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

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(Australia)
GPs and hospitals to tackle ‘long COVID’ together
A new clinical pathway linking GPs, hospitals and coronavirus survivors is set to launch as an expert calls for focus on the long tail of the virus.
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https://www1.racgp.org.au/newsgp/clinical/gps-and-hospitals-to-tackle-long-covid-together

‘It’s very hard to know how to go about preventing long COVID. It’s really very disconcerting,’ Professor McLaws said.
‘We need to focus on this if we are trying to protect the young and ensure they have a good middle age.’
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No mention of chronic fatigue syndrome, or ME specifically, but there was this:
He recently treated patients with severe fatigue, sleep and mood disturbances and heart palpitations, a combination suggesting both PTSD and chronic fatigue. Such patients represent the extreme end of the spectrum, he said, having often come out of intensive care with lung scarring and/or cardiac abnormalities as well as deconditioning.
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I don't recall any mention of exercise from my quick skim.
 
Strange how there is no clear reference to PVFS/ME/CFS. It seems to be an implied undercurrent. There seems to be a deliberate return to the policy from around 1990. Don't give the diagnosis. We don't want to frighten the horses. Or to confirm them in their beliefs.
 
Covid and the brain: ‘This has taken almost everything that is me away from me’
Thousands of patients are continuing to experience debilitating cognitive dysfunction
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https://www.irishtimes.com/life-and...-everything-that-is-me-away-from-me-1.4343793

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  • 1 hour ago
Cognitive problems with word finding, information processing, short term memory are all part of myalgic encephalomyelitis or ME/CFS. I keep looking for mention of it in the Irish Times articles on covid longhaulers, and its never mentioned (possibly because there are no ME specialists in Ireland, no consultants for severely ill sufferers, and little awareness among GPs).

It’s likely many longhaulers will develop ME, as it’s been seen after other outbreaks like SARS and Ebola. Post infectious chronic illness is not a new thing. Of course, it must be confirmed whether for some people infection still is ongoing.

For those patients who may be developing ME, please do not try to push or exercise your way out of this. ME can be drastically worsened by exertion of any kind (small activities like getting dressed, housework, computer work) let alone actual exercise. You may be able to do the activity and feel ok during, but crash hours or a day afterwards. This is called post-exertional malaise (PEM), the cardinal symptom of ME.

To the Irish Times writers, please research and mention ME in your articles. Dr. Fauci has mentioned it as a probable outcome. Dr. Avi Nath at NIH has also. Major news outlets all have made the connection (CNN, Atlantic, Nature Magazine, WaPo, Guardian).
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From doctors as patients: a manifesto for tackling persisting symptoms of covid-19

https://www.bmj.com/content/370/bmj.m3565

We write as a group of doctors affected by persisting symptoms of suspected or confirmed covid-19. We aim to share our insights from both personal experience of the illness and our perspective as physicians.
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Tackling this problem will involve collaboration between politicians, healthcare services, public health professionals, scientists, and society. We call for the following principles to be used so that the best possible outcomes can be achieved for all people affected by persisting symptoms of covid-19.
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Further down it cites "no decision without me" yet doesn't even include the patients here... ugh. We are excluded from society, so it doesn't include us.
The effects of the virus should be studied in the way that any other disease would be, with thorough attention paid to epidemiology, pathophysiology, and management.
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But. Many diseases aren't studied. In fact it's precisely why something that has been happening constantly for decades is "taking medicine by surprise". That's literally the problem here: not all diseases are equal and some are fully discriminated against. The regular way of doing things is what broke here. Medicine has explicitly refused to do this despite consistent demands and clear evidence for decades. As a choice. We have been begging for this and it's constantly rejected with prejudice. Again: as a choice. People chose this and imposed this choice on us. Blame them, your colleagues, they deserve the hell out of it.
Failure to understand the underlying biological mechanisms causing these persisting symptoms risks missing opportunities to identify risk factors, prevent chronicity, and find treatment approaches for people affected now and in the future.
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This is completely incompatible with the BPS/FND/MUS thing that has captured medicine over the last few decades. So incompatible in fact that only one of those things is possible. As long as this ideology remains, none of this will happen. This is why it did not happen over the last few decades and we are stuck in this situation where medicine is constantly "surprised" by things that happen every single day.
Where current guidance has been issued, such as the statement from the National Institute for Health and Care Excellence5 cautioning against graded exercise therapy in the context of covid-19, it should be communicated quickly to clinicians on the front line.
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NICE did not caution against GET. It fact they issued a statement afterward emphasizing that. It merely said it should not be assumed GET would be used. It currently is, as we knew it would. And NICE can't recommend against GET for COVID-19 while keeping it for ME so they can't do that yet, too much escalation of commitment, too many egos and careers to protect.
“No decision without me”6—lessons learnt from other illnesses have shown the importance of involving those most affected.
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Hi. We need to talk. Like, right fucking now. You speak of lessons. What lessons? Medicine is still in the business of maligning chronic illnesses and lying about us, not learning a damn thing by ignoring everything we say and trampling over explicit rejection of consent. There are no such lessons learned, in fact we are in the era of maximum failure on this regard. The lesson NEEDS to be learned but, again, too much escalation of commitment and egos and careers and so on. Ask the patients. Hell, we left a long public record, one that is completely ignored and dismissed with prejudice. One that you yourselves would have dismissed had you not been caught in this dystopian nightmare with the rest of us.

