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

Inside Sources: Psychiatrist Would Abandon Research on Long COVID and Chronic Fatigue Syndrome by Llewellyn King

- The knowledge that the National Institutes of Health will be spending $1.15 billion on Long COVID was music to the ears of people who suffer from Myalgic Encephalomyelitis, also called Chronic Fatigue Syndrome, and often linked in the acronym ME/CFS.

Long COVID is affecting people who had the virus, had seemingly recovered from it, but are having symptoms which appear to be similar or identical to those afflicting ME/CFS sufferers.

For decades, funding for research on ME/CFS – which I have called “a disease hidden in plain sight” — has been starved at the NIH. Much of the research has been funded privately, often by small contributions from the patient community. Now, concomitantly, there may be some real money and greater hope.

 

Practical problems in primary care teams - Evening CPD sessions for primary care practitioners

Wed, 21 April 2021

https://www.eventbrite.co.uk/e/practical-problems-in-primary-care-long-covid-tickets-148772547695

Prof Chew-Graham will present the findings of a qualitative study completed in the summer of 2020 which explored the emergence of 'Long-COVID'. Interviews with 30 people living with long-COVID were conducted, and the analysis contributed to the development of the RCGP learning module on Long-COVID, the RCGP 'Top Ten Tips', and were cited in the NICE guidance on the management of post-acute COVID.​

 

For me I see a problem even if Peter White is correct in that some people have come round to considering views of ME outside the BPS bubble.

We still have the problem of research. As we've seen recently the BPS have been stepping up their game in order to try and expunge their horrible track record of producing papers who's only merit would be in their retraction. They have started to pretend to use biology to 'support' their hare-brained theories. But with a new appreciation for Post Viral Illness and how that might become a long-term chronic illness -- how do they propose to proceed?

The bar for what has been considered good quality or even excellent research has been low enough to roll across in a wheel chair. Along with saying words that sound like a concession to reality we need the deeds that match. The people who make funding decisions and the people overseeing the protocols all the way to reviewers need to first learn what kind of research methods might truly lead to a robust finding that can be counted on to have a high probability of reflecting reality (I'm sure there are better ways to state this). I'm not convinced yet of their commitment in this regard.

Until then, hope springs eternal . . .

 

https://twitter.com/user/status/1383363956538970124

 

https://twitter.com/user/status/1383517720969310210

 

Viral latency. Interesting re Ebola tweet.
Really viral latency bring suggested by some longhaulers
https://twitter.com/user/status/1370400506988822531

 

https://twitter.com/user/status/1382989787045494791

 

https://twitter.com/user/status/1384127010339921923

 

Alcohol intolerance is common in ME
https://twitter.com/user/status/1383724329226051585

 

Op-Ed: How long-haul COVID-19 could offer clues for treating other puzzling chronic illnesses

https://www.latimes.com/opinion/story/2021-04-18/long-haul-covid-19-symptoms-chronic-illnesses

Today, millions of people struggle with chronic conditions that may also be triggered by immune system abnormalities, whose origins are often unknown — including rheumatoid arthritis, multiple sclerosis, lupus, Lyme disease, chronic fatigue syndrome, Guillain-Barre syndrome and inflammatory bowel disease. Comprehensive immune analyses will almost certainly provide fundamental new insights into many of these diseases.

Unfortunately, most people with long-haul symptoms share at least one prominent experience: the difficulty in getting their conditions recognized, diagnosed and effectively treated. Physicians and insurers often deny patients’ reality and experiences when they present complex and seemingly unrelated symptoms and treat their conditions as psychosomatic. Not only does this demean the patient, but it exacerbates the worry, confusion and stress of patients and families dealing with significant mental and physical health challenges. This also delays treatment, adds to overall costs and diminishes productivity and quality of life.​

---

Leroy Hood, a member of the National Academies of Sciences, Engineering and Medicine, is a professor and co-founder of the Institute for Systems Biology and senior vice president and chief science officer of the Providence St. Joseph Health system.​

 

The article is paywalled, so don't know if ME is mentioned. Got a bit worried when the title mentions singing..

The Telegraph: The hunt for a long Covid cure - from vaccines to antihistamines and singing

 

Not much going on, but it's a fair article. The singing is mentioned because of a respiratory unit probably ascribing natural improvement to whatever they are doing, as is tradition. It mostly lists a bunch of things to show how a lot of things are being tried but nothing effective has yet come out of it. Although those things are just throwing stuff at the wall so I'm not sure it really counts, frankly. Pragmatic rehabilitation is not a thing, medical professionals don't have magical healing hands, sorry BPS folks.

Somehow the safe and effective treatments developed by our BPS overlords are not considered safe and effective, despite their best attempts at marketing it as such. How odd and unexpected.

 

Thank you so much for a summary of the article, @rvallee !

 

Long COVID Dramatically Increases Cases Of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
On 5th Annual Advocacy Week, bipartisan legislators set to make major funding announcement.

Solve press release

https://www.prnewswire.com/news-rel...elitischronic-fatigue-syndrome-301271828.html

 

We don't seem to have a thread for south africa so posting this here:
'Long Covid is a post-viral fatigue syndrome also seen after swine and bird flu'

https://www.capetalk.co.za/articles/411762/long-covid-is-a-post-viral-fatigue-syndrome-also-seen-after-swine-and-bird-flu

(A thread has now been created for news from South Africa: News from South Africa)

 

Some French Long Covid patients are being sent to what seems to be intensive exercise rehabilitation programs: 30 mornings in a row. Doesn't appear to be for LC, as the cardiologist seemed to be either unaware or indifferent to it, probably just standard "you're just tired" approach. Or maybe it is the intent and they are simply lying, which at this point wouldn't surprise me, it's clearly common practice (and why it needs to be explicitly banned).

30 days in a row. Absolutely insane the harm this will do. I don't know who pays for that but it can't be cheap, especially so that it pretty much guarantees serious deterioration in many. That's like paying to lose more money, and people. Horrible.

https://twitter.com/user/status/1384459178324893696

 

Long COVID’s long R&D agenda

"As researchers work to understand the biology and epidemiology of post-acute COVID-19, a pioneering platform trial is now testing treatments to try to address the long-term complications of infection in previously hospitalized individuals."

https://www.nature.com/articles/d41573-021-00069-9

 

It mentions ME towards the end:

With a research agenda in place, moreover, patients infected with other viruses may stand to benefit. The coronaviruses that caused MERS and SARS, as well as the influenza virus and other viral pathogens, have all been implicated with longer-term sequelae. “A post-viral syndrome phenomenon, anecdotally, is well recognized. There just hasn’t been much of a spotlight on it,” says Haroon. The CDC lists viral infections as a hypothesized cause of myalgic encephalomyelitis/chronic fatigue syndrome, which shares some characteristics with long COVID.

As investigators gain insight into appropriate control groups, background symptom rates, clinical trial designs and the biology of long COVID, they may be able to make inroads against other post-viral syndromes.

Progress with long COVID will also leave the community better positioned to act the next time a pandemic strikes.

“We need to be ready so that the very moment people hit the front doors of hospitals or health-care settings, everything's ready to go,” says Summers.

 

Why impact of ‘long Covid’ could outlast the pandemic

https://www.tbsnews.net/analysis/why-impact-long-covid-could-outlast-pandemic-234982