ME Experts recommendations for getting A Covid-19 vaccine

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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.

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26 thoughts on “ME Experts recommendations for getting A Covid-19 vaccine”

  1. 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

    1. 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.

    2. diane lindeman

      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

  2. 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.

    1. 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.

  3. 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?

  4. 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?

    1. 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.

    2. 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/

  5. 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.

  6. 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.

    1. 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.

    2. 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.

    3. 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.

    4. 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.

    5. 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.

  7. 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.

  8. 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.

  9. 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.

  10. 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

  11. 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.

  12. 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.

  13. Shirley McGilbery McGilbery

    After having COVID in Dec., 2020, I stay tired All the time and my joint pain is worse. Shoul d I take the vaccine?

  14. 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?

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