Long COVID Has Forced a Reckoning for One of Medicine’s Most Neglected Diseases -- Atlantic Article 9-26-22

Wayne

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I haven't read the whole article yet, but it looks good. The Atlantic normally requires a subscription to read their articles, but often sites like these will let you read a "complimentary" number of articles before requiring payment. I posted the introduction below the link.

Long COVID Has Forced a Reckoning for One of Medicine’s Most Neglected Diseases

Only a couple dozen doctors specialize in myalgic encephalomyelitis, or chronic fatigue syndrome (ME/CFS). Now their knowledge could be crucial to treating millions more patients.

"Kira Stoops lives in Bozeman, Montana—a beautiful mountain town where it sometimes feels like everyone regularly goes on 50-mile runs. Stoops, however, can’t walk around her own block on most days. To stand for more than a few minutes, she needs a wheeled walker. She reacts so badly to most foods that her diet consists of just 12 ingredients. Her “brain fog” usually lifts for a mere two hours in the morning, during which she can sometimes work or, more rarely, see friends. Stoops has myalgic encephalomyelitis, or chronic fatigue syndrome (ME/CFS). “I’m considered a moderate patient on the mild side,” she told me.​
ME/CFS involves a panoply of debilitating symptoms that affect many organ systems and that get worse with exertion. The Institute of Medicine estimates that it affects 836,000 to 2.5 million people in the U.S. alone, but is so misunderstood and stigmatized that about 90 percent of people who have it have never been diagnosed. At best, most medical professionals know nothing about ME/CFS; at worst, they tell patients that their symptoms are psychosomatic, anxiety-induced, or simply signs of laziness. While ME/CFS patients, their caregivers, and the few doctors who treat them have spent years fighting for medical legitimacy, the coronavirus pandemic has now forced the issue.​
A wide variety of infections can cause ME/CFS, and SARS-CoV-2, the coronavirus that causes COVID-19, is no different: Many cases of long COVID are effectively ME/CFS by another name. The exact number is hard to define, but past studies have shown that 5 to 27 percent of people infected by various pathogens, including Epstein-Barr virus and the original SARS, develop ME/CFS. Even if that proportion is 10 times lower for SARS-CoV-2, the number of Americans with ME/CFS would still have doubled in the past three years. “We’re adding an immense volume of patients to an already dysfunctional and overburdened system,” Beth Pollack, a scientist at MIT who studies complex chronic illnesses, told me..."​
 

Gingergrrl

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I haven't read the whole article yet, but it looks good. The Atlantic normally requires a subscription to read their articles, but often sites like these will let you read a "complimentary" number of articles before requiring payment. I posted the introduction below the link.
@Wayne My sister sent me this article this morning and I was about to post it and then saw that you already did! It is a really well-written article and really worth reading. I was able to read it and print it out from the Atlantic's website for free and it was not behind a pay-wall. It is also on Apple News :thumbsup:
 

hapl808

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Again, ANYTHING from Ed Yong about long Covid or ME/CFS or the frickin' phone book and I'll read it. He might be the only high profile journalist that accurately covers long Covid and ME/CFS without jumping to conclusions or taking liberties or falling in love with his own pet theories.

If 1/64th of the medical establishment were like him, we'd already have effective treatments.
 

Gingergrrl

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I don't want to take this thread off track debating abuse as a cause of ME/CFS or Long Covid. This thread is about an amazingly well written article by Ed Yong. He wrote it in order to demonstrate how Long Covid is forcing a reckoning here in the US (and hopefully world-wide) on ME/CFS and bringing to light the decades of neglect by researchers and the medical system.

Long Covid is bringing about an awareness of Post Viral Syndromes to people who have literally never heard of them before (including doctors). This article was incredibly effective just by the number of people who have read it and contacted me about it today.
 
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Has anyone heard of any consideration to form a dedicated research body for ME/CFS, like NIH has for cancer?
2.5 million with ME/CFS
2.5 million with CFS from long CovidA
50+ million with Fatiguing Diseases (mostly autoimmune)
Many of these have EBV as the underlying cause, certainly Long Covid & MS.
EBV was considered a possible cause of ME/CFS at one point, I know the rituxamab trial was a disappointment, so has EBV been ruled out?
Even if there are multiple underlying causes, it still seems like Fatiguing Diseases should have a government umbrella organization, that all the separate disease organizations could pool their knowledge under. I know the Bateman Foundation is focused on this, that's a start.
Pardon me if any of this has already been discussed before!
 
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I've never been more optimistic about scientific breakthroughs in post-viral illnesses, and I'm hopeful it will yield benefits for all sufferers, whether they have post-covid mecfs or post-something-else-mecfs.

The reason? Research into long covid is incredibly widespread. This is no longer a cosy community of a few dozen researchers, spending a few million a year and putting out a couple of papers a week. There's thousands of researchers showing up to try to figure things out. And they're able to look at all the dead ends we've been down already, to see what might *not* be the answer (e.g. psychological explanations, and ruling out persistent viral infection just because you can't see it in the blood.)

As just one marker of how the whole entire world is looking into long covid, here's a simple cross-sectional multi-centre study on it, from Iraq!

https://pubmed.ncbi.nlm.nih.gov/36196947/

I don't think the answer will come from Iraq, but it's a sign - the research environment is dramatically different to before.