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#MECFS
Dan Wyke
Dan_Wyke
Programme on #LongCovid on @BBCRadio4 this morning. Treatment unlikely to involve a prescription for medication; instead work with a physiotherapist and psychologist. Patients better start getting used to self-management and
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Maija Haavisto
DiamonDie
Today, #May12, is #mecfs awareness day. While #COVID19 can damage almost any organ (possibly even testes, pancreas etc), CFS/ME is likely among the most common sequelae. Why focus only on
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Ben H
benh_mecfs
#MEAwarenesshourThe patients, carers and scientists in the #MECFS community are some of the smartest, most empathetic people I've ever met. If you're suffering #LongCovid or are #covid1in20 ,we are here
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Tilman Andris
TilmanAndris
So yesterday it was #MEawarenessDay/#MillionsMissing. Some tweets were sent. Now #PEM. Just fired up my computer for #MEawarenessHour after a day necessarily spent mainly in darkness and notice that I
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It'sME(Jaime)
exceedhergrasp1
There definitely have been chronic, neurological issues associated with post-SARS, to the point that there is a "post-SARS syndrome" entity in the literature. A few of these, results of a
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Hugh Lewis
ProfHughLewis
Without wishing to subtweet anyone, I am seeing much discussion of #LongCovid & similarities (or not) with #MECFS. I can only speak of my lived experience with the latter &
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tommy
tommyinboots
THREADhttps://twitter.com/twitchyspoonie/status/1310778552770392072 and @twitchyspoonie is right: although QoL ratings aren't infallible (what is?), they are SOMETHING. and #MECFS is near the top, charted by more than one source. right
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Naomi Chainey
GnomesChainey
1) This idea of "secondary gains" is coming up a lot this week in relation to #LongCovid. I have a few thoughts on it. #NEISVoid #MECFS #DisabilityPride https://twitter.com/TomKindlon/status/1317884385094414336 2) You
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Bea is Chronically Persisting
Be_Kinderr
Dr. Klimas’ #MECFS treatment recommendations, part of her #LongCovid presentation today to Body Politic #longhaulers organization. Link to watch her talk (this slide starts at 56:36): https://youtu.be/yXnUW4HpJNs She mentions that
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Jennifer Brea🦒
jenbrea
I am going to write something that will be difficult to understand unless you have been unable to work, severely incapacitated, homebound, or bedridden due to a viral infection for
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Ben H
benh_mecfs
#MEawarenesshourThe IOM report estimated the economic cost for #MECFS to be $17billion to $24billion dollars annually.That's just the US. This is not taking into account human cost and suffering, something
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Tom Kindlon
TomKindlon
[Thread]Doctors with #longCOVIDI think many with #MyalgicEncephalomyelitis /#ChronicFatigueSyndrome may find the changed attitudes of interest. https://www.bma.org.uk/news-and-opinion/doctors-with-long-covid#longhaulers #longCOVID #PostCovi
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Winston Blick
winstoncb
Some highlights from the recent Nancy Klimas webinar hosted by @itsbodypolitic on #LongCOVID #MECFS (moderated by the wonderful @AlisonSbrana) https://www.youtube.com/watch?v=yXnUW4HpJNs&t=2256s For some intervention ideas from Dr. Klim
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Tilman Andris
TilmanAndris
I remember @richardvallee referring to @MEcfs someplace as the catch-22 disease: whatever you do or say, you are f****d.• Some activity —> others assume capacity you don’t have • Not
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Winston Blick
winstoncb
1/ At a recent @MEActNet briefing, Dr. Anthony Komaroff confirmed his earlier prediction that we had reason to expect some w/ COVID-19 would develop a debilitating chronic fatigue syndrome w/
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Jennifer Brea🦒
jenbrea
Just read a story about a woman who had a stroke near her brainstem and almost died. She did not fully recover and lives with dysautonomia, vision problems, and partial
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