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

There are 2 references to "chronic fatigue syndrome" in this CBC (Canada) piece:
https://www.cbc.ca/news/canada/kitc...ity-of-guelph-covid-19-long-haulers-1.5811853

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https://twitter.com/user/status/1331051654762860545

https://twitter.com/user/status/1331052554659229697

 

HSJ podcast: Long-COVID care cannot be delayed any longer (19 November 2020)

Posted by PatientSafetyLearning Team

https://www.pslhub.org/learn/corona...november-2020-r3599/?tab=comments#comment-288

 

https://twitter.com/user/status/1330948930318733312

 

https://twitter.com/user/status/1331583597824909312

 

https://twitter.com/microbeminded2/status/1330921754374647808?s=2

https://twitter.com/user/status/1330926780992118785

 

What a dysfunctional mess. It's been months and exactly zero progress, no greater understanding out of sheer stubbornness with debunked myths. Not even able to compare two apples because it's not deemed worth the effort to pick them up for a comparison.

The outcomes here are a direct measure of the effort that is put into it. The effort is pathetic, basically non-existent. There is no sugar-coating it, this is pathetic system-wide failure.

I did not have high hopes but I did have some hopes of the most basic competence rearing its way by now. Nope. Not even a little. This is why we can't have nice things. Literally.

 

Frequent neurocognitive deficits after recovery from mild COVID-19

https://academic.oup.com/braincomms/advance-article/doi/10.1093/braincomms/fcaa205/5998660

 

COVID-19 long haulers are developing debilitating, chronic condition called POTS

https://www.wate.com/health/coronav...g-debilitating-chronic-condition-called-pots/

Video report on POTS. Pretty good, the transcript is on the page.

I don't know how things differ elsewhere but in Canada, neither POTS nor dysautonomia officially exist, it has pretty much the same status as ME, some physicians accept it, most have never heard of it. What a mess.

 

Probably one for @Jonathan Edwards, given the strong assertion of a "definitive" case:

https://twitter.com/user/status/1331409488641867778




First flare of ACPA-positive rheumatoid arthritis after SARS-CoV-2 infection

https://www.thelancet.com/journals/lanrhe/article/PIIS2665-9913(20)30396-9/fulltext

 

Trigger warning for distressing material.

Spoiler

https://twitter.com/user/status/1331745992413212673

 

Oh dear. Video on BBC news website this morning

Long Covid: How knowledge of ME could help sufferers - BBC News

Woman looking fabulous recommending that people 'be selfish'
I mean i know what she's trying to say & that perhaps the editing has created something other that she'd have liked. Also recognising that it takes guts to go public like that. But this is not how i want to see my devastating illness represented. Resting isnt selfish!

 

Merged thread

Long Covid: How knowledge of ME could help sufferers - BBC News

Very annoying 'music' as so often with BBC videos, and featuring a young woman with lipstick and nail varnish.

Summary:

Long Covid: How knowledge of ME could help sufferers

While both ME and long Covid, or post-Covid syndrome, are long-term illnesses, they aren’t the same thing. But, there are ways in which our knowledge of ME has helped experts treat long Covid. It’s also helped those with the illness understand what they’re going through. Evan was diagnosed with ME in 2017, and she believes her experience can help her support those living with long Covid.

 

My main issue with it, apart from the issues you raised, was her repeated use of the advice to 'be selfish' as if self care were selfishness, reinforcing the meme that PwME are selfish & self absorbed. Its really not how i want to see my devastating illness represented. The BBC's focus on fatigue alone in the explainer was also aggravating. FGS no wonder people with long covid dont believe it's like ME!

I mean kudos to the lady who did it, it's never easy & the editing may have been unfortunate/against her wishes. But agggh!

 

Hmm, how do they know that for certain??

 

Ugh, I just hate when people do this with ZERO evidence like it’s settled science. Most evidence right now looks like long COVID is going to be ME/CFS for most of those that don’t recover. Most scientists right now would say the symptoms are alarmingly similar and they don’t know yet.

 

I didn't think this was a great video. Could have been so much better. Not sure the battery charging to 85% is a good analogy. Try 50% max. Cardinal symptom given as 'extreme tiredness'... etc. And yes, it looks like a sub-set of long-covid patients have post-viral illness and will progress to ME/CFS.

 

And this bullshit:

Can BBC spend a little more time doing some f—-ing research please? Most evidence right now looks like long COVID is going to be ME/CFS for most of those that don’t recover. Most scientists right now would say the symptoms are alarmingly similar and they don’t know yet.

 

SomersetLive Bath woman describes 'harrowing' impact of living with long Covid

Jenny, who has lived with chronic fatigue syndrome for 14 years after catching glandular fever aged 21, initially thought the symptoms of long Covid were linked to her condition, but she soon changed her mind.

“I knew it wasn’t the chronic fatigue syndrome, because I had terrible chest pressure and pain in my heart and my lungs, and headaches," she said.

Jenny's also on twitter

https://twitter.com/user/status/1331900203251736577

 

Easy. You define "same" in such a way as to make them different.