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

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.

 

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.

 

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)

https://www.youtube.com/watch?v=iu_Gs7N4lGk

 

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

 

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/

 

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

 

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

 

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

 

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.

 

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.

 

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

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

Sounds interesting

 

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.

 

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

 

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

 

https://www.globenewswire.com/news-...MP-511-ME-CFS-Clinical-Trial-of-Ampligen.html
https://twitter.com/user/status/1314020727096565762

 

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.

 

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.

 

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.

 

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