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

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Isn't this burnout an area of special interest for Gerada anyway?

I seem to recall something a couple of years ago where she was going on about GP burnout and how those pesky patients are causing significant stress and burnout in the medical profession.
 
I think it's very likely some health professionals will suffer stress related conditions like burnout in the current situation. That is a separate question from whether some covid-19 patients will suffer from PVFS, and/or ME as a long term consequence.

If Gerada is muddling the two together, and ascribing her few days of unpleasant fatigue after covid-19 as either, that is also problematic. Especially if she ascribes her recovery from it as due to her own positive thinking.
 
I spotted the Telegraph article earlier today, the one with our friend SW offering to do research; hmmmm, not entirely confident that it will be helpful research.

Sorry but an image popped into my head:

‘Have no fear, Sir Simon is here,’ he says as he rides in to the rescue.... perhaps to the tune of the William Tell Overture. ;)
 
Merged thread. Note - this is the same article already linked in this post.


Article : Coronavirus could cause secondary illnesses including chronic fatigue syndrome, experts warn

Subtitle : New medical papers suggest the contagion can get deep into our vascular system and even our brains

Link : https://www.telegraph.co.uk/global-...-cause-secondary-illnesses-including-chronic/

Note that Weasley gets a mention near the end of the article. And the article is not popular on Twitter. Even PACE gets a mention :



Covid-19 may trigger post-viral fatigue syndrome in some patients, experts have warned, amid growing evidence that an infection could have significant long term health repercussions.

While initial reports focused on the impact that the coronavirus has on the respiratory system, a stream of medical papers published over the last few weeks suggest that the contagion can get deep into our vascular system and even our brains.

“We’re at the very primitive stage in terms of understanding the long term effects of this pandemic,” said Dr Harvey Moldofsky, former professor of Psychiatry and Medicine at the University of Toronto’s Center for Sleep and Chronobiology. “But it’s clear that it doesn’t just attack the lungs, it’s everywhere.

“Based on my experience with Sars, I am deeply concerned that our definition of ‘recovered’ is far too narrow. It’s likely that some patients will experience chronic fatigue syndromes for months or even years after an initial infection,” Dr Moldofsky told The Telegraph.

Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), triggers symptoms including extreme fatigue, unexplained muscle or joint pain, heachaches and unrefreshing sleep.
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Moved post responding to Telegraph article

"Experts have warned"

Literally quotes the prime anti-expert on the topic, a failure on all counts, the very embodiment of the fact that self-proclaimed expertise is not the same thing as genuine expertise, something that requires expertise to understand.

Thing is, on the long term, no matter what he does here, his legacy as a failure, a saboteur, a monster, is guaranteed. Nothing he does meanwhile will change that, the legacy is cemented forever. But he may choose to further harm more people in exchange for making his spoils last a bit longer. Just for a few years of raising the stakes of his delusions, leaving off with an explosion of even more suffering.

Which he clearly did. Seriously this is worthy of study all by itself, the hubris is just off the scales here. Trading millions of lives for a mediocre career was not enough, more lives, more suffering, are needed to feed both the ego and the id, to remain a celebrity physician with an unearned reputation just a tad longer.

Then again, maybe he is simply that delusional and actually thinks he did a great job. I doubt it, but I'm not sure which is worse, the outcome is identical anyway. It's still far more disappointing that this nonsense is still treated as legitimate and valid by others, complete system breakdown.
 
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I just clicked on the Reddit thread from Vastag's tweet. The first in that thread is just appalling. Person having difficulty breathing and requested a CT scan from GP. Who refused and said would refer to a Medical Unexplained Illness clinic. A lot more agreeing, one had a GP who did suggest ME/CFS.

It's a pretty sad thread - these were all young, fit and healthy. Some being pressured to go back to work too. One parent threatened to get offspring sectioned. Sorry, don't mean to be depressing, but am just horrified by all this.
 
ladycatlover said:
I just clicked on the Reddit thread from Vastag's tweet. The first in that thread is just appalling. Person having difficulty breathing and requested a CT scan from GP. Who refused and said would refer to a Medical Unexplained Illness clinic. A lot more agreeing, one had a GP who did suggest ME/CFS.

