The ME community has had a lot of questions about whether it is safe to get a COVID-19 vaccine.
ME/CFS experts from the Center for Complex Diseases, the Institute for Neuro-immune Medicine, the Bateman Horne Center and, in the UK, the ME Association have weighed in with their recommendations on this matter. Overall, clinicians are recommending that people with ME get a COVID-19 vaccine, but take precautions to offset adverse effects. The Bateman Horne Center recommends that people with ME/CFS wait a few months until the vaccines are broadly administered.
Center for Complex Diseases Recommendation: ME clinicians from the Center for Complex Diseases issued a letter discussing the safety of the COVID-19 mRNA vaccines made by Pfizer or Moderna and offer precautions with people with mast cell activation.
Institute for Neuro-immune Medicine Recommendation:
Dr. Nancy Klimas recommends taking supplements before and after the vaccine, and medicine to reduce mast cell activation.
Bateman Horne Center Recommendation: Dr. Bateman recommends people with ME/CFS wait a few months until the vaccines are broadly administered.
The ME Association (UK): Dr. Charles Shepherd concludes that “taking a risk of having an exacerbation of existing ME/CFS symptoms [from the vaccine] is a small price to pay for having a high degree of protection against a life threatening infection that we are all going to have to live with, just like flu, for the foreseeable future.” This applies equally to the Oxford AstraZeneca vaccine that is likely to be most widely available in the UK.
49 thoughts on “ME Experts recommendations for getting A Covid-19 vaccine”
Hi, I have just had my seventy eighth birthday and received the AstraZeneca vaccination last Friday. I’ve had ME for over fifty years , initially not too severe but then for ten years severely affected and bedridden, and now improved. I felt at my age the side effects and exacerbation of ME symptoms would hopefully be less risky than catching the Covid virus.
I had no reaction at the scene, but later a fever that lasted thirty six hours with heavy fatigue, headache and nausea. The first twelve hours were the worst for me with intense muscle pain throughout my body. My arm is still inflamed, swollen and painful and existing ME symptoms are worsening. I hope any relapse won’t be for too long. Btw i refused the flu jab each year until two years ago when I was very ill with shingles and my GP insisted I had it. I also had it this year along with the pneumonia jab and had no reaction to any of them apart from painful arms.
I’d be happy to take part in any survey, so if you would like my assistance in any way please contact me. Feel free to print this too. Best regards, Sandy
Hi Sandy, how are you feeling after a few months of having taken the vaccine? Hoping you are well and looking forward to hearing from you. Thank you.
sandy, happy 78th birthday. So nice to know that someone has had CFS/ME longer than I have. June 10th will be my 44th yr. as a SURVIVOR. Good thing that I didnt know @ the time that it would be LIFELONG/. Hope that you have recovered from y our vaccine. Sorry that it made you so sick. Still havent made my decision about getting vaccinated, Am doing research so do appreciate your post. Take care of yourself, and hang in there. If you want please keep in touch with me via e-mail. Diane
In 1988 an anti-tetanus injection plunged my mild to moderate ME in to very severe ME. I have not taken a vaccine since. Do you think I should take the Covid vaccine? Thank you very much.
I’m wondering the same thing… In the 90s before I got sick, the flu vaccine made me very very sick for 8 weeks. 6 years ago I got the whooping cough (which was bad), a few months later my doctor told me they were giving me something else and then handed me the tdap sheet. For much of the last 5 years I’ve been bed bound. Before that I had CFS but could do a few things on occasion. I also have EDS/MCAS/POTS.
Victoria, I highly recommend you see Dr. Andrew Neville, a naturopath specializing in CFS. He is the director of the Clymer Healing Center in PA that has focused on healing CFS patients for over 50 years. He knows what he’s doing! They do everything virtual.
I’m 77 & have had ME/CFS/FMS since childhood. Have tried to get help from my State in the US in order to get the COVID 19 vaccine.
My medical information was forwarded to VAMS/CDC & they sent me an e-mail to confirm my at risk status & to have my COVID 19 vaccination at my local hospital with 1/2 hour observation. My problem – there is no coordination between the State & an off site location.
Any recommendation?
