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

I suppose it can be a defining chatacteristic without being a differential characteristic.

When aastatement of this sort was inadvertently made earlier it was hastily corrected.

 

yes quite but it seems to have now taken on a life of its own.

also if you do a search on 'nhs post-exertional malaise' ironically the main nhs england website myalgic encephalomyelitis/chronic fatigue syndrome comes up and yet there is no mention of post-exertional malaise.

 

ahimsa said

We seem to have been saddled with this as the description of PEM, even by ME doctors who should know better yet it should be included that problems can be delayed and prolonged but that seems to have been dropped along the way. A worsening of symptoms like pain or fatigue after physical or mental exertion is common to many illnesses. This immediate reaction often happens in ME but there are other less usual things.

With ME physical exertion can cause mental symptoms and mental exertion can cause physical symptoms. It is rare to not be able to walk because you have been reading a book.

There are significant immune problems with exertion, sore throat, swollen lymph glands, night sweats.

The strangest thing is it is very common for a few days to pass before the reaction occurs, in fact it is possible to not realise you have done too much until the reaction 3 days later.

It is so frustrating that we have finally got the abnormal reaction to exertion back as the main symptom instead of fatigue but now it is being distorted so it is losing all meaning again.

 

Yes, the defining part of ME PEM that has been attributed to 'boom and bust' behaviour by our BPS overlords. The same must be happening to patients in the LC clinics who have what we would consider PEM. (as opposed to this distorted definition).

 

The Swedish Research Council is allocating 50 million SEK to research into post-COVID syndrome

https://www.vr.se/english/just-now/...sek-to-research-into-post-covid-syndrome.html

14 out of 56 applications were approved.

3 million goes to a BPS project at the Stress Research Institute, Department of Psychology at Stockholm University, led by BPS proponents Andreasson & Jonsjö. This project started out as a ME/CFS study in 2019 but has now been widened to include post-COVID and exhaustion disorder (burnout, which is a separate diagnosis in Sweden: "a stress related psychiatric disorder caused by long-term psychological stress that is often, but not exclusively, work related"). Their underlying hypothesis is that "there are many common biopsychosocial vulnerability and perpetuating factors for fatigue, regardless of the main diagnosis of the patients." Forum thread here.

 

Thread

https://twitter.com/user/status/1462488862815440899

 

https://twitter.com/user/status/1462291408266616833

 

https://twitter.com/user/status/1462529253380132864

 

Many annoying things in this article, including people musing how many will need cognitive rehabilitation. Going 2 years into this and they can't even move on from their delusions, they still cling to their failed models no matter how much reality punches them in the face.

It's a shame that the RACGP blocked all efforts that would have allowed health care to deal with this, explicitly fought them head-on for years. Not that she would understand the connection. Or have done anything about it, as they are still not doing anything about it and failing to understand it's the same problem.

https://twitter.com/user/status/1462537808929701888

 

This is probably a very nice public health message but the audience that needs to hear this is not watching this on television and will not care for this message. It's medical professionals who need to hear this, and also for those empty words to have substance. Health care is completely paralyzed over this and no one wants to even say it, let alone do something about it.

https://twitter.com/user/status/1462702837754785796

 

Thread on LC with many sources. Good overview of the issue so far.

https://twitter.com/user/status/1462370030893641731

 

Today in tales from dystopian nightmares, a discussion of Long Covid between health officials in the Netherlands and patient advocates has been pushed back to next year... because of the high number of infections. Which will increase the problem further. When you don't understand the problem to the point of making it worse for no other reason than simply not having bothered to understand it. This is usually the point in the plot where things get worse and everyone is confused and the furious people on the side being all "yeah that's what we were trying to tell you but you just kept shouting over us so great job there".

At this point there's a case to make to name the broad category of chronic illness as Medical Dunning-Kruger disease, or something like it, made worse entirely out of ignorance, which only makes things worse and worse with time.

https://twitter.com/user/status/1462786990525632519

 

Good article from a GP with Long Covid. Other than not naming ME but mentioning PEM... But I think she knows since she tagged Doctors with ME on Twitter, so it's odd that the article does not mention anything about this being an old problem. Focuses mainly on dysautonomia and neurological symptoms, which kind of covers ME without mentioning it. Oh, well.

It also mentions pins-and-needles and whole-body shaking, the latter which is often reported but I haven't seen it anywhere other than patient testimonies. I'm pretty sure it makes up 90%+ of what the ideologues call "functional seizures", if not all of it.


Through My Eyes: Long neuro-COVID
https://www.medicalnewstoday.com/articles/through-my-eyes-long-neuro-covid


And of course the gaslighting. Holistic sounds nice in principle, until the principle is applied in practice:

“Despite a differential of long COVID, I was treated like an anxious little girl; my concerns were not taken seriously despite me being a doctor myself. I told him he was wrong in his diagnosis and that I felt very unwell. But my time was up, he had poorly patients to see, and to him I wasn’t poorly. A nurse brought a wheelchair, and I was escorted out of the emergency room.”​

https://twitter.com/user/status/1462873462171652105

 

"The long COVID clinic in Montérégie-Ouest describes understanding post-exertional malaise as “the key to giving yourself a chance to stabilize your state and improve your quality of life.”