It's a pretty sad thread - these were all young, fit and healthy. Some being pressured to go back to work too. One parent threatened to get offspring sectioned. Sorry, don't mean to be depressing, but am just horrified by all this.
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Yes it just all sounds too familiar.
How many being given the wrong advice/treatment will it take before the NHS/NICE acknowledge that the symptoms are not MUS?
Interesting that the current NICE guidelines differentiate between the COvid-19 viral pneumonia and bacterial pneumonia:
Differentiating viral COVID-19 pneumonia from bacterial pneumonia
It is difficult to determine whether pneumonia has a COVID‑19 viral cause or a bacterial cause (either primary or secondary to COVID‑19) in primary care, particularly during remote consultations. However, as COVID‑19 becomes more prevalent in the community, patients presenting with pneumonia symptoms are more likely to have a COVID‑19 viral pneumonia than a community-acquired bacterial pneumonia.

3.8 COVID‑19 viral pneumonia may be more likely if the patient:

  • presents with a history of typical COVID‑19 symptoms for about a week

  • has severe muscle pain (myalgia)

  • has loss of sense of smell (anosmia)

  • is breathless but has no pleuritic pain

  • has a history of exposure to known or suspected COVID‑19, such as a household or workplace contact.
3.9 A bacterial cause of pneumonia may be more likely if the patient:

  • becomes rapidly unwell after only a few days of symptoms

  • does not have a history of typical COVID‑19 symptoms

  • has pleuritic pain

  • has purulent sputum.
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the major difference being the existance or lack of pleuritic pain. Yet from what I have read so far most post-covid patients report chest pain?

Given all the evidence so far that it is highly likely that a fair percentage of these patients will go on to develop ME (particularly if they are given the wrong advice/treatment at an early stage) I would have thought that the new ME guidelines should be higher priority.............but then I wouldn't be surprised if Wessely and co have already started on proposed guidelines for "Post-Covid syndrome".
 
ladycatlover said:
Not sure if it will work or not as I went straight from the link in the tweet. But this is where I ended up:

I'm sick and tired...

Please be aware it's very sad and worrying, a lot of people not getting proper treatment. :cry: :mad:

Have some hugs to strengthen you! :hug: :hug: :hug:

(edited to remove large block of text that didn't intend to include)
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It's like watching a car crash in slow motion, while you stand there helpless.....

My heart goes out to these guys. It's far too soon to think they'll end up one of the millions missing but I reading tgeir posts brings back unwelcome memories for sure.

I'm staggered (& you really would think I'd know better by now) by the casual carelessness, the laziness of some doctors. This is a disease we know little about, had never even heard of pre 2020, are still finding atypical onset symptoms and yet a GP can say, with all certainty, someone who is less than two months in needs referral to IAPT or a MUS clinic.

Why are the doctors being consulted here not demanding post covid clinics for patients? That way the patients could be given some relevant support and the medical profession could continue to learn more, not only about covid but also the immune system. Let there be psych support as an add on for those that want it.

There is no care for the long term health of these patients. No concern for the iatrogenic harm of being dismissed and ignored. There is no curiosity about the disease and anything we could possibly learn about immune response and long term effects.

All this in a wealthy first world nation.

Where would we be if army surgeons, Lister, Marie Curie and so on had shown the same disinterest.

Mental midgets snoozing lazily on the shoulders on giants.
 
Sorry if this has been mentioned but I was also concerned to see Wessley’s comments in the New Scientist article the other week talking about a possible post CoVid illness. He refers to CFS as having “other factors contributing to longer term disability”. What other factors does he have in mind? Unhelpful beliefs and deconditioning? Is he planting the seed that if some post CoVid patients get ill long term it is the ‘other factors’ that contribute most to this even if mentions some biomedical stuff such as infection getting into the CNS, a sleight of hand slipping in one biomedical term?

From the article:

“Other viruses are known to trigger CFS after infection, such as the Epstein-Barr virus, says Simon Wessely, former president of the Royal College of Psychiatrists. “We don’t know about corona, but I think it will lead to many, many cases of post-infective fatigue syndrome.”

“There is a long history of infections as a trigger but other factors contributing to longer term disability,” adds Wessely. “If the virus is found to enter the brain, this might increase the risk.”

