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

TIME: Have We Been Thinking About Long-Haul Coronavirus All Wrong?

A few years ago, Jaime Seltzer was helping coordinate research projects, grant applications and funding for a Stanford research group studying a condition called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Up to 2.5 million Americans, including Seltzer, have ME/CFS, and yet it felt like almost no one paid attention to her group’s research. “What is it going to take for researchers to take ME seriously?” she and her colleagues often wondered aloud.

The morbid answer, they hypothesized, was a pandemic. Since ME/CFS often follows viral infections, they feared it would take something as destructive as mass illness for the larger scientific community to take notice.

Unfortunately, this year they were proven right. As the COVID-19 pandemic presses on, doctors are increasingly worried about the significant subset of coronavirus patients—estimated to be somewhere around 10%—who are suffering symptoms like fatigue, brain fog and chronic pain for months on end. Many of them will soon fit the diagnostic criteria for ME/CFS, which is characterized by debilitating exhaustion lasting six months or longer. This flood of potential new ME/CFS patients has, just as Seltzer predicted, thrust her once little-known condition into the spotlight.

 

That's a really good article, also saying towards the end how long haulers often reject the idea of LC turning into ME (understandably so)

I wish though these articles drawing paralleles between LC and ME would unravel why it is pwME are being disbelieved, still & despite all the high profile research efforts (e.g. Stanford).

This isn't happening in a vacuum, no one is ever questioning what role BPS approaches play.

We are not "only" being not taken seriously & left with no therapy. We're actively being recommended harmful therapy. That's the biggest scandal in this illness.

 

Discussion on the BBC World Service "Science In Action" radio program here:
Covid-19 mortality (starts 12:16m)

Logically, therefore, though there was a mention of post-viral-fatigue syndrome, there was no mention of those dangerous pigeon-holes known as ME or CFS. Imerson's background is in health economics and health policy and it seems to me that they are trying to frame the situation according to what must be a pretty frightening economic outlook rather than according to the clinical facts.

 

I thought about the 4 syndromes and at first it made sense but they made a huge mistake and it's actually 3: they simply can't reconcile the fact that PVFS isn't just fatigue and so they made up a catch-all for all the ME stuff that isn't just fatigue but doesn't fit the picture of ICU from pneumonia or observable organ damage.

So they're both mostly right but also catastrophically wrong in a way that may set the whole thing up for failure. Very likely that path is meant to get shunted into the FND black hole. Fortunately things are more coherent on the US side so this will not have the chance to dominate as much but it figures that they'd screw this up precisely because they've been screwing up for decades and can't reconcile their delusional fantasies with reality. An ideologue will always discard reality when it conflicts with their delusions. Always. So yet again it does.

 

That's a great article. I'm just really looking forward to the moment when the disease is placed in its full context. The way it's typically framed suggests we're all OK and this will benefit us a bit, rather than literally be a life-saving process for millions, just as much in context as AIDS research efforts managed in turning over a death sentence into a manageable disease for most who have access to health care.

And so much more needs to be made of the fact that it was entirely predictable, that medicine completely falling on its face, still months after barely able to get a handle on what's going on at all, about something that was entirely predictable and has happened many times in the past. This article kind of sets up for this but doesn't really say it.

It's hard to accept that medicine has willfully and deliberately sacrificed tens of millions of lives for ideological delusions but this is what happened and it won't stop until people make it stop. People made those choices, they were not inevitable, and so people will have to make the choice to end this catastrophe or simply affirm that they are OK with it, that millions of lives are a price worth paying for the beautiful fantasy of conversion disorder.

 

These doctors got COVID-19, now they're suffering the serious, mysterious symptoms of 'long COVID'

https://www.abc.net.au/radionational/programs/sciencefriction/12776680

Considering that literally all the resources that have been helpful so far, advising to pace and rest, the opposite of what medicine has advised, have come from either the ME community or work that was done following relentless efforts from us, I'd say that the bolded sentence is already proven to be true. I don't think it's an exaggeration to say that the ME community (and chronic illness in general) has saved many Long Covid lives, compared to standard medical care.