"Throughout the year, she’s met with different doctors and taken part in several research studies.

She still does regular exercises to try to gain her strength back and help with her breathing. She takes anti-inflammatory medication for lingering heart issues and, more recently, started receiving Botox injections in the muscles around her vocal cords".

They don't understand PEM.

https://montrealgazette.com/news/long-covid-gets-little-attention-in-quebec

 

The contrast between patients almost universally condemning the useless clinics and the smug overconfidence of the clinics that they are nailing it looks gross. They seem to think that all that's needed is to scale the useless clinics and everything will work out. Blind and deaf, almost impressively so.

As is the continued pretense that general practice is handling any of this. "Just go see your GP", they say, indifferent to the patients telling them the GPs don't know a damn thing about this and I guess they're just not bothering to find out that obviously nearly all pwLC do that at first, what the hell do they think they do?

Yeah this is really not helping. Never gave a damn about us, were perfectly content leaving us to die without doing a damn thing. I guess discouraging simply means giving up. This is the cheapest of all messages, rings completely hollow.

 

https://www.sciencedirect.com/science/article/pii/S1876034121003786

Journal of Infection and Public Health
Available online 18 November 2021

Original Articles
Long Term Predictors of Breathlessness, Exercise Intolerance, Chronic Fatigue and Well-being in Hospitalized Patients with COVID-19: A Cohort Study with 4 Months Median Follow-up

Imad M.TleyjehabcdBasemaSaddikef1Rakhee K.Ramakrishnanef1NourahAlSwaidang1AhmedAlAnazig1DeemaAlhazmig1AhmadAloufia1FahadAlSumaitg1Elie F.BerbaricRabihHalwaniefh
https://doi.org/10.1016/j.jiph.2021.11.016Get rights and content


Abstract
Background
Post-acute COVID-19 syndrome (PACS) is an emerging healthcare burden. We therefore aimed to determine predictors of different functional outcomes after hospital discharge in patients with COVID-19.

Methods
An ambidirectional cohort study was conducted between May and July 2020, in which PCR-confirmed COVID-19 patients underwent a standardized telephone assessment between 6 weeks and 6 months post discharge. We excluded patients who died, had a mental illness or failed to respond to two follow-up phone calls. The medical research council (MRC) dyspnea scale, metabolic equivalent of task (MET) score for exercise tolerance, chronic fatigability syndrome (CFS) scale and World Health Organization-five well-being index (WHO-5) for mental health were used to evaluate symptoms at follow-up.

Results
375 patients were contacted and 153 failed to respond. The median timing for the follow-up assessment was 122 days (IQR, 109–158). On multivariate analyses, female gender, pre-existing lung disease, headache at presentation, intensive care unit (ICU) admission, critical COVID-19 and post-discharge ER visit were predictors of higher MRC scores at follow-up. Female gender, older age >67 years, arterial hypertension and emergency room (ER) visit were associated with lower MET exercise tolerance scores. Female gender, pre-existing lung disease, and ER visit were associated with higher risk of CFS. Age, dyslipidemia, hypertension, pre-existing lung disease and duration of symptoms were negatively associated with WHO-5 score.

Conclusions
Several risk factors were associated with an increased risk of PACS. Hospitalized patients with COVID-19 who are at risk for PACS may benefit from a targeted pre-emptive follow-up and rehabilitation programs.

Keywords
Post-acute COVID-19 syndrome
PACS
Long COVID
Breathlessness
Exercise Intolerance
Chronic Fatigue
Well-being

 

Uh.

Also, haven't seen much of this, glimpses, but tomorrow will be a LC awareness day for some.

https://twitter.com/user/status/1463234468186107918

 

There was a large piece on long covid on Channel 4 News last night; no mention of post-viral illnesses let alone ME/CFS.........it was 'all new', and the researcher interviewed optimistically predicted they might have some answers by next year.

 

New long Covid piece by Ed Yong with mentions of ME:

The Atlantic What Medicine's Own COVID Long-Haulers Have Faced by Ed Yong

quotes:

For other medically trained long-haulers, the skepticism of their peers—even now, despite wider acknowledgment of long COVID—has “been absolutely shattering,” says Clare Rayner, an occupational physician who is part of a Facebook group of about 1,400 British long-haulers who work in health care. “That people in their own profession would treat them like this has led to a massive breakdown in trust.” Having dedicated their working lives to medicine, they’ve had to face down the ways its power can be wielded, and grapple with the gaps in their own training. “I used to see medicine as innovative and cutting-edge, but now it seems like it has barely scratched the surface,” Misko told me. “My view of medicine has been completely shattered. And I will never be able to unsee it.”

...

Neither Brown nor Oller knew about post-exertional malaise or ME/CFS before they got long COVID. Oller added that she initially thought little must have been written about it, “but no, there’s a whole body of literature that had been ignored,” she said. And if she hadn’t known about that, “what else was I wrong about?”