It’s the last day of January and I am patiently waiting to see if it’s OK for my wife who has mild ME/CFS to get a COVID vaccination. I received my first shot a week ago.
When are we going to know if ME/CFS patients who have taken the vaccine are fairing well?
Hi I had my vaccine back beginning of December. I hadheadache and sore arm for a while but nothing more than that. My health has vastly improved as I have been learning all about breath work, energy points and the power positivity. My pain killers have reduced by more than half.
Hi, I have moderate ME/CFS, POTS and MCAS. I got my first shot three weeks ago, the Moderna. I’m fine. Felt bad for a couple of days, and the usual PEM after leaving the house.
She should get it. It’s not worth the risk catching the actual disease and getting long-Covid, or having her ME/CFS become severe or extremely severe.
There is a page on health rising that polls ME/CFS patients on their Covid vaccine side effects. You can read through it if you are really concerned.
https://www.healthrising.org/blog/2021/01/28/coronavirus-vaccine-effects-chronic-fatigue-syndrome-fibromyalgia/
I had two Pfizer’s in March and April with no negative effects except a sore arm. The positive effect has been overwhelming. My brain fog has reduced from San Francisco pea soup fog to early morning regular fog and I am out of bed perhaps six hours a day. How wonderful!
A few months, one said. You might want to join some M.E. patients and family FB groups to keep abreast of the information, as it comes out.
I was diagnosed with severe ME at 15. Upon asking whether I should get vaccines at that time, a doctor told me that vaccines can cause a serious relapse and I should only get vaccinated if absolutely necessary. I have read online pieces about people suffering after vaccines. In the UK we have mention of a vaccine passport in order to enable freedoms, I feel that I am being coerced into getting vaccinated so that I can live a normal life and yet, after years of struggle to get to a somewhat normal place in life, I may suffer a relapse because of the vaccine. A relapse will undo everything I have strived for. This is called “a small price to pay” in the above leaflet. I would suggest walking in the shoes of someone who has suffered greatly with ME, who has missed out on enough of life already because of it and then decide whether it’s a small price to pay.
Amen to that…this year is my 10th “anniversary” of contracting M.E. and half of that decade was spent bedridden and struggling to shower, or read a book, or just live a semi-normal life. That “small price” could very easily mean a setback lasting the rest of a life for one of us. I’m waiting to get the vaccines, but we may never get a definite answer of how safe it us for us; we’re eternally on our own with this illness it seems. Relapses can be triggered from such seemingly benign things that any degree of immune activation makes me nervous.
Yes I agree,,,,I’ve said same, after 30 years of ME I could not cope with any worsening of my my condition and that could take time to develop. People say having vaccine sort of ok, few symptoms etc for some days etc….but that not my concern…as I say mine is the longterm effect…and nobody can answer that. We can only decide for ourselves and mine is a NO to the vaccine at this present time. I was ill in early infancy following standard vaccines in the 1950’s. Good health and wise choices, to all. Susan.
Hi Ross, my situation is exactly the same as yours. I was 15 when I developed M. E and I am now 41. At 15 though I had the MMR jab after having a virus and it was pro Ed that my body couldn’t fight against the vaccine and this then developed into M. E. I was only able to start working full time 3 years ago and able to start living a pretty normal life and I am now petrified that if I have this jab my health will take a turn for the worst again and I will be back at square one. For me the thought of that is simply unbareable and it takes make me want to take this risk of contracting Covid (which I think I actually had last year). But if the vaccine passports come into play in a big way it also seems like an impossible situation to avoid. It’s so hard to know what to do for the best isn’t it.
Yes I’m not sure that when others say that a resurgence of ME/cfs symptoms (that I have literally been fighting years to somewhat tame) is a “small price to pay”. For myself I am torn because I know exactly how big a price I could pay if I have a resurgence of my severe ME/cfs symptoms. Personally I am doing everything I can to continue to improve even small amounts from where I have been. I am not sure I can handle another traumatic relapse right now.
