASE NOTE: THIS POST IS ONLY FOR THOSE WITH ME/CFS, AS IT REFERENCES THE SPECIFIC IMMUNE DYSFUNCTION OF THIS DISEASE. IT IS NOT RELEVANT TO THE GENERAL POPULATION.]
Because a primary characteristic of ME/CFS is a dysfunctional immune system, many of us have been concerned about the impacts of getting the COVID vaccine. You can read more about the specific immune dysfunction of ME/CFS, the way vaccines (and specifically the COVID vaccines) work, and more in my earlier post, ME/CFS and the COVID-19 Vaccines.
I wrote that back in February. I was concerned for myself because I began a severe relapse of my ME/CFS in March 2020 and was still not yet back to my normal baseline, plus some recent lab tests had shown significant immune dysfunction. In that earlier post, I explain what factors I was considering and some resources for you, too.
Now, it's three months later. I have not yet gotten my COVID vaccine, but two new developments have occurred: just in the past two weeks, I finally seem to have returned to my "normal" baseline after a 14+ month relapse and my ME/CFS specialist ran extensive additional immune testing and gave me the OK to go ahead and get the vaccine. The other factor is that I have been closely following the experience of other patients with ME/CFS, and that's what I want to share with you today.
ME/CFS and the COVID Vaccines Facebook Group
I mentioned this group in my earlier post. You can find it here on Facebook. The group now has over 6000 members, and many of them have already been vaccinated and have shared their experience in the group. You can click the Join button to join the group (it's only for those with ME/CFS) and peruse the posts in the Discussion area. There is also a search function (the magnifying glass icon) if you are looking for something specific. if you have already been vaccinated, please share your experiences in the group (use v. or vax or shot or jab rather than "vaccine" when posting in the group as Facebook is clamping down on some vaccine discussions).
My impressions after being in this group for several months are that there is a wide range of experience with the vaccines, from those who had a "normal" reaction, like any healthy person would, with some symptoms that subside within days, to those who have severely relapsed to those who are actually better than they were before the vaccine! Yes, that's right - some small percentage of ME/CFS (and long-COVID) patients improve after the vaccine. Personally, I find this anecdotal information helpful but sometimes a bit scary. As you might expect, those who have a mild response usually post once or twice, but those who go into a severe ME/CFS relapse post-vaccine that lasts for a long time usually post multiple updates (which are much appreciated). These stories of long-term relapse are frightening for me, though I greatly appreciate the people willing to share their experiences, and they do get some emotional support through the group.
The Coronavirus Vaccine Side Effects Poll for ME/CFS and Fibromyalgia
Personally, being a very analytical person, I like data! The Health Rising website (a reliable source of information for those with ME/CFS and fibro) started a comprehensive poll back in January, which now contains responses from about 4000 patients! This is enough data to make it statistically significant.
You can find the poll at this link. If you have finished your vaccine and have either returned to your normal baseline or or at least 1 month past your last shot, please fill out their simple survey so you can help other patients. For everyone else, you can see the current results of the poll (constantly updated), if you scroll to the bottom of that post and click on "View Results."
There is a lot of information to see there, including severity of illness, side effects post-vaccine (for each of the available vaccines), and how long until the patient returned to whatever their "normal" baseline is.
I have been focused on one piece of data for each vaccine: the % of patients who are still relapsed (not back to normal baseline) after 30 days. For me personally, that's the key piece of information. I expect to "crash" after the vaccine, possibly even for 2-3 weeks, and I can deal with that. My biggest concern all along, given my recent 14-month relapse and my immune problems, is that the vaccine might trigger another long-lasting relapse.
As of today, here are the % of patients still relapsed more than 30 days after their last dose of vaccine:
Johnson & Johnson: 14%
Again, that's the piece of information I was most interested in, but you can see the full poll results at the link (scroll down and click on "View Results.").
Health Rising has added an additional poll: a poll for those who improved after their COVID vaccine (within this post that also includes advice from experts). Again, you can respond to the poll if you improved after your vaccine or View the Results.
Also, this Health Rising post from March provides a summary of the poll results at that point, pluys an additional poll for those with severe ME/CFS who have had the COVID vaccine (scroll down to get to the poll).
There is also a UK-specific poll at the ME Association website. It's a more simplistic poll, with just a single question, but it shows 7% of respondents (of about 2000) still relapsed more than a week after their last shot.
Based on this information, my latest lab results, conversations with my doctor, and the end of my long relapse, I am going to get my vaccine next week, opting for the Moderna, as it has the lowest occurrence of long-term relapse. But, I am still pretty nervous about it. 10% still seems like a big chance to take after just enduring a 14-month-long relapse! Since my "normal" baseline is actually pretty good, with treatments, it feels like a big risk to me. Maybe I'll get lucky and be one of those who actually improves? I'll report back.
I hope this post provides YOU with the factual information you need to make your own vaccine decision.
Please share your vaccine experiences and/or your considerations in making the decision about the COVID vaccine in the Comments below.