Read more: https://www.newscientist.com/articl...r-post-viral-fatigue-syndromes/#ixzz6LNQ9dNU1
 
Given all the evidence so far that it is highly likely that a fair percentage of these patients will go on to develop ME
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I share the concerns by Colleen Steckel on this issue -



Edited to add, I see Colleen’s Facebook note has been put up on this thread already. I agree with Colleen the harmful narrative that could develop if it is assumed from the start post CoVid patients have ME and yet it turns out they are not the same. The post CoVid patients may develop some post viral fatigue state that may be long lasting but ultimately self limiting. And also agree with Colleen’s addendum that research that is careful to not group post CoVid patients as the same patient group as ME but compare and contrast the two patient groups would be helpful.
 
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‘False Dawn’ Recovery Haunts Virus Survivors Who Fall Sick Again

https://www.bloomberg.com/news/arti...ry-haunts-virus-survivors-who-fall-sick-again
Her experience adds to a growing number of reports of patients appearing to have a reactivation of symptoms, testing positive again, or even potentially being reinfected. Such incidents don’t align with the generally accepted understanding of how virus infections work and spread.
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This so-called false-dawn phenomenon is puzzling health experts as they try to come to grips with the mysterious pathogen that emerged only five months ago. Solving the puzzle will inform a broad range of challenges, from the development of an effective vaccine to how soon governments may be able to safely end lockdowns and allow normal life to resume.
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This is a great example of how utterly FUBAR the whole situation has been in regards to ME, PVFS and chronic illnesses in general.

This is clearly PVFS, always different depending on the specific pathogen and circumstances but nevertheless the overarching concept. But because of the exclusive focus and misplaced obsession with fatigue, misrepresented as lack of motivation no less, using the term is confusing when the claims aren't met with the usual disbelief of "this is not possible". It's clearly not just fatigue. Which ME, PVFS and related patient populations have been screaming for decades.

But because the terminology has been deliberately confused and obfuscated to push the ideology of psychosomatic models to post-viral chronic illness, here where it matters the most, people have to use another term entirely, a new term for an old concept that has been destroyed beyond all recognition. Complete dumpster fire.

I expect lots of physicians will reject calling this PVFS because it's clearly more than fatigue. Which, yeah, WE TOLD YOU SO! Past failure, most of which are still current failures, are creating all new failures, making existing failures worse and, worst of all, making clarity impossible.

The book of the germ theory of disease has to be rewritten, extended a few chapters anyway. Germs don't only cause problems when they are in outbreak mode. They keep causing problems in the body, they have an impact on the host. This has been denied and buried for decades, preferring instead the mediocre absurdity of angels dancing on hairpins.

Medicine could already have had lots to offer those people. Instead there's nothing but confusion. And of course the BPSers will give it all to try and keep their hands in a choking handle on our necks.
 
I don't think we can assume that ongoing or recurring symptoms in people with Covid are PVFS of the same sort people get after they have recovered from something like flu. They may be suffering from unrecognised organ damage or reactivation of the virus. I dont think anybody knows what is going on.
 
Sly Saint said:
Yes it just all sounds too familiar.
How many being given the wrong advice/treatment will it take before the NHS/NICE acknowledge that the symptoms are not MUS?
Interesting that the current NICE guidelines differentiate between the COvid-19 viral pneumonia and bacterial pneumonia:

the major difference being the existance or lack of pleuritic pain. Yet from what I have read so far most post-covid patients report chest pain?

Given all the evidence so far that it is highly likely that a fair percentage of these patients will go on to develop ME (particularly if they are given the wrong advice/treatment at an early stage) I would have thought that the new ME guidelines should be higher priority.............but then I wouldn't be surprised if Wessely and co have already started on proposed guidelines for "Post-Covid syndrome".
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Tagging @dave30th just in case you’ve not seen this evidence that at least some post covid are getting handled as MUS
 
anniekim said:
@rvallee, may I ask do you recognise that there can be a post viral fatigue syndrome that can be long lasting, say even up to 2 years, but ultimately self limiting?
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When I studied microbiology in the early 70s, it was accepted as fact that some infections could take a long time to recover from, two or three years in some cases. Flu, especially was considered to have a long time to resolve in some patients.

This was different from ME which was a separate illness in the same way MS is a separate illness.

The term used was often post viral syndrome. When they renamed ME as post viral fatigue syndrome for what seemed like a few months before MS and SW came in with CFS we were left with confusion between a synonym for ME and the name for a protracted weakness after an infection. Typical BPS folly.
 
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