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

[rvallee]

Long COVID: let patients help define long-lasting COVID symptoms
The terminology for long-lasting COVID symptoms — and the definition of recovery — must incorporate patients’ perspectives.



https://www.nature.com/articles/d41586-020-02796-2

This was a pretty good editorial but although it started off well, pointing at the massive failure of how medicine has dealt with ME as a blueprint of what not to do, it presented the problem with a past tense, almost suggesting the distant past, not actually stating that this failure needs to be corrected and learned from because it is currently not only ongoing but planned to keep going with aggressiveness.

That's not how learning from failure works, you can't point at an ongoing failure as an example of failure without demanding this failure be fixed, so that lessons can be learned. How will any lessons be learned otherwise?!

Because no matter how big the Long Covid problem is, it is still a statistical blip to the much massive failure of ME, because of its length and the perfidy of how the failure was fabricated and bullied through into practice despite there being no basis for it. And yet Long Covid is a very large problem, it's just that the ME problem is that large and abominable.

I do very much appreciate this failure being pointed out in blunt terms, but not saying that it must be fixed is a massive failure in itself, basically the same failure, the one from which lessons need to be learned if we are to avoid making them again, because they are currently being made with massive enthusiasm, with plans to continue for decades.

 

[rvallee]

LC patients have been saying that for months, plainly admitting they stopped using the app because it didn't fit their symptoms and that it was annoying to manually enter the same thing day after day. They didn't listen and it affected the ability of their program to continue, distorting data for weeks, if not months.

Listen. To. Your. Patients. Stop interpreting what they say based on what you want to hear. LISTEN.

 

[Leila]

LongCovid with reference to "CFS" in GMA (04:03)

"We've seen other similar syndromes, we've seen it after Epstein Barr, we've seen it in Lyme, we've seen it in chronic fatigue syndrome, we've seen it in SARS

Theory is, it attacks the lining of the blood vessels and/or the autonomic nervous system"

(Edited to correct quotes)

 

[rvallee]

Mount Sinai’s Post-COVID Care Center For 'Long-Haulers' Slammed By Patient Demand

https://gothamist.com/news/mount-si...er-for-long-haulers-slammed-by-patient-demand

The Mount Sinai Health System’s new Center for Post-COVID Care has become an increasingly in-demand resource for so-called “long-haulers,” those who, for unexplained reasons, experience lingering health issues months after contracting COVID-19.

Because the Center for Post-COVID Care was established to conduct research on the potential long-term health outcomes of COVID-19 in addition to providing care, it has so far prioritized patients who have tested positive for COVID-19 or for antibodies, which can develop as part of the immune system’s response to the disease. But Chen acknowledges that it’s a flawed system and says he is working on getting appointments for people who were waitlisted by the Center because they lacked a positive test.

“Initially, what we were designed to do was take care of patients we knew had COVID-19, meaning they had a positive PCR test or had a positive antibody test, so we’re sure these are [COVID-19-related] symptoms and can enroll them in research,” Chen said. “But even from the beginning, we realized you have patients who didn’t get tested in New York and around the country and there are patients who may have had a not-so-good test because testing was not perfect.”

 

[rvallee]

Of course. I mean. Of course.

The argument here seems to be: people are paying attention to Long Covid and I don't like it. What's interesting is that it actually proves the point that "attention" is entirely worthless by itself.


The exploitation of Long Covid

https://www.spiked-online.com/2020/10/06/the-exploitation-of-long-covid/

This presentation of Long Covid is intended to be frightening. That is its purpose. Towards the end of the Institute for Global Change report, the authors actually state: ‘We recommend [Long Covid] be highlighted in government awareness campaigns. We believe doing so would help drive compliance with containment measures such as the use of masks.’ In other words, Long Covid performs a useful function – it makes Covid appear more threatening than people think it is, and therefore might scare people into ‘compliance’.

 

[Mij]

There's another risk our community are all too familiar with - the old if you really wanted to get well, you'd try everything. This leaves the community open for the predators and peddlers of woo. In hunting for recovery you can expend all your resources, physical & financial, and be left in worse health than when you started.

Britt Hermes, writer, scientist and a former naturopathic doctor, discusses the pseudoscience of naturopathy:

Naturopathy proponents commonly claim that medical professionals provide inadequate treatment to patients, which resonates with stories of patients describing feeling of being overlooked or belittled by physicians. In an effort to feel “heard”, some patients turn to naturopaths, who often advertise themselves as “different kinds of doctors”, ones that take time to listen to patients to find the “root cause” of disease. This marketing strategy is very effective.

