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

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Julia Newton on a zoom call talking about fatigue in relation to Covid. First in a series.. I've not watched it but noticed Vincent Dreary is also in the video, who I think was in some trudie chalder videos, or has done some other worrying cbt ones. Will check.

 
"Many clients are, to put it at its most stark, getting money to be ill-from the state or from private insurance".

Presumably if these people are clients his duty of care is to them and not the state or private insurance companies. It is not entirely clear that he is aware of such niceties.

If one is receiving money because one is ill, is one "getting money to be ill"?

What an ignorant prat.

Thanks for bringing this to our attention.
 
This is a discussion framed within the American health care system but for the most part the same issues exist everywhere, are not unique or even particular to the US, they are built-in to medicine itself and encouraged by the ableist culture of medicine.


Our healthcare system is not remotely ready for 'post-Covid' America

https://www.theguardian.com/commentisfree/2020/aug/14/coronavirus-covid-america-healthcare

Because Morton does not have health insurance, and therefore no primary care physician, she never received a positive Covid-19 diagnosis because she could not get tested. When she fell ill in March, tests were scarce. Her one interaction with the hospital was after her so-called recovery, when her joint pain and hypertension became so acute she couldn’t even walk three blocks to the emergency room. She says she was treated by the nurses as a “drug seeker” exaggerating her symptoms.
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This is universal to medicine, the same problem is rampant in every country and every health care system.
Taking care of the long-haulers, the socially isolated, those recovering from surgical intervention, and exhausted caretakers is going to require a radical re-imagining of healthcare in America.
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The issue is deeper than just health insurance and affordability, though. The symptoms that many self-identified Covid-19 long-haulers are reporting are the kinds of chronic conditions that American medicine is least adept at managing. The two most debilitating symptoms that long-hauler Facebook groups report are headaches and fatigue, or “brain fog”. Morton refers to her headaches as “zombie-aches,” as something “gnawing away at my brain”. She’s had migraines in the past, but this feels different and more intense.
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Not a single country does this right, no country actually manages disability correctly, even less so for "invisible to current technology" chronic illnesses. The failure exists with the very system of medicine. Everything has to be rebuilt from the ground up, it directly conflicts with decades of appeal to ignorance and magical thinking in refusing to deal with chronic illness.
In 2005, Paula Kamen published All In My Head: An Epic Quest to Cure an Unrelenting, Totally Unreasonable, and Only Slightly Enlightening Headache, her account of a headache that began when she was 24 and has yet to end. In her accounting, for years doctors dismissed and misdiagnosed her, prescribed highly addictive medication with no plan for managing her reliance on these pills, accused her of exaggerating pain, and switched treatment plans seemingly at random. Her headache remains.
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Kamen is not alone. In a profit-driven healthcare system, doctors are encouraged to find ways to speed up interactions, prescribe certain medications over others, and ignore social issues such as financial worries, debt, isolation and alienation, all which have been shown to have direct impact on health. Many who enter the American health system seeking care are turned away, mocked, misdiagnosed, or presented with treatment plans that they can’t afford. Women are less likely to be believed by their doctors to be accurately describing their symptoms or pain levels than men. Black patients are less likely to be believed than white patients. Patients without health insurance or means for payment are often unable to receive care outside of emergency room visits, meaning their illnesses and disorders only receive attention when they are in crisis.
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The Canadian health care system is not-for-profit yet features all of those, except instead of being unaffordable they are simply non-existent.
How many? No one seems to be counting these patients so far. Listed as “recovered” on official data reports, the suffering of Covid-19 patients is rendered invisible by hospitals and governments. Long-haulers have started to congregate online to offer each other companionship and information for self-treatment of their symptoms. The group Survivor Corps already has over 80,000 members.
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Not a single country does that, no one has any idea about long-haulers because medicine is built to explicitly dismiss "those patients".
 
I would prefer a decent job with the " benefits" that comes from this.

Not to exist in a stigmatised minority, fighting for enough to survive on , and having to counter a narrative of disbelief.

