PLEASE NOTE: THE INFORMATION IN THIS POST I RELEVANT ONLY TO THOSE WITH ME/CFS, A UNIQUE AND COMPLEX IMMUNE SYSTEM DISORDER.
Probably like most of you, I have been thinking about the COVID-19 vaccine ever since the first ones were available. I'm still not yet sure what I will do when it becomes available to me, but now, finally, I think I have the data I need to make a good decision for myself.
Upfront, I want to emphasize that I am a proponent of vaccines, and my kids got all of their required vaccines when they were young. However, ME/CFS is an immune disorder, and that complicates things for us. This post contains all the information you should need to make an informed decision for yourself, too.
ME/CFS Immune Dysfunction
Plenty of studies have confirmed that the immune systems of people with ME/CFS are dysfunctional; they don't work the same way that they do in healthy people. It's a complicated dysfunction, though, that doesn't fit neatly into the usual categories of autoimmune (where the entire immune system is over-active) or immune deficient (where the entire immune system is under-active). In the case of most people with ME/CFS, parts of our immune systems are over-active, while other parts are under-active. You can read more about this in my post Immune System Abnormalities in ME/CFS.
How Vaccines Work and How That Affects ME/CFS
Vaccines are designed to stimulate the immune system; that's how they work. They trick your immune system into thinking it's been exposed to an infectious agent so that your body will produce antibodies to fight it off. Then, later, when you are exposed to the infection the vaccine is meant to prevent, you already have the antibodies against it. This doesn't always mean you won't get any symptoms when you're exposed, just that your immune system will have a head start in fighting it so that your symptoms (if any) will be much milder and not last as long. As an example, when they started vaccinating kids against chicken pox, some kids still had mild symptoms (perhaps a mild fever and a few small pox for a few days) when exposed to the virus later.
Since people with ME/CFS have immune systems which are already partly over-stimulated, this means that with any vaccine, there is a chance that the extra stimulation to our immune system will result in a crash or worsened ME/CFS symptoms. It's not the vaccine's fault; it's doing exactly what it was designed to do. But for those of us with dysfunctional immune systems, the result may not be exactly the same as for healthy people.
Further complicating matters is the fact that there are different kinds of vaccines, including some that use live virus (rarely used now) and some that use inactivated virus (see that link for more types and more info). The COVID-19 vaccines from Pfizer and Moderna (the two currently available in the U.S.) are a new type, a mRNA, or messenger RNA, vaccine. The mRNA is injected into our bloodstream and gives instructions to our cells to create harmless pieces of "spike protein," a protein found on the surface of the virus that causes COVID-19 (SARS-CoV2). That triggers our immune systems to begin making antibodies, which will protect us against future infections. You can read more about this type of vaccine and how it works on the CDC website. The Astra Zeneca vaccine from Oxford (currently the most common one used in the U.K.) and the upcoming Johnson & Johnson vaccine are adenovirus-based (an adenovirus is one type that causes the common cold). That means it uses the virus--considered harmless to most people but a potential viral trigger for those with ME/CFS--to get the vaccine into your cells. This article explains how those two types of vaccines work and this article compares all of the COVID-19 vaccines currently available (and coming up). Finally, it is important to note that experts currently estimate that the COVID-19 vaccine will provide protection for only six months to a year. This means that, like the flu shot, people will need a new one each year.
I highly recommend reading ME/CFS and FM Experts on Whether to Take the Coronavirus Vaccine by Cort Johnson of Health Rising, who has a great talent for doing all the research and making it easy for patients to understand. His article includes lots of information, plus opinions from several of our top ME/CFS experts.
So, no one really knows for sure how people with ME/CFS will react to the vaccine, since it is entirely different (but not unknown - that CDC link includes past research and experience). However, anything that stimulates our immune system is likely to cause an ME/CFS crash: the question is how bad and for how long?