 

[Shinygleamy]

Doctors with long COVID


Looks like doctors subject to the patient side of medically unexplained symptoms are not particularly impressed by the concept.

From the British Medical Association. This article basically debunks every single one of the tropes that had been pushed on us for decades. Interesting.

https://www.bma.org.uk/news-and-opinion/doctors-with-long-covid


At the very least I'm seeing growing recognition of POTS without the direct implication that it's clearly anxiety.






One small caveat here, though: this is precisely what empathy is not. With empathy, one does not have to live the experience to appreciate its features and gravity. Empathy is supposed to bridge that gap, not happen out of personal experience's hindsight. With more empathy in medicine, we wouldn't be in this mess. Without people lacking in empathy, a universal feature in the BPS/MUS/FND ideology, this could have been entirely avoided.

Absolutely correct about empathy. It's not i feel for you because my life is just like your life.

 

[Dolphin]

https://ijisrt.com/assets/upload/files/IJISRT20SEP144.pdf

Long Term Complications Associated with Covid-19 : A Review*
Anushka Joshi
Volume 5, Issue 9, September – 2020
International Journal of Innovative Science and Research Technology ISSN No:-2456-2165

IV. POST COVID-19 SYNDROME/ CHRONIC FATIGUE SYNDROME

Most of the people who recovered from covid-19 experience chronic fatigue. This kind of issue has been observed in case of various other epidemics too. The researchers found that more than 50% of their study sample experienced fatigue throughout their recovery .It is suggested that hyper inflammation and cytokine storm due to infection can contribute to such complications .[9]

Many of the covid-19 survivors have reported that though they have been tested negative for covid-19 but they do not feel completely healthy and are unable to get rid of the sickness and fatigue even after months of recovery.[10]

 

[NelliePledge]

Posts about the NHS England announcement about Long Covid clinics have been moved to this thread
https://www.s4me.info/threads/uk-nhs-england-online-tool-and-clinics-for-long-covid.15790/

 

[dave30th]

That was a really great editorial from Nature!!

Nice if they would have acknowledged their own role in promoting the Wessely paradigm, given his Nature-sponsored Maddox prize for courage in standing up to militant and dangerous ME patients.

 

[anniekim]

Of course. I mean. Of course.

The argument here seems to be: people are paying attention to Long Covid and I don't like it. What's interesting is that it actually proves the point that "attention" is entirely worthless by itself.


The exploitation of Long Covid

https://www.spiked-online.com/2020/10/06/the-exploitation-of-long-covid/

Spikedonline is very right wing/Libertarian (receives funds from Koch foundation) outfit and has a firm agenda. They will not want any message that the dangers of CoVid 19 are not only limited to death as they are anti restriction measures.

 

[Dolphin]

'Long Covid': Why are some people not recovering?

https://www.bbc.co.uk/news/health-54296223

Prof Strain told the BBC: "The theory I'm working on is a premature ageing of the small blood vessels that deliver oxygen and nutrients to the tissues." But he warned that until we figure out what is causing long Covid "it is difficult to figure out treatments."

"We've got no doubt long Covid exists," Prof David Strain, from the
University of Exeter, who is already seeing long-Covid patients at his
Chronic Fatigue Syndrome clinic, told the BBC.

I don't remember his name in connection with CFS before.

https://sanogenetics.com/land/covid-19/

We're also working with Dr David Strain, Senior Clinical Lecturer at the University of Exeter. David was the lead on the COVID ward for older adults at the Royal Devon & Exeter NHS Foundation Trust. David is investigating the links between Long Covid and Chronic Fatigue Syndrome, and how alterations in patient microvasculature in the brain, heart, and rest of the body may play a part in both conditions.

Sounds interesting

 

[anniekim]

People who have had chronic fatigue syndrome are more likely to have it again and the concern is that future infections may cause more flare-ups.

Regarding this quote above by Dr David Strain in the longcovid BBC article mentioned earlier on this thread, does anyone else read that as him portraying CFS as something people usually recover from although they may be prone to get it again? If so, I think that is v inaccurate and another indicator that a very mixed bag of patients are referred to the NHS CFS clinics.

Secondly, is he also saying here those who had CFS are more likely to get it again if they get CoVid 19? Sorry I found these inserted quotes hard to understand, although I appreciate someone pointed out they seem to be purposely oblique.

