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

another doctor admitting there is nothing he can do for his patients but still insisting patients come to him /his clinic . once more money for old rope

 

If someone attends, it could be worth recording (just mentioning that after a few times of people wishing they had a copy of a now vanished webinar).

 

VOX Scientists haven't figured out long Covid. Here are 5 of their best hypothesis

Quotes:

Most people who get the coronavirus will fully recover and go right back to their lives. But the latest research suggests that at least 10 percent have long-term symptoms, even after their body has apparently cleared the virus.

The condition, known as “long Covid,” has emerged as a scary feature of the pandemic — a reminder that even as hospitalizations and deaths come down, millions of people will continue to suffer from the aftermath of infection.

And, as it turns out, “this isn’t unique to Covid,” Akiko Iwasaki, an immunologist at the Yale School of Medicine, told Vox.

Instead, Covid-19 appears to be one of many infections, from Ebola to strep throat, that can give rise to stubborn symptoms in an unlucky subset of patients. “It is more typical than not that a virus infection leads to long-lasting symptoms in some fraction of individuals,” Iwasaki said.

.....

Even with growing awareness about long Covid, patients with the condition — and other chronic “medically unexplained” symptoms — are still too often minimized and dismissed by health professionals.

People “want disease to kill you, or they want you to return to miraculous good health,” said Jaime Seltzer, director of scientific and medical outreach at the chronic fatigue syndrome advocacy group ME Action. “When you stay sick, compassion can fade. And that is not just friends and family. That is your clinicians as well; they want somebody fixable.”



ETA: There's also a podcast from Vox on same subject

 

Full transcript is now available here
These are the parts there Koroshetz mentioned ME:

WALTER KOROSHETZ: I’d say that from our point of view, I think one thing that David said is really important that I’m trying to develop treatments that will help people. This is the time to do it. I think the chances of things helping are going to be in the short time frame after the infection.

There is a condition called myalgic encephalomyelitis/chronic fatigue syndrome, which we’ve been working on for a number of years. And it’s been a really tough nut to crack to understand what’s going on.

But the symptoms are almost identical to what you hear in a lot of the post-acute sequelae COVID folks. And so I think this is our opportunity to try and understand what is wrong in the post-acute state of COVID. But I think it could also have a tremendous effect on the people who are suffering with ME/CFS all these years.

Many of them started after an infectious illness. But you don’t find out about it for a year or two later. You don’t know what the infection was. You don’t have the chance to study it, like we have now in COVID.

So this, I think, is a golden point in time to try and understand this condition and try and help people.

....

WALTER KOROSHETZ: Well, I have the same answer with a different twist. And that is that what I would like to know is what’s the difference between those people who have the same degree of illness from COVID, who get better quickly, versus those who don’t get better for months and months.

And I think this is the opportunity we have to get at that. I think that’s going to shed a lot of light on this problem and potentially other conditions, like ME/CFS.

 

Science How scientists are teasing apart the biology of Long COVID

M.S.: I find in talking to patients, they’re afraid to exercise because they think they have heart damage or lung damage. I tell them that we’re doing a lot of testing. If we don’t find any evidence of serious damage in the lungs, I encourage them to start gradual exercise. There are a lot of mental health issues, and in the control group, too. There is a lot of room for better mental health evaluation in the community, and treatment.

E.L.F.: The only thing I would add is if you think that the patient has chronic fatigue syndrome, then it’s more of a conservational approach in terms of their energy, rather than forcing an exercise progression.

Q: Do you think that some of these cases are chronic fatigue syndrome?

E.L.F.: I think there’s a subgroup of post-COVID patients where maybe they will fall into that category, but there might be others that have something else.

 

Also on the same topic:

Julia Belluz April 14 2021
https://www.vox.com/22369734/long-hauler-covid-vaccine

 

That really doesn't describe "scientists teasing apart the biology" to me. It reads more like typical sports commentary: "my prediction is things could go one way or another but it sure could be something, or maybe not". Thanks, chief.

