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

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Kalliope said:
So good to see this important issue covered in TIME. Excellent advocacy once again from Wilhelmina Jenkins!

TIME: Black Women Fighting For Recognition as Long COVID Patients

Quotes:
It took five years of chronic pain, nausea, fuzzy thoughts and a cruel mixture of fatigue and insomnia for Wilhelmina Jenkins to be diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). But even after she received that diagnosis, in 1988, she faced her fair share of doubters—not because her symptoms didn’t meet the bar for diagnosis, but because she is Black.

At that time, researchers mistakenly thought ME/CFS, a syndrome that sometimes follows a viral illness and leads to long-term pain, fatigue and other symptoms that can last decades, primarily affected upper-class white women. It was pejoratively labeled “yuppie flu,” and many doctors believed it to be psychosomatic.

....

When COVID-19 hit last year, and case clusters began popping up in Black communities, Jenkins, now 71, braced herself for another fight. She knew that, since ME/CFS can follow viral illnesses, COVID-19 could be a mass trigger. She also knew that, particularly in communities of color, many patients would have no idea why they weren’t getting better after a couple weeks. “I knew they were not going to be reached,” she says.

She ended up being right on both counts.
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Time has shared the article on social media. They have 12 million followers on FB and 8 million followers on Twitter, so do give a thumbs up and retweet those who can :-)


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Science Friday What Does The Future Look Like For COVID-19 Long-Haulers?
Interview with Walter Koroshetz from NIH and David Putrino from Mount Sinai. Duration 37 minutes.

Koroshetz mentions ME/CFS a couple of times. That Long Covid is an opportunity to learn more about ME as well.
As far as I understand there will be a transcript of the interview within a few days, so will share quotes concerning ME then.

All in all a good interview. David Putrino talks about rehabilitation in Long Covid, and seems to be approaching it with caution and with focus on dysautonomia.
 
(Pay-walled)
No mention of ME/CFS or even I think post viral illness

Irish hospital doctors on long Covid: Athletic people are ‘inordinately affected’
https://www.irishtimes.com/life-and...ic-people-are-inordinately-affected-1.4530174

The title gave me hope but unfortunately this is what is said on that:
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His impression is that people who had a particularly high level of
physical ability, such as sports people or marathon runners, seem to
be “inordinately affected”. This may be because they have very high
expectation of their health, having never been ill before.

That is not dissimilar to findings of persisting symptoms among
patients with other infectious diseases, says de Barra.

“Type A personality predisposes them, either because they have those
expectations of their functionality and they really find it hard that
they were sick and it’s going to take time to get better, or the
psychological overlap that might occur with that.”
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Also a low level of functioning as measured by the 6-minute walk test
is put down to deconditioning:

"Part of the assessment at the clinic is a six-minute walk test,
during which a patient’s heart rate and oxygen are checked. This has
revealed a “profound” level of deconditioning.

“We need to think about rehabilitation very early with these patients.
I think that is what we learnt from the first wave.”
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A year in and the fact that this nonsense is still believed is such incredible failure. This is way past ordinary failure, it frankly stretches disbelief that anyone can be so clueless about their job. Quacks clearly echo best in echo chambers.

Seriously if acute medicine were this bad death rates would have actually increased. The feedback mechanism of outpatient care is completely broken.
 
Tom Kindlon said:
“Type A personality predisposes them, either because they have those
expectations of their functionality and they really find it hard that
they were sick and it’s going to take time to get better, or the
psychological overlap that might occur with that.”
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I like it how type A personality is a predisposing factor, with too high expectations of their own recovery time. But also another predisposing factor is the type who often visits the doctor, thinks a lot about their symptoms and has apparently too low expectations of their recovery. I always wonder what personality type is NOT a predisposing factor because you can put an awful lot of people in these two categories if you really want to.
 
