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The ME/CFS Community and COVID-19​

We at Solve M.E. know that the ME/CFS community has always been well-informed, resilient, and far more experienced than the general population when it comes to taking extra precautions in order to protect one’s health. For years, people with ME/CFS have been working and doing advocacy from home, practicing physical distancing, and sometimes even practicing self-quarantining just to survive. With that understanding, this page is designed to provide the most current COVID-19 information that is specifically relevant to the ME/CFS community in hopes that it will add to our cumulative understanding of how to best maneuver these challenging times. Please check back for updates.

The CDC notes that people who are immunocompromised might be at an increased risk for severe illness. The Bateman Horne Center reports, “The immune dysregulation of ME/CFS/FM may reduce ability to fight viral infections. Additionally, the presence of chronic inflammation, allergies, asthma, mast-cell activation may pose additional risks.”

Because many people with ME/CFS are often immunocompromised, Solve M.E. fervently believes that people with ME/CFS should take the same precautions as a “high risk” population. For the safety of you and your loved ones, Solve M.E. strongly encourages people with ME/CFS and their caregivers to take every possible precaution to avoid exposure to the virus, including frequent handwashing, wearing masks in public, social distancing of 6ft/2m, and following your local guidance regarding gatherings outside your household.

A recent survey by the You + ME Registry found that health is as likely to worsen as it is to improve after vaccination compared to controls, for whom health is more likely to stay the same.

About five months after receiving their first or only shot of Covid-19 vaccine, 30% of survey participants with Long Covid indicated their health had improved, 28% reported it had worsened and 42% responded that it had not changed.

Read the full results here.

Lucinda Bateman, MD, of the Bateman Horne Center published a Vaccine Guide with information, as well as a COVID-19 Information and Resources page with regular updates.

Nancy Klimas, MD, Director of INIMpublished her recommendations in this piece: To Vaccinate or Not – with ME/CFS. Dr. Klimas includes detailed recommendations for the ME/CFS community, as well as additional information about partial vs. absolute protection. She also adds insights from the ACAAI (see below).

The American College of Allergy, Asthma, and Immunology (ACAAI) has issued guidance for physicians and other providers related to the risk of an allergic reaction following vaccination with an mRNA-based coronavirus disease 2019 (COVID-19) vaccine.

ACAAI’s recommendations are in line with guidance issued by the Centers for Disease Control and Prevention. Specifically, that patients experiencing a severe allergic reaction after getting the first shot should not receive the second shot.

Read more here.

Charles W. Lapp, MDHunter-Hopkins Center, P.A., offers his insights here.

Further Reading:

The Centers for Disease Control and Prevention (CDC) frequently publishes guidelines regarding isolation and staying safe during the evolving phases of the pandemic. 

Crisis Support:

Crisis Text Line: https://www.crisistextline.org

  • Crisis Text Line is a nonprofit organization that offers crisis support through texting, 24 hours a day, 7 days per week.
    From the US text: 741741
    From Canada text: 686868
    From the UK text: 95258


Further Reading:

Webinars:

Check out the COVID-19 and ME/CFS Webinar playlist on our YouTube page.


From the Experts:

Additional Information for

long-haulers

Long Covid

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medical-providers

Medical Providers

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covid-19-info-center

COVID-19 Info Center

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