News about Long Covid including its relationship to ME/CFS 2020 to 2021

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rvallee said:
I don't know what Avi Nath had in mind when he was tasked with the ME NIH portfolio, but I'm fairly sure this kind of thing here would never have crossed in mind if he had a thousand years to think of all the possibilities.
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The fact they were forced to start the NIH studies has saved them from looking really stupid in the face of people like Paul Garner talking about the read across. Just think what position they could have been in if they’d started five or ten years or 20 years earlier..............
 
NelliePledge said:
The fact they were forced to start the NIH studies has saved them from looking really stupid in the face of people like Paul Garner talking about the read across. Just think what position they could have been in if they’d started five or ten years or 20 years earlier..............
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Yes indeed, but it should also be remembered (and I know some people don't like me saying this) that the ME/CFS community itself hasn't helped itself as much as it could have by how relatively little it has raised privately for research, meaning there were less researchers in the field to make research grant applications than in other fields. It has been encouraging to see more being raised in recent years.
 
Leila said:
Paul Garner and the founder of Body Politics on long haul Covid, mentioning of ME "CFS" several times, recommend pacing

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I watched the segment and it was great. Wow, to be able to show this to Wessely and his ilk decades ago, basically their worst nightmare. On the BBC, too. Especially the advice about connecting with others and empowering patients. COVID isn't only making those who have it sweat.

One important point Garner made bears repeating loud and clear: we don't know how to help those people yet, but we do know enough to prevent many from getting worse. My words, not his, but this goes by trashing the entire BPS model and advising proper pacing, rest, sick leave and awareness of those things throughout medicine.

It's impossible to say how long it will take to have reliable beneficial treatments so this is particularly important because current advice is wrong and harmful and people are sick now, are being faced with pressing demands from work, family and obligations now and they are likely making the wrong choices now, making themselves sicker and possibly harder to effectively treat down the line.

The NICE proceedings and the Cochrane review are slated to report within a year. That's far too long and just the UK, elsewhere there isn't much happening yet. Things need to happen now, far and wide.

I'm really curious what Garner will think of the whole Cochrane saga.
 
I too couldn't help but to think how this clip might sound in Wessely's/BPSer's ears :-)

Pacing, patients connecting online, reactive anxiety/depression. All the "triggers" there on mainstream TV. Hope this will be how the narrative on this will be framed in the public discussion.
 
CNN: Oregon woman has battled coronavirus symptoms since March

"There may well be a post-viral syndrome associated with Covid-19," Fauci, director of the National Institute of Allergy and Infectious Diseases, told a news conference organized by the International AIDS Society. The group is holding a Covid-19 conference as an add-on to its every-other-year AIDS meeting.
Fauci said the symptoms resemble those seen in patients with myalgic encephalomyelitis, or ME, once known as chronic fatigue syndrome.
"If you look anecdotally, there is no question that there are a considerable number of individuals who have a post-viral syndrome that in many respects incapacitates them for weeks and weeks following so-called recovery," Fauci said.
"There are chat groups that you just click on and see people who recovered that really do not get back to normal," Fauci added. They report symptoms such as brain fog, difficulty concentrating and fatigue that resemble the symptoms of ME, he said.

ETA: CNN also made a short news update on dr. Fauci mentioning ME in connection with the corona virus:
Coronavirus may cause fatigue syndrome, Fauci says
 
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Sly Saint said:
@Robert 1973

I'm guessing this post in the New Scientist is also you(?)

https://www.newscientist.com/letter...-impacts-possible-for-those-who-had-covid-19/
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Yes, that’s me. Thanks for sharing. I only just seen it.

It is somewhat edited. It’s not a big deal but I didn’t write that CFS is “also known as myalgic encephalomyelitis (ME)”. My original letter only referred to ME/CFS so I understand why they felt the need to expand it but I wouldn’t have used their wording. I might say “ME is sometimes referred to as CFS” but not the other way around.

The second paragraph of my letter about DecodeME didn’t make the cut but I also sent a note to the editor suggesting that New Scientist might consider an article on DecodeME, so I hope they may do that. I can’t download the e-magazine from the library until tomorrow so I don’t know if there might be anything about it in this weeks edition.

One question that I asked myself after sending the letter is, do we know for certain that some viral infections trigger ME/CFS? I know that we know that ME/CFS often follows acute viral illness but could it be that people who are about to develop ME/CFS are particularly susceptible viral illnesses, that old viruses are reactivated at onset, or that the initial symptoms just mimic viral illness (fever, sore throat, swollen glands etc)?

Any thoughts on this @Jonathan Edwards?

[edited grammar for clarity]
 
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Kalliope said:
Fauci said the symptoms resemble those seen in patients with myalgic encephalomyelitis, or ME, once known as chronic fatigue syndrome.
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Kalliope said:
"If you look anecdotally, there is no question that there are a considerable number of individuals who have a post-viral syndrome that in many respects incapacitates them for weeks and weeks following so-called recovery," Fauci said.
"There are chat groups that you just click on and see people who recovered that really do not get back to normal," Fauci added. They report symptoms such as brain fog, difficulty concentrating and fatigue that resemble the symptoms of ME, he said.
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That is likely to be tremendously helpful to quote when trying to get health authorities to stop naming the illness CFS.
 
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Sly Saint said:
Also uses 'chronic fatigue' much too often for my liking:(
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Somebody told him on Twitter this is a difficult term to use..He is new to this, I think, and it does need time to understand what implications different words have and what they mean depending who is using them in what way/context.

Maybe he also wants to make clear that he doesnt know yet if this in fact is ME. So far it's Post Covid.
 
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