Covid-19 Resources for People with ME

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#MEAction will Host Seminars on Post-Viral Illness for Clinicians and Covid “Long Haulers”

Categories: Press releases

Press Contact: Adriane Tillman; [email protected]

A cohort of COVID-19 patients are still sick months after clearing the virus, many of whom were considered “mild” cases. Scientific studies show that post-viral illness is common following large viral outbreaks.

Dr. Anthony Fauci said people who are not recovering after contracting COVID-19 are showing symptoms “that are highly suggestive of myalgic encephalomyelitis and chronic fatigue syndrome.”

“Brain fog, fatigue, and difficulty in concentrating so this is something we really need to seriously look at because it very well might be a post-viral syndrome associated with Covid-19,” said Dr. Fauci in a July 9th interview, repeating this concern in several other interviews. (https://www.meaction.net/2020/07/10/dr-anthony-fauci-says-that-post-covid-syndrome-is-highly-suggestive-of-myalgic-encephalomyelitis/)

#MEAction is hosting two seminars in August to help educate clinicians, medical students and “long hauler” Covid-19 patients about the neurological, often post-viral disease called ME/CFS.

#MEAction is an international organization of patients, caregivers and allies who have been fighting for recognition and care for people with ME/CFS for years.

  • “Long haulers” patient seminar, Aug. 7: #MEAction will host a seminar for post-COVID-19 “long haulers” on Friday, August 7 at 11am PST to learn more about ME/CFS as a potential diagnosis, in partnership with Body Politic and the COVID-19 Working Group New York. https://www.meaction.net/longCOVID/
  • Clinician seminar on post-viral illness, Aug. 29: #MEAction is hosting a clinical seminar for medical practitioners and medical students on recognizing and addressing post-viral ME/CFS on Saturday, August 29 at 3pm PST. https://www.meaction.net/seminar/

#MEAction activist Whitney Fox, 31, developed ME/CFS after contracting the H1N1 virus. She is terrified for this next wave of ME/CFS patients knowing how difficult it is to get a timely diagnosis and care. A lack of effective treatments and advice to “push through” means that Fox now struggles to even read or watch TV without triggering cognitive symptoms.

“It is imperative that post-COVID patients are believed when they say they are not recovering,” Fox said. “If I hadn’t ignored my body’s warning signs, I don’t think I would be as disabled as I am now.”

Studies on other outbreaks — including those of Epstein-Barr virus, Ross River fever and Q fever — have shown that up to 12 percent of people who fell acutely ill with these infections never regained full health. Many were eventually diagnosed with ME/CFS. COVID-19 patients are reporting ongoing symptoms that resemble ME/CFS, including severe fatigue, cognitive problems, chills and sweats, and sleep problems.

That a wide variety of different infectious organisms can lead to the same disease-state may seem surprising – but ME/CFS may be caused by the body’s unexpectedly uniform reaction to any number of assaults.

“I wouldn’t suggest that coronavirus is the cause of ME; rather, innate immune mechanisms in response to a virus may cause it, meaning that many viruses can probably [initiate ME/CFS],” said Dr. Ian Lipkin, the Director of the Center for Infection and Immunity and a coronavirus and ME/CFS expert.

Researchers at Stanford, Columbia and the NIH are launching studies on COVID-19 patients to understand how the virus may lead to ME/CFS.

“The COVID-19 pandemic is an unprecedented opportunity to study the biological factors that may determine or predict the development of ME/CFS,” said Ron Davis, PhD, director of the Stanford Genome Technology Center. Davis is overseeing a team of researchers investigating COVID-19 patients to understand if and how their infection leads to ME/CFS.

In addition, COVID-19 is hitting racial and ethnic minorities and those of low socioeconomic status the hardest; yet this demographic is also the least likely to be diagnosed with ME/CFS even when they meet the diagnostic criteria. The crisis of care will be magnified in these communities.

Read more about the potential for COVID-19 to cause chronic illness, including ME:

#MEAction is an international network of patients, caregivers and allies empowering each other to fight for health equality for ME. www.meaction.net

Categories: Press releases

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