The other factor is the fact that the community was able to rapidly organize, the very thing that has made possible the existence of an ME community and something that is vilified by our BPS overlords and anyone who believes in their crap. It is generally very ill-advised but this is one very rare occasion where it's actually necessary to ignore what medicine says (for now) and listen to the weird discriminated people who are vilified by medicine. This is very much not normal but that is almost entirely because what medicine has done to us is even more abnormal.

 

A Long Covid association has officially launched in France:

(Bit interpreted by me to make more sense)

https://twitter.com/user/status/1317138314764443649

 

https://twitter.com/user/status/1316541673841844225

https://twitter.com/user/status/1316543267207606272

https://twitter.com/user/status/1316545019726245890

https://twitter.com/user/status/1316546591814283272

https://twitter.com/user/status/1316548704334209028

 

Very M.E. in that you make a couple of mistakes at the beginning and you don't get away with it. It's too late and you regret it for a long time. It's brutal!

 

https://www.bioinformaticscro.com/podcast/chris-ponting/

https://twitter.com/user/status/1317196373045989377

 

BMJ - Counting long covid in children by Frances Simpson and Amali Lokugamage

When children presented with this new multisystem disorder in the first wave of the epidemic, some primary care or secondary care doctors were unaware of the full spectrum of disease manifestation; parents from the long covid social media groups have expressed upset that they encountered “medical gaslighting,” or a trivialisation of their parental concerns. Parents have voiced fear that they may be branded as “Munchhausens by proxy” parents in their persistence to ask for healthcare support for their children. There is a need for clinicians, at primary and secondary care levels to be alert and aware of the multisystem symptoms in children through rapid guidelines or continual professional development. There is also a need for parents to be aware that this may explain ongoing issues that may come and go in the aftermath of a covid-19 infection.

 

Thread:

https://twitter.com/user/status/1317145436789100547



Someone has provided Felicity Callard with contact details for Jane Colby and Tymes Trust and links for the Times article:

https://www.thetimes.co.uk/article/...-me-families-accused-of-child-abuse-np968v9dt

and the Jane Colby document: False Allegations of Child Abuse in Cases of Childhood ME

 

Maybe FS would be willing to hear about ME and the long road of medical gas-lighting we've endured. And to hear about young people like Karina Hansen. That could be very eye-opening.

 

I noticed this thread and wondered whether it would be useful to do a thread of public accounts of PEM and exertion intolerance. There have been plenty, easily hundreds with full identification, not random anonymous accounts. Because as in this example, this person did everything right according to the BPS model. Every. Single. Thing. All of it. And as a physical therapist to boot, there is hardly any excuse to excuse as not exercising right, despite the fact that it's been shown that trained specialists actually have worst outcomes.

In fact this is basically the exact opposite of the strawman they have built for us, the weird caricature invented by Wessely about someone facing life difficulties and just falling flat, losing the will to live, or whatever. This account is the polar opposite of that, did everything right according to the CBT/GET model and still crashed from exertion.

I wonder if they'd have weight on the NICE and Cochrane projects. At what point do anecdotes add up to significant data, especially when they essentially mirror the very model that is at dispute and ends up exactly as is typically reported by the patient community?

 

I have a chronic illness. I know what the COVID-19 long-haulers are going through

https://www.theglobeandmail.com/opi...ss-i-know-what-the-covid-19-long-haulers-are/

 

Someone has also given her the link to the Voices from the Shadows film and the name of Dr Nigel Speight, and Tymes Trust has responded to her.

I've given her the link for the 1999 BBC Panorama transcript, as an example of how long this has been going on for:

http://news.bbc.co.uk/1/hi/programmes/panorama/archive/506549.stm

Sick and Tired
Monday 8 November 1999
Reporter Matthew Hill

Edited to add: Also given FC a link for Valerie Eliot Smith's reports documenting the Karina Hansen case, in Denmark, and the link for the website for the late Sophia Mirza.

 

It was surprising to see such apparent surprise expressed. Was it not known that such things went on with the approval of those from the Maudsley and KCL?

 

I guess most people who heard about those complaints assumed they were legitimate cases and so thought nothing of it. It's basically expected that if there is such a thing as MbP that the parents would complain. Of course if it's not legitimate the same would happen so it's not really a good idea to have your positive cases look exactly like your negative ones with nothing else to check for but what the hell do I know?

It doesn't seem like the thinking allows for there to be mistakes. Unfortunately there is mostly mistakes. Oops.