Appreciate all the statements from other CFS / ME sufferers above. This really is a difficult issue. I was only recently diagnosed and have been experiencing slowly degrading symptoms for around 12 months – my current condition is mild-moderate. Unable to work and life is significantly changed. I had the 2021 flu vaccine about 2 months ago and it exacerbated symptoms for about 4 days – before ME any side effects would be very mild for 1-2 days. On discussion with my doctor re pros and cons I made the choice to get the Pfizer vaccine – first shot was 5 days ago. Within 24 hours my symptoms worsened, particularly headaches, fatigue, body pain and nerve pain. I’m hoping this is a short term thing this but don’t know yet. I’m still planning to go ahead with the 2nd shot in 2 weeks because it’s clear we’ll be living with Covid-19 and its variants from now on. I agree with my doctor that potential impacts of a serious Covid-19 infection would likely be disastrous – while the short-term impacts of the vaccine appear (so far) to be significant but tolerable – and hopefully not long lasting. I’ll see what happens in the next few days but at this stage I’m pushing ahead with the full vaccination.
I totally agree with you about feeling coerced into getting the vaccine Rosa – I’ve had ME from the age of 21, for the first two years mildly, until I had a flu jab in 2018. My ME became much worse, and it has taken up to now to feel I am making progress with feeling a bit better. I do not want to risk having another vaccination, but I am also worried about the limitations on our already limited lives when vaccination passports come into play.
Don’t do it, especially if you’re young. I have bad cfs and got a serious case of covid. I was put on Hydroxychloroquin, a z-pack and aggressive steroids and survived. Now I have lifelong immunity (they’re lying when they say it’s not lifelong; will be the first time in history that antibodies don’t last). The most important thing to have if you catch it is an inexpensive oxygen meter. They told me in the ER the danger is that oxygen levels decrease so slowly the patient doesn’t realize it’s gotten low until they’re out of breath and thats too late sometimes to be treated. Take zinc, vitamin D. If you catch it stay hydrated & eat even if not hungry & go to the ER if you feel worse. Waiting to be seen is another reason people had bad results.
I have ME and have had it for over 30 yrs. Mine I would say it varies from moderate to severe.
I am 58. I had the Astra Zenica vaccine and apart from falling asleep for 4 hours solid I have had no side affects, not even a sore arm. I will be due second any time now.
Well said. I couldn’t agree more. Medical exemptions should be allowed for. There should not be a society of have and have nots!
Exactly my thoughts Rosa. It’s unbelievable to me that people can even say those words to someone who has to struggle to live a normal life. They don’t understand that we live in a prison. Our bodies have become our prison and we are still in there trying to get out! I don’t know if I can ever accept that this is a life time struggle. I scream in my head! (And sometimes out loud, lol.) Good luck Rosa and God bless you and your life and family.
Based on the comments here, 3 CFS/ME people took the jab and are ok. My CFS in the past was not affected with any vaccine and I took almost all, live in the tropics now.
What worries me more is long covid that people are reporting, the question is if it protects from that scenario.
On the side note, I’m doing much better since the epidemics, it seems that exposure to regular viruses triggers my never vanishing symptoms, so mask, hand sanitizer and all are going to be me untill I am here.
How many ME patients have had a reactivation to CFS after having the Johnson & Johnson vaccination? And what was the duration. Thank You
I have moderate to severe ME with several comorbibities. A few years ago I had my first and last flu shot. 5 minutes later I stopped breathing. With covid on one side and dangerous reactions on the other, I’m terrified of which ever choice I make.
wow, that’s scary. I’m so sorry you had to go thru this, but kudos for surviving! it shows you’re tough, if with issues. I’ve had cfs for decades and, now a mild return or RA, which I had 23 yrs ago, but was without until this year. I’ve managed these pretty well with anti-viral herbs from master herbalists, energy medicine and other outside the box support. in my case, I know that the Epstein Barr virus and the cytomegalo virus (both are forms of herpes) are active in my body when symptoms are up. I’ve been advised to wait 3-6 mos. to get stronger, bring down my viral levels, and also, because more will be known, and possibly newer vaccines will come as the months pass. instead, I’ve been a hermit and very careful. I am encouraged to know-and this is really why I rsvp’d to you-that there are antibody treatments available now which, if taken at the outset of a covid infection, have been known to really reduce the effects of the infection. so, that’s another safety net for those of us concerned with the vaccine. too bad sensitive people like us can’t get a mini dose first to test it out. a trial dose.
