MECFS and Vaccines
The basics
-Vaccine injuries are a rare but real phenomenon and are the cause of some cases of ME
-The risk of developing ME from an infection is much higher than the risk of developing it from a vaccination for that infection
-People with ME may be extra sensitive to vaccination or chemicals in a vaccine and may require changes to vaccination plans. Vaccination can trigger relapse in patient with ME.
-People with ME are extra sensitive to infections and infections are ome of the most common causes of relapse in ME.
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People with ME are particularly susceptible to vaccine conspiracy theories because they have
-Legitimate reasons to distrust the medical profession and/or pharmaceutical industry
-A high chance of having negative side effects from a vaccination or a relapse triggered by a vaccination
-A high chance of knowing someone who was injured by a vaccine (as those whose ME was triggered by a vaccine make up a percentage of the MECFS community)
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What is good
-Making sure you get individual advice about vaccination from a doctor who is informed about MECFS and the risk of relapse.
-Refraining from vaccination in severe patients who are isolated and can not risk a relapse.
-Refraining from vaccination in patients with MCAS or previous reactions to vaccines.
-Utilizing alternative measures to mitigate viral risk like masks, hand washing, vaccinating those around the person with ME, and isolation. (These measures should be utilized even if the person with ME can be vaccinated as ME affects the immune system and makes patients susceptible to break through infections)
-Spreading information explaining why some people cannot be vaccinated to encourage herd immunity among healthy people
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What is bad
-Spreading misinformation or conspiracy theories about vaccines
-Encouraging healthy people to not get vaccinated due to risk of triggering ME (the risk of ME from catching a disease is far higher than the risk of the vaccine for said disease)
-People with mild ME and no other risk factors not getting vaccinated against medical advice due to non-specific* fear of the vaccine (if you are well enough to be out in the community your risk from catching an illness is much higher than the risk from the vaccine and it is better to protect yourself and take the time to deal with side effects.)
*aka no personal reason to believe you are at high risk for negative reaction due to personal vaccination history or chemical sensitivities
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Things to know
-The risk of a vaccine is always lower than the risk of the disease it protects against unless you are allergic to a component of the vaccine.
-Mitigation measures like antihistamines or steroids can help people with overreactive immune systems to be safely vaccinated and these measures should be discussed with your doctor.
-Some vaccines can be given in multiple smaller doses to minimize the risk of a negative reaction. This should be considered particularly in pediatric ME where a lot of immunizations are required.
-Vaccination in severe patients is a matter of risk management and a very individual decision balancing quality of life and risk of death. It is a personal decision that should be respected as severe patients are not out in the community and pose minimal to no risk to others.
-People with ME have good reasons to be skeptical about vaccines and while spreading misinformation about vaccines is bad we need compassion for those who have themselves been taken advantage of. Brain fog and social media echo chambers can make anti-vax rhetoric easy for pwME to believe.
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If you are getting vaccinated
-Plan on relaxing for 72 hours afterwards
-Do not get the vaccine during a crash or flare
-Use supportive care for any flu like symptoms as you would for PEM
-If the vaccine makes you too sick to maintain adaquate hydration seek IV fluids as a primary intervention
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Personal annecdote
I personally have recieved two doses of the phizer vaccination in home. I am a severe ME patient and also have Behcets disease. I am fully bedbound including toileting but made the decision to risk the side effects as I do not have MCAS and have not had a negative vaccine reaction in the past. I took antihistamines and also prednisone at the direction of my rhuematologist to prevent a Behcets flare. I did not have any major side effects or reaction besides some flu like symptoms which were worse on the second dose. I believe getting the vaccination was the right personal choice.
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Summary
If you can be vaccinated you should be. Legitimate reasons not to be vaccinated include previous reactions to vaccines, MCAS and severe or very severe ME. However, some patients with these conditions may still choose to be vaccinated to mitigate the risk of death from a severe infection. Mild or moderate ME patients should try to endure the side effects of vaccination* with close medical supervision as the risk of relapse from an infection poses a much greater risk than the risk of relapse from vaccination. Patients who do refrain from vaccination on any medical grounds should not be judged as there is a legitimate risk benefit calculation in vaccinating ME patients.
*So long as the previous reasons for not vaccinating do not apply
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These resources were used in the construction of this post and additional guidance can be found on the Covid Vaccine in particular from
-The American College of Allergy, Asthma, and Immunology
-MEAction
-Health Rising Covid Vaccine Side Effects Poll
-Bateman Horne Center
-Dr. Nancy Klimas of the Institute for Neuroimmune Medicine has an excellent article
