Friday, May 14, 2021

COVID Vaccine Experience of ME/CFS Patients


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 Online Groups

There are groups you can find in various places online where ME/CFS patients discuss their experiences. Many of them have already been vaccinated and have shared their experience in the group. Others still waiting ask questions. I can't include names or links, but you can try searching for them.  Facebook in particular has clamped down on vaccine discussions, so the group I am in is in danger of being taken down. If you post a question or your experience in a Facebook group, use v. or vax or shot or jab rather than "vaccine" and single letter designations for the type (M or P or J or AZ) to help keep FB from removing or limiting these groups.

My impressions after being in my 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 linkIf 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:

Pfizer: 12%

Moderna: 10%

AstraZeneca: 14%

Johnson & Johnson: 14%

See the poll itself for the most up-to-date data. 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.

Our Own Experiences:

UPDATE 8/3/21:

Since I first wrote this post, my son and I are now both fully vaccinated and are both back to our normal baselines. We both reacted pretty much the same, which is typical for us; our immune dysfunction has always been similar to each other. We both got two doses of the Moderna vaccine.

After the first, we both had almost no reaction, just a mildly sore arm for the first few days, and perhaps some worsened fatigue a week or so after (though that is hard to ascertain whether it was the shot or not).

After the second, I had a bit more response, as is typical in the general population. I felt fine for the first 24 hours, then had 24 hours of feeling really bad--pain all over, flu-like, exhaustion--and then maybe a week of slightly worsened fatigue. I thought that was it, though for the next few weeks, I felt "normal" most of the time with one or two days a week when I was crashed (just really tired) for no apparent reason. Given the timing, that could have been the vaccine still, as my immune system adjusted.

My son started out just like me after his second shot: 24 hours of feeling fine, then 24 hours of flu-like symptoms. At that point, just by chance, he had an appointment with his Lyme specialist and got the IV's he always gets there: Myer's cocktail (a standard mix of vitamins and minerals in saline) plus a bag of glutathione. That brought him back to feeling great! On the way to the office, he was wiped out and slept in the back seat, and by the time we left, he felt great and had plenty of energy. And that was it for his post-shot reaction. This is likely because glutathione helps to normalize the immune system, as I discuss in my third vaccine post, Prep for ME/CFS Patients Getting COVID Vaccines.

UPDATE 1/28/22:

With the benefit of hindsight, I now look back at the rest of 2021 and think that it is possible that some vaccine effects continued through until  late November (about five months in total). It's hard to say for me because I was already in a relapse that began March 2020 that I was still trying to recover from. I did feel quite good in May 2021, before my vaccines, so it is possible that the worsening the rest of the year was entirely due to the vaccines ... or that my relapse wasn't really over yet in May and I just had a few good weeks. It's really impossible to tell! In any case, these "effects" were simply more fatigue and less stamina than usual. By fall, I was feeling almost back to my baseline, except that about two days each week, I would completely crash and need to rest all day. I did continue to improve (and try new treatments) over that post-vaccine period. So, when I finally started to feel back to my "normal" baseline at the end of November, was that because the effects of the vaccines wore off or because my relapse finally ended? My best guess is a combination of the two.

You can read more about my own experiences (I got COVID in January 2022) at the link.

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.

[My 3rd post in this series about COVID vaccines is Prep for ME/CFS Patients Getting COVID Vaccines, which is also applicable for those with fibro, Lyme disease, EDS, and immune disorders. It features tips and advice on how to prepare ahead of your vaccine, to give your system the best possible chance of a positive outcome.]

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