Hi Linda,
Yes it’s a scary situation isn’t it and stress is the last thing we CF sufferers need! You mentioned antibody treatments….what are these and how do you access them? My CF has spiked in the last 6 months and it looks like we might be in for another outbreak here in Melbourne, Aust so there is a lot of pressure to get vaccinated. I am pretty terrified of how this might set me back even further.
All the very best to you x
Absolutely! We do not yet have enough research about the affects of the COVID-19 vaccines on ME and CFS. They are very new vaccines. Plain and simple.
Another doctor shares their thoughts
“Should people with ME/CFS, FM and Environmental Sensitivities get the COVID vaccine?” by Eleanor Stein MD (Mar 20, 2021)
https://www.eleanorsteinmd.ca/blog/covid-faqs
I have had ME for over 20 years but have been 80% better for the past 8 years.
I had the covid vaccine one month ago and 2 days later had a complete relapse of all the symptoms I had recovered from. I am currently bedridden and will definitely not be having the 2nd dose. I wish I could turn the clock back. There is absolutely no way I would have had had the vaccination
Hi Ann, how are you now?
Hi Anne, I’m so sorry to hear that. Hopefully whatever you did to help you improve 8 years ago will work again. I have found diet and meditation, avoiding stress where possible to be very helpful.
Thank you for posting your message, it has helped me make my decision not to have the vaccine. Very demoralizing as I live alone and having to self isolate to stay safe isn’t fun.
I really hope you pick up soon x
I am 71 years old and I have had ME for over fifty years, very difficult to get a diagnosis in early years. Finally in the 80’s Mayo clinic and Dr. Klimas recognized it as CFS. I have struggled with many relapses and flares off and on over the years, and learned on my own to manage them. My life has been severely compromised over the fifty years, and finally had to go on to disability in the 80’s. Today I function at about 50% capacity and have been for the last ten years. I am in mild flare right now due to moving to a new home. I am trying to wait for the Johnson and Johnson vaccine to minimize the side effects with only one shot, as other vaccines have put me into a flare. However, at present, I am not able to find a vaccination site here in my area of Florida that gives the J&J. Does anyone have any experience with the J& J vaccine. Yes, I agree with the blogger that we are pretty much on our own with little insight and support as to making our ME vaccine decisions. Thankful for this website, all of my fellow sufferers, and Dr. Klimas work.
My mother, a 72 year old who has dealt with severe ME/CFS for the past 25 years, received her first shot of the Pfizer vaccine about 9 days ago. Since that time she has been largely bedridden and also beset with nausea. She’s already decided she will not be getting her second shot.
I should note that my mom does have another condition going on (chronic kidney disease), but it certainly seems this reaction stems from the vaccine.
Another datapoint as your community susses through these difficult decisions.
After having COVID in Dec., 2020, I stay tired All the time and my joint pain is worse. Shoul d I take the vaccine?
I was diagnosed with ME/CFS in 2014. However I believe it started when I was 22. I was bedridden sick sleeping for 2 weeks when I heard about some mysterious sleeping disease in New York. I made it to the doctor somehow to be be tested for Epstein Barr. I tested positive but never had mononucleosis.
I’d forgotten about CFS and maybe didn’t believe it anyway like everyone else, right? I tried to live over the next several decades by self medicating. I’ve since recovered from substance abuse disorder, being left with trying to live a “paced” ME/CFS life.
In any case, I’m permanently disabled and ME/CFS has been by far the most debilitating of my many medical issues.
I just had my first Moderna COVID vaccine yesterday. I didn’t really feel any side effects, except my arm started getting a teeny bit sore late last night. I had a bad (worse than normal; not migraine) headache that woke me about 4am. I took some medicine and was able to doze off. About 45 minutes later I just woke up and felt awake – without having taken any of my morning supplements or stimulant medication. It’s been decades since I felt any kind of awake on my own like this.
Do you think it’s possible there’s hope for us trying to live a “paced” life with ME/CFS?
Anyone else have positive experience after vaccines? Even temporarily or after second dose like some COVID long-haulers report?