Rather than " wife swap" , perhaps we should have " shrink/ therapist/ medic swap, with the necessary props to ensure sleep deprivation , chronic pain , movement limited etc complete with before and after questionnaires

ETA, I so not have ME myself so am generalizing a bit.apologies if any offence caused
 
Adam pwme said:
Julia Newton on a zoom call talking about fatigue in relation to Covid. First in a series.. I've not watched it but noticed Vincent Dreary is also in the video, who I think was in some trudie chalder videos, or has done some other worrying cbt ones. Will check.

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Seems very generic and psychologically framed. It recognizes the need for pacing but also advises graded activity, whatever that means. At least it recognizes some of the co-morbidities like dysautonomia.

TL;DW: ¯\_(ツ)_/¯. Kind of meta because I didn't actually watch it, but there are slides and they are meh. Could be much worse, should be better.

Let's do actual (well-funded and unbiased, it must be specified) science and know more before we start telling people about things we don't know, OK?
 
Trish said:
The Orlando Magic are hoping follow-up tests outside the NBA bubble can help explain why center Mo Bamba had difficulty ramping up to game-level fitness after contracting COVID-19.
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Sorry, @Jaybee00, you've lost me. I can't access the link and have no idea what the section quoted means.
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It’s about an NBA basketball player, Mo Bamba. The bubble referred to is a sort of collective isolation in which NBA teams are playing to avoid infection from the general public.
 
chrisb said:
Deary in the second of those videos. At least, he is not seen to say it, but it is written down, purporting to be written by him
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The Deary quote ("Many clients are, to put it at its most stark, getting money to be ill - from the state or from private insurance.") is from a KCL page archived here: https://web.archive.org/web/20110817112210/http://www.kcl.ac.uk:80/projects/cfs/health/

There's earlier stuff from the KCL service here: http://web.archive.org/web/20000512000433/http://www.smd.kcl.ac.uk/kcsmd/cfs/cfstitle.htm
 
I don't think links to all three of the videos from the Newton/Deary group were posted:

1)

Lots of pointless talk of recovery, while they also acknowledge that they don't know much about the underlying processes of post-covid fatigue or how to best treat it (in a way that implies they're better informed about ME/CFS). They sure love using the word recovery. In the introduction they emphasise that they're not recommending GET, which people with ME/CFS can have problems with (even though it goes on to sound a lot like GET). The introducer's program is RICOVR.

2)

Lots of talk about boom and bust from the OT, without explaining that there's no good evidence 'boom and bust behaviour' is a particular problem amongst patients suffering chronic fatigue or plays a role in worsening their health (and some evidence that CFS patients have no more fluctuations in activity than healthy controls). She seems to think a lot of her patients struggle to understand basic parts of life, like what 'resting' is. She talks about very gradually grading up activity in 10-20% increments.

3)

Deary talks about how he helps patients with all the social problems that can come from a health condition like CFS, seemingly without any concern about the role he and his colleagues played in creating and worsening many of these problems. This is, predictably, the worst of the videos. Lots of 'caring' talk about encouraging people to be kind to themselves, and describing the sorts of basic problems he seems to think patients struggle with without him.

They all seem pretty bad to me, and a reminder that if GET and the deconditioning model disappear then all the problems we've faced are likely to continue.

edit: Just saw two more videos that I'd previously missed:



 
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More than two decades ago there was a lot of interest in very short RNaseL (37kDa) in ME, cleaved from the regular molecule. It isn't much discussed now, but at the time it was speculated that it might be part of an antiviral mechanism, and that ME patients might be more resistant to viral attack. More recently we have a newer claim about something in the blood that might do the same thing.

Back then we were talking about individual resistance. I wonder if we should be considering population resistance? Is ME a conserved evolutionary response, something with a large advantage to the population even if individuals suffer? If a major viral pandemic results in huge numbers of people with elevated viral defences then the population benefits. The sick still suffer though. In this scenario some of the long term damage is not the direct viral damage, though it can indeed damage organs, but the immunological and associated metabolic changes that have additional impact.

This is only speculation, but its something I have been thinking about.
 
We have people who were not hospitalised developing longcovid symptoms so at the beginning of the infection they had the sort of illness that people have had over the years with other corona viruses.

Now this particular virus is new but the others have been circulating for years. Is there something very different about this one so that it leads to long term ill health or have other so called mild coronaviruses been the cause of many of the MUS that are getting fobbed off as psychologically induced?
 
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