ME/CFS and Long COVID: What’s the Connection?

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The ME community has faced incredible challenges in achieving compassionate clinical care and adequate research funding.  Now we face a sobering, new reality: a population of post-COVID patients, or “long haulers” are experiencing long-term consequences of COVID-19.  While those with “long COVID” may be diagnosed with other post-viral diseases and disorders or recover completely, many will eventually be diagnosed with ME.

Regardless of their eventual diagnosis, people with complex, chronic illnesses have knowledge and experience these new patients and their clinicians need.  It’s important that we as a community are ready to provide support and understanding.  We cannot allow this new swell of individuals to face the same challenges many people with ME did.

Dr. Fauci from the National Institutes of Health, when questioned by Terri Wilder from #MEAction New York, said,  “…a considerable number of individuals who have a post-viral syndrome that… can incapacitate them for weeks and weeks following so-called recovery…. have [symptoms] that are highly suggestive of myalgic encephalomyelitis and chronic fatigue syndrome.”​

#MEAction hosted a seminar for post-COVID-19 “long haulers” on Friday, August 7, to learn more about ME/CFS as a potential diagnosis after viral infection, in partnership with Body Politic and the COVID-19 Working Group New York.

The seminar discussed:

  • symptom presentation and diagnosis of ME/CFS, from Dr. Lucinda Bateman, MD;
  • pacing and management strategies from Brian Vastag, person with ME;
  • coping with a new chronic illness, from Wilhelmina Jenkins, person with ME;
  • advocating in your doctor’s office and beyond, from JD Davids, person with ME
Jaime Seltzer, #MEAction Director of Scientific and Medical Outreach begins the seminar.

We want everyone to have access to this information, so we have made the entire video available to you with subtitles.

We encourage you to share, engage, and spread the word so that everyone who may be newly diagnosed with ME — and those new to chronic illness in general — have access to these resources.

Also, please take a look at this Atlantic article featuring many #MEAction resources, including #MEpedia, which gives context to the relationship between long COVID and ME.

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