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

This was on Reporting Scotland last night:

https://www.bbc.co.uk/news/uk-scotland-54893317

'The data suggested that 60,000 people in the UK would go on to experience Covid symptoms for three months or more - a crude calculation based on population means this figure in Scotland is up to 6,000.

Microbiologist Prof Tom Evans, part of the team in Scotland working on the forthcoming guidelines, said this calculation was not yet reliable.

He said: "The data is not that great. Those who are still suffering symptoms after three months is roughly about 2% of respondents - but that is only an estimate and we're very keen to explore those who are probably under-represented in those surveys, particularly older people, those from different ethnic groups and also from deprived communities." '

 

Thanks Ebb

 

This morning was the 3rd time that I've heard 3 different infectious disease doctors say on 3 different networks, that one of their long-covid patients have left their facebook support group because they've recovered after 9 months of being ill.

Nine months is an interesting number, because that is exactly how long it took me to recover from my ME virus, but . . .

 

Not sure this is the right place for this - mods please move if warranted.

Long COVID: don’t consign ME/CFS to history
Peter White
I welcome your call for patient involvement in defining the symptoms of ‘long COVID’ (Nature 586, 170; 2020). However, in drawing comparisons with the history of chronic fatigue syndrome, also known as myalgic encephalomyelitis or ME/CFS, you perpetuate a dangerous misconception.

Your use of the past tense — for example, in saying that people with ME/CFS “struggled” to have their condition recognized, they “were not” listened to and the “patient voice was marginalized” — wrongly implies that those problems have been solved. The reality is that the tragic situation continues.

Global research spending on ME/CFS averaged just US$6.5 million per year globally in 2006–15. This received a boost when the US National Institutes of Health committed to more than doubling its spending in this area, reaching US$15 million in 2017 (Nature 553, 14–17; 2018).

Like long COVID, ME/CFS is an intractable, heterogeneous condition. Its causes are unclear, preventing long-term effective treatment. The urgent need for high-quality, imaginative and ambitious research should therefore not be undermined by downplaying the current impact of this condition on millions of people around the world.

In our quest to help people with long COVID, let’s be candid in our portrayal of ME/CFS, the ongoing struggles of those with the condition, and its uncertain prognosis.

Nature 587, 197 (2020)

doi: https://doi.org/10.1038/d41586-020-03136-0

https://www.nature.com/articles/d41...d-id=24D1FA8052751FFA6E3B38C681765021744C9750​

 

New research on work and benefits in the wake of ‘Long Covid’

https://inclusionproject.org.uk/blog/research-long-covid

 

From a newspaper article, this study was linked. Seems informal, "Covid-19 Longhauler Advocacy Project".

Doesn't add much by itself but the questions asked are relevant, as is usually the case with patient-lead research. Though again it reaffirms the fact that severity of initial infection is largely irrelevant. Which is interesting as this was one of the earlier tropes that never really died despite having been debunked.

Heavily biased for long haulers, as in this is representative of a sample of long haulers, not a sample of people who had Covid.


1,200 Longhauler Response Study on Post Covid Syndrome Experience & Needs

https://docs.google.com/document/d/...zVN8fBTqftim8J33M39NrzMFXFYMPl4dVxQhOk8CHFesM

 

When less relevant questions are asked... CFQ so not very useful. I have no idea why people go through this trouble only to ask so few questions, so restricted in scope. Did not even ask questions about symptoms, as far as I can see. Only "fatigue", whatever they mean by fatigue.

Includes a half-baked "trial" of hydroxycloroquine or prednisolone. No idea why.


Persistent fatigue following SARS-CoV-2 infection is common and independent of severity of initial infection

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0240784

Again reaffirming that severity of initial illness is largely irrelevant. Which suggests most of the organ damage plays little to no role in those symptoms.

Unfortunately using a useless tool like CFQ guarantees its irrelevance.

Lots of muddled, and not very informed, discussion of ME. And then there's this, of course:

This:

is probably a hidden variable of past post-viral syndrome, as it's usually misidentified as anxiety and/or depression. Not entirely but probably mostly.

It really seems like the medical definition of "recovery" needs serious changes.

This is poor thinking:

 

The videos (almost 2h) tend to be too long for me to watch, but what a great panel: Mady Hornig, Fiona Lowenstein, and David Tuller.

https://www.youtube.com/watch?v=7oBbbx46igk

 

What a lineup! Wow! Looking much forward to dive into this episode of This Week in Virology!!

 

Seen a few reactions from long haulers and the verdict is... very unimpressed.

Just one but there are more:

https://twitter.com/user/status/1326979780856721408

 

Yeah, it's definitely too long! we just couldn't stop yapping!

 

It was great even so, though I agree that it needed an ME patient there as well.

 

I'm no fan of "lists" and none would be thorough besides the usual suspects.

But is there something that accomplishes the same, of simply keeping out bad actors out of the process, without looking like a witch hunt? It's mostly a school of thought, not necessarily a specific group of people, besides the main ones.

Frankly I'd say it's anything BPS that does it, no matter who. No one working from a "BPS perspective" has contributed anything and all harmful contributions derived from the BPS ideology. Useless at best, harmful at worse.

https://twitter.com/user/status/1326992902006956037

 

https://twitter.com/user/status/1327036423061508098

https://twitter.com/user/status/1327067657024249857

 

Thank you Dr Hanson!

Btw as someone mentioned in the Twitter feed, some of the symptoms she said that aren’t shared isn’t totally accurate.

For me I have frequent tinnitus only since getting ME and much worse during overexertion. I also had bad heart palpitations for first 8 months of ME (~800 monomorphic PVCs per day that I could feel inside my chest like my heart was going crazy) it started right at the end of the viral infection and this was measured by a cardiologist and when they slowly went away it was measured by a cardiologist and of course they had no explanation. I would expect many with long COVID will also have the heart palpitations subside over time unless they have long term heart damage.

 

I’m sorry that this is off-topic, but tweets in posts have never loaded in Safari on iPhone for me (for years I think) and all of a sudden today or yesterday they started working? I almost didn’t notice because I was just happy to see them without clicking to Twitter.

 

This isn't academia @Esther12. It is a commercial conference outfit for marketing to other people wanting to make money out the situation.


These things have been around for years. The problem now is that real academic meetings seem to have faded out into CV polishing venues for juniors.

 

https://www.youtube.com/watch?v=94ZYVxtdNHY

"There's also been something niggling at me for a long time now when i describe long covid to people often you get the response uh oh it's just post viral fatigue it's me/cfs we've seen those conditions before this is nothing new but it's not i should know because I've had both i know what they both feel like I had post-viral fatigue for a year after after glandular fever back in 2000. And i know what that felt like it was pretty bad but long covid is different it is worse."

 

Maybe it feels different because it's a stronger manifestation of the illness rather than the milder self-limiting manifestation this person had previously.

The author of this video previously found extremely high rates (in comparison to general population) of previous PVFS in long covid sufferers. That seems to strengthen the idea that they are the same or at least involve some very similar mechanisms (such that a person who is susceptible to one will also be susceptible to the other).

 

Ramsay pointed out 30 odd years ago that that not all post viral fatigue following glandular fever could be equated with ME, which he characterised as having the relapsing/remitting symptoms.