That people have been stuck for so long on the "fear of exercise" script is incredible failure. Shows the massive gap between memorizing a textbook and learning from experience. Especially the whole "the pandemic is scary and everyone is afraid and that explains the massive mental health crisis", when in reality the vast majority of people are mostly annoyed and indifferent to it and have been the whole time. Again physicians are generalizing their personal experience of working close to all the death, unaware that the public doesn't see any of it on a daily basis, only the annoying restrictions preventing them from going boating or whatever.

 

Re: Today's BMJ webinar: Post-covid conditions (‘Long covid’ and other sequelae of covid disease)

Code:

https://twitter.com/bmj_latest/status/1380830468816392194

The recording is on Youtube now:

Code:

https://youtu.be/2BeC_fVhAXs

(Didn't attend or watch.)

 

Duration is 2 hours and 18 minutes. Not sure I'll be able to watch the whole thing, but CFS is mentioned already 8 minutes in by Eliane Maxwell - Clinical Adviser at the National Institute for Health Research

https://www.youtube.com/watch?v=2BeC_fVhAXs

ETA: At 50 minutes the Italian researcher Simone Benatt goes through a study he did on Long Covid patients in Northern Italy. Interestingly he says that when you ask Long Covid patients how they are, they will often answer according to how the last few days have been, but that one should keep in mind as a bias that the condition is fluctuating. He thinks it's important to capture the day-to-day fluctuation of symptoms because it is probably indicating a mechanism which is specific for this condition.

He also mentions post-infectious chronic fatigue syndrome one of several diagnose to be aware of regarding convergence (54 minutes in).

ETA:
At 1 hour 24 minutes there's a talk given by GP Richard Byng who has suffered and recovered from chronic fatigue. Sceptical to excessive medical assessment. Refers to psycho-neuro-immuno-endocrine types of problems that may be happening to Long Covid patients similar to ME/CFS. Says adverse childhood events are very important for the development of ME/CFS. Says they are guessing when it comes to treatments, and mentions physical rehabilitation and talks about a combination of pacing and graded exercise as "a sensible way. Very individualised".

ETA
At 1 hours 39 minutes Rob Barker-Davies from Defence Medical Rehabilitation Centre talks about exercise. Says they are aware of the discussions concerning the NICE guidelines of CFS. Not advocating fixed progression, but still recommending physical activity with "holistic view". "Incorporate that walk to the bus stop".

ETA:
At 1 hours and 50 minutes Phil Hammond who works with Esther Crawley starts leading the panel debate and talks briefly about his work.

 

https://twitter.com/user/status/1382749179110436869


I really do wish journalists got the details right, though. The NIH did not allocate this money, the US Congress mandated them by law. Very, very (hell once more: very) different circumstances. It doesn't help that NIH leaders repeat that confusion to make the institution look good.

If the NIH had been left to decide this on their own I would be surprised if it had been above $50M in total. This was political leadership and advocacy (as well as a really weird political context at the time), medical leadership has been largely absent from the issue, Fauci's occasional comments being most of it.

 

https://twitter.com/user/status/1382796398068969472


This seems very Wessely "mass hysteria" and "the real illness is fear":

https://twitter.com/user/status/1382796410505068551


This is about the Crawley research that got the biggest chunk of NIHR funding.

 

https://twitter.com/user/status/1382805779087044612

 

Sadly ACES are all pervasive and hoover up funding .

 

Goop
Exploring the link between Chronic Fatigue syndrome and long covid
Q&A with Ami Mac MD
"The reason that we began to study this at Stanford is because Ron Davis, PhD, the cochair of the Stanford Genome Technology Center, who is one of the prior leaders of the Human Genome Project, became a champion for this condition. Ron’s son, Whitney Dafoe, has been severely affected by ME/CFS and is virtually unable to leave his room. Ron has written a book with Tracy White called The Puzzle Solver, about Ron’s quest to determine the biological basis of ME/CFS and to help his son. That name was given because Ron was at the forefront of being able to solve something as complex as deciphering the human genome. He tends to take on very difficult and challenging problems that others fear taking on. And this has now become his life’s work, and mine as well."

https://goop.com/wellness/health/are-chronic-fatigue-syndrome-and-covid-19-linked/

 

Long thread summarising the BMJ webinar on Long Covid
https://twitter.com/user/status/1382822400702701569

Note: This is not the psychiatrist called Peter White.

 

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 . . .