I had my first shot for Pzizer on Monday. I too woke up this morning (now Thursday) alert and not tired! And much earlier than I usually do! My whole family kept asking me why I was up so early and looking at me weird because this never happens. I am hoping this continues and isn’t just a one time occurrence.
Long story. I have had ME/CFS for about five years. My ME/CFS was likely triggered by Epstein Barr as well. I learned how to cope via pacing, however I believe I contracted COVID in November of 2020, and my ME/CFS flared up terribly after that. I got my first jab in April and I haven’t had a fatigue spell since then. It’s crazy because I am feeling a level of alert I haven’t felt in five years.
I had my first shot for Pzizer on Monday. I too woke up this morning (now Thursday) alert and not tired! And much earlier than I usually do! My whole family kept asking me why I was up so early and looking at me weird because this never happens. I am hoping this continues and isn’t just a one time occurrence.
I’ve had CFS/ME for 30 years and don’t get flu shots. I had the second moderna shot and developed a full body rash which didn’t respond to antihistamines or cortisone cream. I was put on a high dose of steroids one day ago and am experiencing a severe setback-unable to get out of bed. Has anyone else experienced this? If so, how long has it lasted? Thank you for your response.
Hello! I’m sorry to hear about the relapses here because of the vaccine. One thing is for sure–I’m not getting it right now. But I just wonder how we will live in the world of covid-19 without getting it. Will we have to live in isolation or wait for herd immunity? It seems life will never be the same. Hopefully, things will get better. I’ve had CFS/ME for 19 years now. Thank you for your posts.
Yes I agree Carole it’s very concerning to hear of the relapses and setbacks experienced as a consequence of the vaccine. It takes so long to get even a little better with this illness and so devastating to relapse badly. I’ve learned to live with ME over many years with four severe relapses. Since being badly affected by tenatus and flu injections decided against having any more. So after doing some reading, thinking the best plan is to wait and see. It does put us in a difficult spot but we can only do the best we can with what we know. I’m very thankful for a community like this where we can share and support each other.
I am almost 36. When I was 25, I received vaccines for a job. I had not had any vaccines since kindergarten. I was given the MMR, TDAP, H1N1, Hepatitis all in one clinic visit. Within a week I had to call out of work because I was ill with a sore throat and fever including fever blisters in my armpits. Over the next 6 months my health declined rapidly; eventually I discovered I was gluten intolerant. At the time I never placed fault with the vaccines, but later when I became pregnant and researched for my baby I learned more about vaccines and immune response. My mother had FM, her sister has MS, and I now have ME that I have been struggling with for 8 years, since giving birth. I have been on supplements, diets, homeopathics. They work as long as I don’t get sick and have no stress (which means I spend about half the year feeling marginally okay and half feeling like I’m dying) and I have been able to work part-time most years, but for the last year despite my arsenal, I have been completely debilitated. Currently I struggle to take showers, sweep the floor, go grocery shopping. I am terrified of what covid will do; a simple cold will cause an ME flare up. But I am equally terrified that even if I manage to get healthy enough to take the covid vaccine (which I am trying to do via immune and cellular health supplements) will I be sent back to bed for who knows how long? How much life will I miss out on, but equally what if I lose my life entirely from contracting covid? In 2019 I got the flu. While my child and husband were sick for a week, I didn’t recover for nearly a month. I lost weight, hair, and my menstrual cycle stopped for 2 months. Stuck between a rock and hard place.
Brendan shared this interesting information, which you may look into to see if this is an option that works.
I think those with past vaccine issues worried about the Covid vaccine worsening their ME should be getting a lower dose shot like they give to babies (with other adult vaccines) where the dose is divided in half then given 4 weeks apart. Immunity will take longer of course to well over 2 months instead of over one approximately 6 weeks.
But because there’s a small amount of us that worsen after vaccination. this may be a prudent move.
I permanently worsened after a flu shot 5 years ago. I even had the baby dose! So personally I’ll be taking even less. Maybe a 1/10th test dose. Then I’ll have to go from there in 1/4 doses 4 weeks apart until I developed antibodies. So could take over 4 months
The good news is there’s plenty of vaccine leftover in the used ampules they come in , meaning I won’t be wasting dosages. But convincing my GP will be a challenge
I’m still pro vaccination for ME/CFS sufferers though, as Covid is just too bad to get.
