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Continued:

Summary on Twitter from Ed Yong:

- Only a couple dozen doctors specialize in chronic fatigue syndrome (ME/CFS). Now their knowledge could be crucial to treating millions more patients. https://www.theatlantic.com/health/archive/2022/09/mecfs-chronic-fatigue-syndrome-doctors-long-covid/671518/

I was thinking primarily of ME/CFS communities, but other papers on patient online communities could be helpful too

Thank you so much, @Hutan The more papers, the better :-)

This is perfect, @Sly Saint Thank you!

Does anyone know of papers exploring online ME patient communities? Don't know quite where to start..

The Danish newspaper B.T. has had a few articles about ME lately. Today they have asked some really good and direct questions to the Danish Health Authority about how they can define ME as a functional disorder, treat the disease with GET and still claim to base this on the latest science. The...

MIT Technology Review We've only just begun to examine the racial disparities of long covid quote: Researchers suspect that some populations are being hit especially hard by long covid because of disparities in health care. In fact, that’s exactly what happened with covid itself. According to...

the BMJ How "long covid" is shedding light on postviral syndromes by Brian Owens quote: At first, the patients with long covid seemed to have a lot in common with people with postural orthostatic tachycardia syndrome (POTS), a blood circulation disorder characterised by elevated heart rate and...

An article about the study which also mentions ME: News Medical Why fatigue from long COVID goes beyond simply feeling tired Quote: Fatigue is the most reported symptom, with 41% to 60% of patients experiencing debilitating fatigue beyond six months and even up to a year. This long-lasting...

What is DNRS? ETA: The Dynamic Neural Retraining System™ :wtf:

The Norwegian ME Association had a webinar that got uploaded yesterday with Vicky Whittemore and Joseph Breen providing an update on NIH research programs on ME/CFS. (Haven't watched it myself yet)

Fortune Now we know how many people COVID is keeping out of the workforce - and how much it's costing employers. Long COVID is only the tips of the iceberg quote: Long COVID is roughly defined as symptoms that persist or appear long after the initial COVID infection is gone, but a consensus...

The Atlantic "One of Long COVID's Worst Symptoms Is Also Its Most Misunderstood" by Ed Yong Quotes: Robertson predicted that the pandemic would trigger a wave of cognitive impairment in March 2020. Her brain fog began two decades earlier, likely with a different viral illness, but she...

Medscape Post-COVID Fatigue, Exercise Intolerance Signal ME/CFS by Miriam Tucker quotes: "The major finding is that ME/CFS is indeed part of the spectrum of the post-COVID syndrome and very similar to the ME/CFS we know after other infectious triggers," senior author Carmen Scheibenbogen, MD...

Quote: An important research challenge is the lack of a validated biomarker, laboratory-based test, and animal model, likely attributed to inconsistency in protocols, such as cell isolation, sample type, and technique. These challenges provide important lessons for research of Long Covid. By...

Today, Explained is a podcast from Vox. Their latest episode is titled: Your long Covid questions, answered". https://play.acast.com/s/todayexplained/e18e2150-514d-11ec-b8b1-6751975f2025 Dakota_150 has provided some quotes on Twitter:

The Norwegian public broadcaster has an article today about the young and severe ME sufferer Aurora who is stuck at a nursing home for elderly people. ME-syke Aurora (25) er tvunget til å bo på sykehjem google translation: ME sufferer Aurora (25) is forced to live in a nursing home Although...