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

STAT News Denied Treatment, some Covid long-haulers could become lifelong-haulers

For most long-haulers, the illness is neither fatal nor curable. Their symptoms, like Michael’s, can resemble chronic fatigue syndrome or myalgic encephalomyelitis with crushing exhaustion, migraines, disrupted sleep patterns, and pain. Others have lung scarring or heart damage.

Originally written off by the medical community, doctors now recognize it with a variety of terms, such as post-acute Covid, chronic Covid, long Covid, or post-Covid syndrome. Long-haulers are more descriptive in their labels. I’ve heard it referred to as “a Dementor sucking my soul,” “living death,” and “an internal prison.”

 

https://www.theguardian.com/society...ng-covid-symptoms-to-those-of-ebola-survivors

 

Just read that Guardian article myself – the final paragraphs stuck me too:

But if there’s another lesson to be learned from Chikungunya, it is that these patients with lasting symptoms can’t simply be ignored. “Chikungunya is destroying the Brazilian health service, and it’s not so much because of the acute infection, but because of these lasting health problems,” said Altmann.

“I’m not sure our policymakers have this on board when they think about long Covid – that we may not just be talking about getting through this winter or this spring, but perhaps 300,000 people in the UK and rising, who have a chronic problem.”

 

I'm not sure if this has been posted before. Mentioned on BBC News today:

Imperial College Healthcare working with English National Opera on singing programme for Covid-19 patients
05th Aug 2020
https://www.imperial.nhs.uk/about-us/news/eno-breathe

https://www.bbc.co.uk/news/av/uk-55819360
English National Opera lessons for long Covid sufferers

 

Running thread on this call, includes slides:

https://twitter.com/user/status/1354870316921614338


The full presentation: https://emergency.cdc.gov/coca/ppt/2021/012821_slide.pdf.

Not much to show for now. Interesting to see the same findings on white matter. Otherwise this is far too diverse to pin. Interesting to see the note on one slide over how patients almost never have a single "primary" problem but multitudes, which is a complete break from standard clinical practice.

 

https://twitter.com/user/status/1354882280871890947

https://twitter.com/user/status/1354882283212333070


https://twitter.com/user/status/1354882285896691713

https://twitter.com/user/status/1354882287016566784

 

And, for good measure, ENO's press release, with more details:
https://eno.org/news/national-rollout-of-eno-breathe-programme-for-people-recovering-from-covid-19/

Glad to hear they're doing something, because they seem to have been pretty quiet for most of the last 10 months, compared with other similar organisations

 

https://twitter.com/user/status/1354914802850811906

Code:

https://twitter.com/mlbowmandptccs/status/1354914802850811906

 

https://www.networks.nhs.uk/editors-blog/supporting-staff-the-emergence-of-2018long-covid2019

Full article can be read via the link given. It is primarily aimed at NHS workers.

Edit: Apparently the Wessely quote is quite old and comes from this article:

https://www.newscientist.com/articl...navirus-trigger-post-viral-fatigue-syndromes/

The article points HR managers to ME/CFS resources (ME Association and BACME).

 

Weird how they make no mention that Sir Simon Wessely is famous in large part because he solved post-viral fatigue syndrome when quoted on an article about this very topic. No mention that he has famously developed safe and effective treatments for it, commonly used in standard clinical practice and assumed to be effective (don't ask for evidence though). There's even a whole public controversy over this, with the NHS and UK medical establishment insisting that he is 100% about this, hence why it has been used in clinical practice for years.

This is an article published by the NHS. And they don't even mention him being the "world-leading expert" on this very topic. The NHS has spent billions in resources from his and his peers' work on this topic and its derivatives, adopted his opinion as a fact and educated its own trained doctors pretty much straight from the source.

How weird. Almost like his entire "expertise" is widely known as a sham, such that no one expects him to have any useful knowledge of it when it counts. He is just quoted generically, here used to imprint the idea of "think psychiatry" and no more, with a platitude of no more usefulness than tossing a coin. Will it, will it not? This expert doesn't know. This expert who has explained and solved this very problem for which no solution or explanation exists.

It's like the movie Brazil, except instead of being the government it's medicine.

 

https://twitter.com/user/status/1355203370622005254


It's true, but just as we should not assume that the ME/CFS-like long covid cases are ME/CFS, we should also not assume that they are distinct. They could be the same illness. The question will need to be clarified with research.

 

Interesting the way she says she has more understanding of “these chronic conditions” (just after ME and CFS mentioned). Makes me wonder whether she might have been at least somewhat dismissive of them in her head which might help explain why she has seemed fairly desperate to keep them separate.

 

UNDARK - When Children's Covid-19 Symptoms Won't Go Away

Contains interviews with several patients and experts, including Amy Proal:

While she cautions that researchers simply cannot know whether the long-haulers will become life-longers, “it’s very unlikely,” she says, that SARS-CoV-2 would be the one virus that doesn’t have an associated chronic condition.

and Leonard Jason

“We’re going to need to develop a training manual to help professionals deal with this crisis,”

 

something that I've noticed is that where long-covid is concerned people tend to talk about neurological
problems, whereas with ME/CFS it tends to get called cognitive problems.
I know there is a medical distinction between the two but more often than not 'cognitive' tends to be more associated with mental health issues (eg DWP disability assessment has cognitive problems in the mental health section).
Was using 'cognitive' rather than 'neurological' as far as ME/CFS concerned, part of the reframing when the cognitive behavioural model was adopted?

 

Continuing on that thought, it's worth keeping in mind that the current vaccination strategy will eventually make LC the dominant problem. Not that the strategy is bad, but without recognizing the massive public health crisis LC represents, that once the more vulnerable populations are vaccinated it's safe to basically take a natural herd immunity, which no doubt many countries will do, the problem will be maximized. Many already are on that path anyway.

Because right now the schedule is set so that the most vulnerable to LC are those who will be vaccinated last. Which is OK, but highly problematic with medicine still in denial that this is a serious problem. Too many people assume that vaccination is the end. Not even close.

But it's very hard to give legitimacy to LC without recognizing the existing ongoing crisis of chronic illness, which gives huge incentives to keep dismissing it. Which would guarantee the worst outcome for everyone, health care systems included. And governments, millions of disabled people in the prime of their lives is a pretty bad fiscal policy.

Likely this will vary between countries. It's clear that many European countries are too deep in the BPS rabbit hole to undo it without massive embarrassment and so have even stronger incentives to deny the whole thing.

Ignorance is only bliss to those who never face the consequences of that ignorance.

 

https://twitter.com/user/status/1355184457049911296

 

think this might have already been posted somewhere



eta: found the pic in a recent tweet; I don't know the source.