I recently moved from AZ to MA. My hubby and I spent probably a couple of months gradually then urgently packing up our house and thoroughly cleaning it. Admittedly, he did more than I, especially the heavy stuff, but I did a heck of a lot more than I’d been doing because of my limitations with ME/CFS. During that time, I had only a couple of minor crashes and recovered by the next day. I was thinking it was God’s hand in helping us get everything done in time.
We drove across the country taking 6 days/5 nights to get to our new home. In the past, I would fall asleep almost immediately upon getting into the car. There was only one day when I fell asleep in the car, and that was just dozing for a while. I was always waiting for the shoe to drop to find myself in a severe crash. We have been here for just about a month now with only two separate days in bed. I’ve also been more active. I’m forever grateful, but at the same time, I can’t help but wonder why.
Talking about this with my daughter who is a Nurse Practitioner at a Pain Clinic, she asked when it was that I had gotten my vaccines. My second dose (exactly 3 weeks after the first) was on March 23, right smack in the middle of all the work. That got us wondering if there could possibly be any positive effects with the vaccine on folks like us. She is going to ask her Fibro patients if they have noticed anything positive since their vaccination. I was going to pose this question to a FB group I belong to for ME/CFS sufferers, but speaking of the vaccine is expressly forbidden.
So I’m asking anyone reading this. Have you experienced anything positive with your condition since getting vaccinated? I appreciate your feedback! Blessings on your day.
I’ve had CFS/ME for nearly 38 years…..my doctor who specialized in treating CFS, put me on an allergy free and anti candida diet, prescription Nystatin to kill off candida, and advised me to take multiple high dosage probiotics and kefir digestive enzymes, as most diseases stem from gut health imbalance…….he said that the best way to treat and recover from CFS/ME was to clean up the bowel and clean up the liver, so I also had Vitamin B1 and B6 and B12 injections by The Blue Nurses who came to my home twice weekly for years…..my doctor also diagnosed an amoeba parasite infection in my bowel and put me on the prescription drug Chlorquin/ hydroxychloroquine and this successfully killed the parasite and got rid of my malabsorption problem, my weight increased and I no longer had signs of yellowish juandice but looked a healthy normal pinkish colour…….i have taken other supplements like zinc and Vitamin D3 for the immune system, along with olive leaf extract.
I have slowly improved over many many years……my doctor retired and I am now under the care of another doctor who specializes in treating CFS/ME and immune disorders, and he has prescribed high dosage intravenous Vit C infusions which I have weekly at his clinic, which will be fortnightly, then monthly for maintenance when I am better, as I have improved so much from the Vit C infusions, that I feel I will be healthy again sometime this year in 2021. I asked my doctor whether I should have the Covid 19 Vaccination and he told me that it was not advisable for me to have the vaccine as CFS/ME patients don’t have a regular immune system reaction, and therefore at this stage, I am exempt from having the Covid 19 vaccine…….in time, when I am totally well and better, I may be able to have the vaccine but I will again consult my doctor when that time comes.
I already know that I do not want to have the Astra Zeneca vaccine, as there is a history of blood clots/stroke in my family, and I do not want to take that risk. I would be looking at having the Pfizer or Modern Covid vaccination, if I am ever cleared by my doctor to have one…..I am lucky that i live in Australia, where we have had a good record of getting on top of this virus, but I know that once I am well, and if more travel bubbles open up, I would want to be vaccinated or vaccination may be required as a record on my passport to travel to other countries. But I think it is better to be cautious and not rush into having Covid vaccinations until you have consulted your doctor and havedone more research on the subject first, and have seen scientific research on how people who have been vaccinated, respond way down the track after a considerable amount of time.
I have had both corona jabs and have to say i feel better than i have done in ages, i have m.e but since having the second jab i have more energy and am able to do, may just be a coincidence but maybe it’s given my immune system a boost, i have no idea.
Hi, hope you are still feeling better :-). which covid vaccine did you get? I’m trying to work out which one is the safest bet for someone with severe m.e.