Our own experiences (mine with ME/CFS for 19 years, my older son for 17 years, and my younger son for 10 years, now recovered) mirror the scientific findings that I describe in that post on immune abnormalities. We all have evidence of over-responding to allergens (both environmental and food allergens), over-responding to viruses, and under-responding to bacterial infections. This means that in 17/19 years, my son and I have very rarely caught a cold or flu because our immune systems fight off viruses, though just being exposed to a simple cold virus can cause a virally-triggered crash for us. This means that we don't develop symptoms of the virus, like congestion or cough, but our "normal" ME/CFS symptoms (which are immune symptoms) get worse. You can read more about this in the post, The October Slide: ME/CFS and Infectious Triggers. On the other hand, if my son or I gets even a tiny bit of congestion, even from allergies, we develop bacterial bronchitis and need antibiotics--because our immune systems are not fighting off bacteria the way they should be.
As for vaccines, since my sons first became ill with ME/CFS, we and their doctors all agreed they should stick to only the most necessary vaccines (they were 8 and 10 by then so had all of their young childhood vaccines), just to avoid that extra jolt to already-overactive immune systems. So, they did not get the HPV vaccines, but they did both get the meningitis vaccine before college, since that is a highly contagious infection that is often fatal. Neither of them had any adverse reaction or crash after the meningitis vaccine.
My older son and I (my younger son was well by then) normally do not get flu vaccines, but we did get it the year of the H1N1 scare. He did fine, with minimal crash after, but I crashed (worsened) severely for a full month after. That was my first and last flu shot! In almost 20 years, my son got the flu once, and I've never caught it, and there are now inexpensive and readily available antivirals for flu, so that seemed like the right choice for us.
BUT ... again, the COVID-19 vaccine is a different type than any of these. Still, I spent the past 11 months in a lengthy crash, lying on the couch, and am just starting to feel better, so I am not eager to make a leap of faith. Luckily, there is one last puzzle piece now available ...
Experiences of Other Patients with ME/CFS
With so many unknowns, what I've been waiting for is data: what happens when people with ME/CFS get the COVID-19 vaccine?
Not surprisingly, none of the pre-approval studies of any of the vaccines used people with ME/CFS! They mostly choose healthy people without pre-existing conditions for those studies. So, I was very curious as to how real people with the ME/CFS immune dysfunction would react. For several months, I couldn't find this information anywhere, but there are now two excellent sources for real ME/CFS patient information:
- Action for ME, a UK patient organization, has set up a website for UK patients to record their experiences with the COVID-19 vaccine. There are only three responses so far, but hopefully that will grow over time.
- Facebook Group - there is a new Facebook group, ME/CFS and the COVID Vaccines, specifically set up to relay information and allow group members to share their experiences and ask questions. This is just what I needed! The group already has 3000 members, and there are new posts every day from people with ME/CFS who got their vaccine and report on their response. So far, from some brief perusals, it seems that most are having similar reactions as the healthy population--a few days of flu-like symptoms and then back to baseline. I am watching carefully to see what the longer-term response is: whether there are any people who have a longer-term crash or more long-term worsening.
- Health Rising Poll - the Health Rising website, a reliable source of information for ME/CFS patients, has also set up a poll to collect data on responses to various COVID-19 vaccines. You can enter your own response here or click the link at the bottom of the poll to view the results so far. This poll gives me great optimism, as the large majority of patients who have responded so far said their post-vaccine symptoms lasted less than a week. I can live with that!
For me, I am going to keep up with the Facebook group and the poll and keep reading about others' experiences. The vaccine is not even close to being available to me yet, so I have time. My husband is 66 years old and has waited about 5 weeks now on the state's wait list for 65-and-up, with no word (though he lucked out and got one elsewhere this week, entirely by chance), so I think it will be some time before I'm eligible. There is definitely too much demand and not enough supply yet.
However, learning more and especially reading about others' experiences is making me far more optimistic that I will be able to get the COVID-19 vaccine without any long-term worsening.