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Wyva said:
I like it how type A personality is a predisposing factor, with too high expectations of their own recovery time. But also another predisposing factor is the type who often visits the doctor, thinks a lot about their symptoms and has apparently too low expectations of their recovery. I always wonder what personality type is NOT a predisposing factor because you can put an awful lot of people in these two categories if you really want to.
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"You want to recover too much and too fast and that's why you didn't recover, you believe in yourself too much"
"You believed you couldn't recover and that's why you didn't recover, social media scared you and now you're all somatising and stuff or whatever"

It's basically choose your truth. Nothing matters, accountability doesn't exist so you get stuff like this. You have this because you're too tall. "But I'm very short." Well you have this because you're too short. Happy now? You got an explanation.

I just saw passing an abstract from a Wessely paper about how to bring up conversion disorder to patients, balancing the risk between losing the patient's trust and telling them the truth, clearly unaware that there is no quicker way to lose someone's trust by blatantly lying to their face. Of course they are Dunning-Krugerly unaware that they are lying, which only reinforces this junk.

When physicians tell these things to patients they genuinely have no idea that they instantly lose credibility. But losing credibility means nothing to them, it's statutory credibility, it doesn't affect them at all, never gets reported, let alone recorded. Patients just give up, reinforcing the misbehavior. Then studies trawl from records filled with misinterpretation and it goes on for generations, unchanged.
 
Those damn lazy perfectionist neurotic type A personalities, always on the go while constantly stopping to monitor symptoms, never thinking of themselves other than being obsessed with their little person (ME ME ME!).

Honestly I'm pretty sure someone fitting all the criteria variously thrown out carelessly by BPS fanatics would probably end up in a psychiatric facility and it wouldn't even be wrong. They don't just create a strawman, it's basically the whole Wizard of Oz cast embodied in the same person. They actually created strawpeople, plural, who actually are the same person.
 
The Guardian: As the UK inches towards normality, those with long Covid must not be forgotten

From the vaccine rollout to the reopening of pubs, this stage of the pandemic could be characterised as the hope of a return to normal. I can’t help but think of one group who are struggling with that: the estimated 1.1 million people in the UK who, according to the ONS, have been suffering from long Covid recently.

Long Covid is defined as experiencing symptoms four weeks or more after first getting coronavirus. It’s important to stress that not everyone who experiences long Covid will go on to have long-term chronic illness, but almost 700,000 people said that their symptoms were adversely affecting their day-to-day activities, and 70,000 people have had it for at least a year.

The condition is also a wide umbrella term: the most common symptoms are fatigue, breathlessness and pain, but patients report others including partial hearing loss and numbness. And yet the message of the ONS figures is dauntingly clear: hundreds of thousands of people in this country are experiencing debilitating illness, all at once, with very little idea how to treat it, or when or if it will end.
....
Much of the commentary around long Covid suggests this is an entirely new phenomenon, but the truth is millions of people have suffered from similar chronic illnesses for decades with little support. As the conversation around long Covid grows, we must ensure any help that comes is offered to those with all chronic illnesses. This is about attitudes as well as resources. The National Institute for Health and Care Excellence’s recent announcement that people with chronic pain that has no known cause should not be prescribed painkillers, is an insight into how patients with invisible or undiagnosed conditions are too often disbelieved and denied proper treatment.
 
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Grigor said:
Sadly this is paywalled but I would really love to read this. Does anyone have access the text?
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Sorry Grigor, normally they let you read a few articles for free every week, but this one seems to be subscriber only.
Here are some excerpts :

However, the “good thing is most people we saw at three months had recovered very well”, said Hurley. But they did see others who were readmitted to the hospital with continuing lung problems, breathing problems and about five per cent were diagnosed in the hospital or afterwards with blood clotting in the lung.

Fatigue is a common element for people who had Covid in the community, Hurley says.

“Shortness of breath is a big problem for patients, even young patients.”

Part of the assessment at the clinic is a six-minute walk test, during which a patient’s heart rate and oxygen are checked. This has revealed a “profound” level of deconditioning.

Use of an extensive questionnaire at the Beaumont clinic found that 30 to 40 per cent of those attending had mental health issues, such as anxiety and depression. While this could be true for anybody spending a long spell in hospital, “it is a big number of people” according to Hurley.

Rather than having patients “being referred here, there and everywhere” through lots of specialities, as is currently happening, says de Barra, the health system needs a framework whereby they will be “funnelled into a truly multidisciplinary clinic”.