 

[anniekim]

I don't remember his name in connection with CFS before.

https://sanogenetics.com/land/covid-19/

Sounds interesting

I had not heard of him before. This link says he participates in the Exeter ‘chronic fatigue’ service.https://medicine.exeter.ac.uk/people/profile/index.php?web_id=David_Strain

I quickly googled the Exeter CFS clinic, itseems to follow the dreaded bps model following NICE guidelines.

https://northeast.devonformularygui.../pain-management/chronic-fatigue-service-rd-e

 

[Dolphin]

I don't remember his name in connection with CFS before.

https://sanogenetics.com/land/covid-19/

Sounds interesting

September 19 article:
https://www.dailymail.co.uk/health/article-8750657/Why-fit-healthy-women-risk-long-Covid.html

Another piece of the jigsaw comes, perhaps, from the link between Long Covid and chronic fatigue. Prof Spector's data shows that 98 per cent of those with extended symptoms suffer from fatigue.

Parallels can be drawn between conditions such as chronic fatigue syndrome (CFS) and ME, which both cause extreme tiredness, and Long Covid.

Many cases of CFS and ME emerge following viral infection. And they share similarities with autoimmune conditions in that they are most common in women and involve inflammation in the body.

Research will now investigate the links between Long Covid and CFS, and whether there are genetic similarities in those who develop either.

The study is being led by Dr David Strain, senior clinical lecturer at the University of Exeter and co-chairman of the British Medical Association's medical academic committee, who runs a CFS clinic.

'Looking at our referral patterns, more women are attending with symptoms of CFS they're attributing to having had Covid,' he says. 'But we don't know if they're just more likely to come forward than men, which is true of many other chronic health problems.'

Dr Strain suggests that coronavirus might affect the mitochondria – the powerhouse of cells that supplies them with energy.

And, crucially, this is more likely to impact women than men, since women have fewer mitochondria in their cells, and therefore have less in reserve when they are attacked.

 

[Tom Kindlon]

https://www.globenewswire.com/news-...MP-511-ME-CFS-Clinical-Trial-of-Ampligen.html

 

[Shinygleamy]

I had not heard of him before. This link says he participates in the Exeter ‘chronic fatigue’ service.https://medicine.exeter.ac.uk/people/profile/index.php?web_id=David_Strain

I quickly googled the Exeter CFS clinic, itseems to follow the dreaded bps model following NICE guidelines.
https://northeast.devonformularygui.../pain-management/chronic-fatigue-service-rd-e
https://northeast.devonformularygui.../pain-management/chronic-fatigue-service-rd-e

If Exeter had been doing more than the bps model they wouldn't be able to advertise it or they'd get shut down. Just like Julia Newton in Newcastle did.

 

[Forbin]

Wasn't it described already in the 1930's? So more like 90 years..

ETA: However the term "ME" arrived in the 1950's, didn't it? So 70 years, then..

True.

I suppose, though, that you might say that "CFS" is about 40 years old, because that nomenclature evolved out of U.S. outbreaks from the very early 80's that were originally thought to be EBV. The original article published in 1984, "Chronic Mononucleosis Syndrome" (in the Southern Medical Journal), had been looking at some patients who had become ill at least three years earlier.

I believe the idea that EBV was the specific cause was discounted several years later when it was discovered that most adults have antibodies to the virus.

Unfortunately, it seems as though the efforts to attribute ME/CFS to a single pathogen may have blinded earlier researchers to the possibility that the condition might be a rare but fairly uniform response to variety of triggers.

 

[Mithriel]

The Incline Village outbreak began with schoolchildren who had gone on a bus to a football match if I remember correctly so it was assumed it was EBV. The CDC sent brought in Stephen Strauss who was the leading proponent of long term EBV as a syndrome. He was very upset and angry when testing showed that not all of the patients had antibodies to EBV. He simply changed the criteria for long term EBV by leaving out having to be positive for EBV and used that as the guidelines for Chronic Fatigue Syndrome.

He was a horrible, misogynistic man and went round the US trivialising the disease.

The US researchers went their own way and never built on the expertise of the UK researchers (so problems with exercise were sidelined for 20 years for instance) and that combined with Wessely and co taking over and suppressing ME here meant we have just been catching up on what was known in the 1960s.

The BPS theories had to be disassociated from the epidemics because you can't suddenly get deconditioned and all the confusion caused worked in their interests as well.

 

[Mithriel]

And, crucially, this is more likely to impact women than men, since women have fewer mitochondria in their cells, and therefore have less in reserve when they are attacked.

Is this true? I have never heard of that before.