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Covid and ME/CFS

Resources on ME/CFS and Covid: https://solvecfs.org/the-me-cfs-community-and-covid-19/

About Vaccinating for Covid if you have ME/CFS, by Dr. Nancy Klimas, renowned ME/CFS expert.

"COVID kills people. It kills people with over activated and damaged immune systems preferentially – and that is what ME/CFS is all about. So while there certainly is a risk of an ME relapse with these hyper reactive vaccines (the first wave to be released), you have to weigh the possibility of an ME relapse against the risk of death from COVID-19."

"can drive a classic ME/CFS relapse. So, take an antihistamine before and for several days after the vaccine – the strongest one you can tolerate. (Benadryl is one of the strongest, Zyrtec is another good choice)."

https://www.nova.edu/nim/To-Vaccinate-or-Not-with-MECFS.html

Both conditions are not well understood, but we know a few things.

-ME/CFS experts agree that any major viral illness (which covid is) can cause increased severity of symptoms in ME/CFS patients. (NIH, CDC, Stanford, etc.)

-ME/CFS can follow any viral illness, including covid

-Fauci has said (see article links below) that it is likely we will see more cases of ME/CFS following covid. He notes that many people at this point have ME/CFS symptoms following covid (as quoted in three of the articles below). I assume since the definition of ME/CFS involves 6+ months of fatigue no one can confirm a diagnosis of ME/CFS yet (as ofJuly 2020) since there hasn't been enough time.

-After SARS (a close relative of covid 19), up to 30-40% of survivors got CFS/ME (https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/415378)

-New research shows close links between Long Covid and ME/CFS

US ME/CFS Clinician Coalition Letter: Post-COVID “Long Haulers” and ME/CFS

October 30, 2020 link

LONG COVID and ME

Research is suggesting that roughly half of Long Covid sufferers qualify as having ME/CFS after 6 months. If you have had the symptoms of ME/CFS for over 6 months and have ruled out other things like lyme, etc. and you have had the ymptoms since covid, you very likely have ME/CFS and should seek treatment specific to ME/CFS.

Others with long covid may have POTs or other conditions that are common co-morbidities with ME/CFS (so you may now have BOTH).

Another group of Long covid sufferers without ME/CFS or POTs etc have tissue and organ damage that can be found in scans as a result of covid. That's usually from severe cases.

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MEDICAL PAPERS/RESEARCH linking ME/CFS and Long Covid:

Incidence and Prevalence of Post-COVID-19 Myalgic Encephalomyelitis: A Report from the Observational RECOVER-Adult Study

SARS-CoV-2 can trigger chronic fatigue syndrome Charité study provides evidence to support long-held suspicion

Peer-Reviewed Publication

CHARITÉ - UNIVERSITÄTSMEDIZIN BERLIN

(8/2022)

Transient receptor potential melastatin 3 dysfunction in post COVID-19 condition and myalgic encephalomyelitis/chronic fatigue syndrome patients Molecular Medicine volume 28, Article number: 98 (2022)

ME/CFS and Post-Exertional Malaise among Patients with Long COVID

Neurol Int. 2023 Mar; 15(1): 1–11. Leonard A. Jason* and Joseph A. Dorri

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ARTICLES on Long Covid’s Relationship with ME/CFS (oldest to most recent):

Will Covid-19 Leave an Explosion of ME/CFS Cases in its Wake?

Solve ME (4/2/2020)

Researchers Expect COVID-19 Will Cause Surge Of Chronic Illness, Including ME ME Action, (5/10/2020)

Researchers warn covid-19 could cause debilitating long-term illness in some patients Washington Post (5/30/2020)

Coronavirus may cause fatigue syndrome, Fauci says CNN (7/9/2020)

America’s top covid doctor turns ME/CFS into a subject for general discussion as the pandemic deepens ME Association, UK (7/10/2020)

Dr. Anthony Fauci says that Post-Covid Syndrome is "highly suggestive of" Myalgic Encephalomyelitis ME Association, UK (7/10/2020)

Post-Covid syndrome, Myalgic Encephalomyelitis, and the recurring pseudoscience of mass hysteria (7/27/2020) The Science Bit (UK)

Rehabilitating COVID-19 “Long-Haulers”: The ME/CFS Connection Mebridge (8/4/2020)

Chronic fatigue syndrome a possible long-term effect of Covid-19, experts say CNN CNN (8/7/2020)

Doctors are finding striking similarities between chronic fatigue syndrome and long-term coronavirus symptoms

Business Insider (8/22/2020)

What if you never get better from Covid-19? New York Times (1/21/21) *with a deep dive into CFS/ME

Some Long-Covid cases Have Met the ME/CFS Diagnosis, but That May Solve Nothing The sad thing is how shockingly little we know about myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS). Medium.com 2/24/2021

The tragedy of Long Covid Harvard Health Publishing, Anthony L Komaroff, MD, Editor in Chief (3/1/2021)

Long Covid isn't as Unique as we thought: The nagging symptoms long-haulers experience reveal a frustrating blind spot in medicine. VOX (3/11/2021)

A Stanford scientist's quest to cure his son could help unravel the mystery of Covid-19 long haulers CNN (3/12/2021)

The Medical System Should have Been Prepared for Long Covid VICE (3/18/2021)

How COVID long-haulers might renew the focus on chronic fatigue syndrome
Podcast on NPR "WHY" (3/26/2021)

Long Covid isn’t as unique as we thought- The nagging symptoms long-haulers experience reveal a frustrating blind spot in medicine. Vox (4/7/2021)

Little-known illness turning up in COVID long-haulers- by Cindy Loose, Kaiser Health News on pbs.org (6/1/2021)

‘I felt betrayed’: how Covid research could help patients living with chronic fatigue syndrome- by Christina Frangou, The Guardian (6/30/2021)

How Long COVID Is Helping Young Women With Chronic Fatigue Syndrome

Refinery 29, Lucia Osborne-Crowley (8/15/ 2021)

For many, long COVID looks a lot like chronic fatigue

by Johns Hopkins University (8/26/2021)

Long-Haulers are Fighting for Their Future by Ed Yong, The Atlantic (9/1/2021)

What Causes Long COVID Is A Mystery. Here's How Scientists Are Trying To Crack It, All Things Considered, NPR 9/20/2021

Could long covid unlock clues to chronic fatigue and other poorly understood conditions? Washington Post, Frances Steed Sellers (11/7/2021)

So you've got long COVID? Here are 5 things you should know. SF Chronicle, Effie Seiberg (11/8/2021)

Even Health-care workers with long COVID are being dismissed, the Atlantic, by Ed Yong (11-24-2021)

Unknown Long COVID Connection – myalgic encephalomyelitis / chronic fatigue syndrome, Mirage News (Australia) (11-25-2021)