His impression is that people who had a particularly high level of physical ability, such as sports people or marathon runners, seem to be “inordinately affected”. This may be because they have very high expectation of their health, having never been ill before.
That is not dissimilar to findings of persisting symptoms among patients with other infectious diseases, says de Barra.

“Type A personality predisposes them, either because they have those expectations of their functionality and they really find it hard that they were sick and it’s going to take time to get better, or the psychological overlap that might occur with that.”

A mismatch between the severity of symptoms and the findings of clinical investigations is the characteristic feature of long Covid, says Dr Liam Townsend, a specialist registrar in infectious diseases at St James’s Hospital and research fellow at Trinity College Dublin.

“If you were treating a computer you would say they’re fine, as their results look all right but the patient in front of you actually isn’t. That makes it quite difficult even from a triaging perspective.”
“We will need a truly multidisciplinary approach,” he says, including physio and occupational therapy and clinical psychology. He refers to a recent UK study that found depression and post traumatic stress disorder were very common and again this was not related to severity of infection.

Mention of clinical psychology might make patients think the medics believe it’s all in their head, he says.

“But no that’s not the case, there are so many factors.”
“There is no good screening tool; it is very much based on functional performance and subjective health.”

“There is nothing I can actually give these patients except listen and reassure that this is the trajectory.”

Investigations are done to make sure they’re not missing anything, says Townsend, adding: “We are all still slowly learning”.
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Just been listening to BBC radio 2 discussing long-covid; Strain was interviewed.
Really annoying that no mention of ME; Jeremy Vine said, it reminded him of Lyme disease.
Again framing it as a 'new' disease, yet using all the ME terms
Particularly poignant, two people talking about kids with it, one also diagnosed with an eating disorder, (see the new thread on Children with v severe ME and malnutrition).
 
Andy said:
millions of people have suffered from similar chronic illnesses for decades with little support
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It's more the active and hostile opposition than lack of support, but they compound. If only all we suffered is lack of support, things wouldn't have been so bad. The lies. The lies! So many lies. And they're mostly not even credible, to add more insult.
 
Tomorrow: BMJ webinar: Post-covid conditions (‘Long covid’ and other sequelae of covid disease)
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Code: 
https://twitter.com/bmj_latest/status/1380830468816392194

AGENDA

4.00 Welcome Fi Godlee (The BMJ)

MC Phil Hammond (Private Eye)

4.05 ‘What is 'long covid'/ post-covid?
(Chair: George Davey Smith, University of Bristol)
- Elaine Maxwell (NIHR)
- Jo House (University of Bristol) on patient perspectives
- Laura Spinney (science journalist and author) on the longterm health effects of 1918 ('Spanish@ flu

4.25 International Experience: What and where are the best data?
(Chair: Fi Godlee BMJ)
- Ben Humberstone and Daniel Ayoubkhani (ONS) : UK
- Simone Benatti : Italy
(see also Maxime Taquet in the next session)

4.50 Prognosis/available treatments and rehabilitation
(Chair: Allyson Pollock, Newcastle University)
- Melissa Heightman (UCL) on clinician service development
- Maxime Taquet (Oxford University) on the US data
- Margaret McCartney (GP) and Richard Byng (GP) on the primary care perspective
- Liz Whittaker (Imperial) on children and the CLOCK study
- Rob Barker Davis (British Army) on the value of exercise

5.45 Discussion and questions (chair: Phil Hammond)
-All panelists

6.15 Close
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I like this thread. It's a good thread. It says a lot of important things about how words can be misleading, or misinterpreted. Sometimes on purpose, as we know. It's also significant in the idea of patients being "poor historians", which is an absurd position considering patients are the primary source and physicians, or researchers, are the actual poor historians. Or historians, good or bad. Too often bad.

Nevertheless, patients actually report things quite well, it just gets massively misinterpreted by people with an agenda, and by others who just don't know the actual meaning beneath those words. Because words matter, they have power, and that power cuts both ways, it can be used for good or bad, but it will be used by someone, someone who may not have any clue what they are talking about when they used some words.

 
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