This is a nice sentiment and is basically exactly what the ME community has been begging for decades. But it is incredibly naive of the current context that leads to medicine, again, being "surprised" every time by something that has been happening every day for decades. It completely ignores the context of BPS/MUS/FND that makes this plan a non-starter without a massive reform of medicine that has to acknowledge massive widespread failure that destroyed millions of lives, knowingly, on purely ideological grounds.

This is a good recipe for solving this but the system can't do this right now. Not without massive changes. Not without recognizing that for all those good ideas, every last one of them, medicine is currently incapable of delivering and in fact has refused to do so aggressively for decades. Because medicine doesn't do that "no decision without us" thing. It's not a thing. It's how it should work, but the opposite of how it works right now. What this describes is what gets people discharged for being "non-compliant".

Context matters. There is huge context behind this, all of it is not acknowledged, let alone taken into consideration. That the obvious precedent of ME/CFS and other chronic illnesses isn't even acknowledged here does not inspire confidence, especially on the question of "lessons learned". Medicine doesn't learn lessons from patients, stubbornly so. The patients can tell you that, but they weren't even included in the list of stakeholders. Everything has to change. Literally everything.

This article is discussed further here:
BMJ letter from LongCovid doctors.
 
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BurnA said:
This could be the nail in the coffin for those BPS folk. Before it was a few pesky patients, afraid of a bit of exercise, now it could be thousands of people, many of whom work in healthcare.
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When I’m in a positive frame of mind about it this is what I hope, that trying to use their psychosomatic bs on this new group simply won’t wash.

when less positive the concern is there will be a blinkered attitude by all concerned Patients medics health professionals that Covid is somehow special and other and novel and unrelated to what has gone before. There are some notably a Paul Garner who seem unblinkered but i suspect not a majority.
 
chrisb said:
I shouldn't worry about Rachel Pope. She is not a medical doctor. She's a "prehistorian" - even if she does have trouble spelling the word.
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Well, she is going to be a co-author of a paper. She was also interviewed on LBC recently. So she may be influential.

Another co-author is @elisaperego78 who is often posting on Twitter criticising what people with ME/CFS are posting about long Covid. I get the impression she also wants to keep long Covid away from ME/CFS. She spoke at a meeting with the WHO in the last few days.
 
Treatment advice from Sweden's Occupational Therapists, based on the British Royal College of Occupational Therapists' advice.



Google Translate said:
3 important tips from Sweden's Occupational Therapists to people who are suffering from pronounced fatigue after covid-19:

1. Create daily routines - it can help the body recover.
2. Increase your daily activities step by step.
3. Prioritize not only "necessary activities" but also things you enjoy doing.

Download our folder with more tips and advice for peoplw who are suffereing from fatigue after covid-19 and who are taking care of themselves at home!

https://www.arbetsterapeuterna.se/n...drabbats-av-uttalad-troetthet-efter-covid-19/
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Tom Kindlon said:
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Hi @Tom Kindlon I would go further and say “no effective treatment exists”, because tweet implies there might be a non-curative but effective treatment for ME, which there isn’t.

I don’t care if ME researchers and clinicians discover I have to take 20 different pills and injections a day for the rest of my life to significantly improve my symptoms so I can be a functioning member of society again, I would sign up for that in a heartbeat.
 
leokitten said:
Hi @Tom Kindlon I would go further and say “no effective treatment exists”, because tweet implies there might be a non-curative but effective treatment for ME, which there isn’t.

I don’t care if ME researchers and clinicians discover I have to take 20 different pills and injections a day for the rest of my life to significantly improve my symptoms so I can be a functioning member of society again, I would sign up for that in a heartbeat.
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OK, I’ve replied to my tweet which many will also see
 
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