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

[Kalliope]

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.

 

[Leila]

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.

 

[Colin]

NIHR review:
Living with Covid19
Published on 15 October 2020
doi: 10.3310/themedreview_41169
A dynamic review of the evidence around ongoing Covid19 symptoms (often called Long Covid).
https://evidence.nihr.ac.uk/themedreview/living-with-covid19/

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

And, as we said, it seems that some people may experience multiple of these syndromes so, again, it's sort of dangerous to use neat pigeon-holes and one of the things we are arguing for is that, to begin with, we sort of keep things broad before you start to narrow down and say, ah, it's a this or it's a that.

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.

 

[Sean]

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.

These people are still trying to ignore the fundamental fact that the virus sets the rules, they are very hard and unforgiving rules, and all we humans can do is learn those rules and stick to them like limpets.

Normal life is over until we have a good vaccine, which isn't going to be anytime soon. Best case is maybe 12 months before it is widely available, if everything goes well with its development and testing, and then its mass manufacture and deployment.

 

[rvallee]

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.

 

[rvallee]

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 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.

 

[rvallee]

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

Three accomplished doctors share their visceral personal experiences of 'long COVID'.

Most likely infected with coronavirus early in the pandemic, months on they're each grappling with bizarre and disabling symptoms.

They've joined thousands across the world who are finding solidarity on social media and via virtual support groups.

And, it seems Long COVID doesn’t discriminate. Healthy people. Young people. Those who apparently had a mild case of COVID-19.

Every system in our bodies can be affected.

Could people living with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME) have something to offer those struggling with long COVID?

Are we facing another pandemic...this one silent, confusing, and harder to diagnose?

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.

 

[rvallee]

A Long Covid association has officially launched in France:

(Bit interpreted by me to make more sense)

Official launch of the National Association @apresj20 Covid Long France Association [thread] 1- To #federalize and #inform on the disease #LongCovid in collaboration with researchers / doctors, and provide #support to the sick.

 

[Dolphin]

 

[Shinygleamy]

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!

 

[Andy]

In this episode, Grant sits down with Chris Ponting, chair of medical bioinformatics at the University of Edinburgh. They talk about myalgic encephalomyelitis (ME) and potential parallels to COVID-19 “long-haulers”, CRISPR, and ecological disaster. (Recorded on Sept 25, 2020)

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

 

[Kalliope]

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.

 

[Andy]

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

Grant: And are there any countries that have been ahead of others on looking into this or has it been very well neglected across the board?

Chris: So it’s neglected a disease across the world. There are many countries where it’s not recognized at all by health professionals. And there are many health professionals across the world who think of people with it, with ME, as malingerers or who make up their disorder for whatever reason. It is the most devastating of diseases. In terms of quality of life, it’s so much worse than almost everything, including many cancers and multiple sclerosis, et cetera. Why anyone anywhere would make up such a disorder. I just don’t know. It’s almost Victorian in our approach to this disease in the sense that when we look back on this, maybe in 10 to 50 years time, we will understand what it was. And think “why on earth did we overlook it and disbelieve all of these people for so many years.”

Grant: So I guess this feeds into another question, which is what do you think we need to do differently in biomedical science? And there are probably many answers to this, but.

Chris: So one thing is we need to listen. If we’re studying a disease, then the person with the disease is often the expert on it. They have lived the experience of the disease. If they say that it fluctuates in different symptoms, that’s what it is. So listening and acting upon the experiences of people. And it’s not just their lived experience, but also they’ve become experts in the literature. They often, in my experience coming in from the outside has been, many people with ME, despite the fact that they are fatigued and they have post exertional malaise, and often can’t do things even things like brushing their teeth, but they do get involved and read the literature and are experts in it. And so I’ve often gone to my friend or others of people with ME and asked their advice as to what we should do scientifically.

 

[Dx Revision Watch]

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:




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

 

[Snowdrop]

Frances Simpson is a lecturer in Psychology and Counselling at Coventry University (SC.) She is also a sufferer of Long Covid and a founder member of the campaign group LongCovidSOS.

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.

 

[rvallee]

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?

 

[rvallee]

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/

This conundrum is no coincidence – the disease has a myriad of factors working against it. It isn’t taught in medical schools. Around 75 per cent of people with ME are women, and it is no secret that women’s chronic pain has historically been ignored and denied. Although ME was recognized by the World Health Organization as a disease in 1969, in the mid-1980s it was coined chronic fatigue syndrome, a name that wildly underrepresented its severity and contributed to a cultural ignorance that has led to a dearth of funding. Without enough research, it’s hard to even know how many people suffer from ME. And without reliable statistics, no one really understands just how debilitating and common ME is.

Not only are these long-haulers' physical symptoms and demographics similar to those of ME – it’s young, healthy women who most often get the disease – but so is their experience navigating a health care system that so often ignores and belittles those who they cannot categorize.


Half of the respondents in a study led by long-haulers themselves reported “conflicting outlooks and advice from different medical staff,” while more than 20 per cent reported having been “not supported” at all. They were told to stay home, and sometimes denied resources such as prescriptions and further testing.

Postviral illnesses are more common than you might think. After the SARS outbreak in the early 2000s, one study found that 27 per cent of 233 survivors met the criteria for ME several years later. SARS infected just 8,000 people worldwide. COVID-19, so far, has infected 38 million.

We don’t have to do the math to know that we will see a wave of chronic illness in the coming years. Some people will eventually recover. Some people will be diagnosed with ME, while others will be diagnosed with other chronic conditions. Others will be misdiagnosed. Some will struggle for years, even a lifetime, without a diagnosis at all.

 

[Dx Revision Watch]

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.

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.

 

[chrisb]

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?

 

[rvallee]

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 Mudsley 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.