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

The New York Times
Another Struggle for Long Covid Patients: Disability Benefits

I have a temporary subscription to NYT so the article is open for me, but I don't know whether it is for everyone. If it's not, and you want to read it, just send me a PM and I'll copy/paste it to you.

Quote:
Long Covid has proved similar to other diseases that can be difficult to diagnose, including myalgic encephalomyelitis (also known as chronic fatigue syndrome), fibromyalgia, rheumatoid arthritis and post-treatment Lyme disease syndrome — conditions that can also cause fatigue, memory issues and joint pain.

Patients with these diseases often find it difficult to qualify for disability benefits and get accurate, timely medical diagnoses. Studies from the Centers for Disease Control and Prevention and organizations that represent people with those conditions have shown that some patients can spend years or even more than a decade trying to determine what causes their illnesses.

Many medical schools do not offer enough training on these types of diseases, and research for them is underfunded, said Linda Tannenbaum, chief executive of the Open Medicine Foundation, a nonprofit that funds research into chronic complex diseases like fibromyalgia and long Covid. “Most patients cannot get disability benefits,” she said.

Dr. Stephen Martin, a physician and professor at the University of Massachusetts Medical School, said the complex nature of diagnosing long Covid required the coordination of various specialists who also have specific knowledge of the condition. Many are overbooked, he said, with wait lists of more than six months — especially for patients who do not have good health insurance.

“This really hits us in our Achilles’ heel of health care,” Dr. Martin said. “The American health care system really isn’t set up to do this at scale.”

 

A Belgian medical authority has published a report on Long Covid. No idea if it's any good.

https://twitter.com/user/status/1453015307161939976

https://twitter.com/user/status/1452984747869757455

 

At least some are sounding warning shots
https://twitter.com/user/status/1453146704639709188

 

In three hours:
https://twitter.com/user/status/1453713997665128451

 

https://twitter.com/user/status/1453517045899878406

 

It's a damn shame this isn't studied in general. One of the main consequences of psychosomatic ideology is that it turns the people closest to you against you, or makes them go away in a time of greatest need.

https://twitter.com/user/status/1453435669905350660

 

Sharing this event/dialogue from last week that contains a fair amount of ME discussion (the Q&A part with the researchers & clinicians begins around the 39 minute mark). Features Dr. Levine, Dr. Lipkin, Dr. Oved Amitay from Solve

https://www.youtube.com/watch?v=H69vpmclRfY

Anecdote from Dr. Lipkin:"The field of ME/CFS has made enormous strides over the past several years. What we've learned is that it is not a single disease. There are many different disorders that present with similar phenomenon. The same thing is likely to be true with Long COVID.The question will be how do these all converge through the final common pathways, to result in this disorder that we receive as fatigue, cognitive dysfunction, and some of the other phenomena that you hear people describe.

We are very concerned that in the process of investing in Long COVID, without adequate attention to ME/CFS in parallel, that opportunities to identify the triggers in Long COVID, ME/CFS, Gulf War Illness, similar kind of conditions, may be missed.What I think in terms of what we need to do now, and I would encourage anybody involved in this call to pursue this, is to look at the ME/CFS literature very carefully because I think you will find clues there that may be helpful in unraveling in what's going on in Long COVID. And I think these fields can converge and we can enlighten one another."

More for Lipkin: "...there are biomarkers for ME/CFS. We have had a preliminary look at some patients with Long COVID and they seem to be consistent. It's not the sort of thing I would promote at this point [2-Day CPET...?]....this is a plea for those of you who would like to see these kinds of discoveries expedited, please do access the ME/CFS resources that we have. There are NIH funded centers who would eagerly partner to sort these as rapidly as we can."

From Dr. Levine:"I think the silver lining will be that finally we will find some recognition for ME that we've been seeking for years. We don't have a place at the table so to speak and so I'm hoping that this and other activist groups will help support and bring us more to the forefront so that we can bridge the gap and learn more about these complex diseases"

More from Levine: "there are some emerging biomarkers that our centers have determined to be reasonably reproducible and that separate people with ME from age and gendered matched normal people. As Ian referred to, particularly in the microbiome and certain cytokine abnormalities, we've definitely found differences within the group."

 

A victory for ME sufferers could be a victory for women and those with Long Covid

https://joannab.substack.com/p/a-victory-for-me-sufferers-could

 

This refers to the NICE guidelines, but as dr. Asad Khan brings in the aspect of Long Covid in his tweets, I figured this was the best thread. Interesting, but not surprising, what he's saying about silent colleagues who have worried about linking ME to Long Covid and the reason why. I hope he's right in that some are now shifting.

 

It turns out that ideology is a very bad basis to make public health decisions. In order to avoid children getting Long Covid, thinking it's anxiety, they argued making sure as many would be infected, the cause of it. There really needs to be a sort of media campaign equivalent to "this is your brain on drugs" but instead it's ideology. Sniffing glue is nothing compared to this.

https://twitter.com/user/status/1455551022017953800

 

It also turns out that building a clinical model on the basis of an ideology is also a very lousy way to do public health. Who knew? Somehow, very few people in medicine. I think that's a problem. I would readily suggest this is a serious problem.

Tweet because of author and paywalled. And as is tradition the satisfaction numbers are wildly inflated, since too many patients are good patients who don't complain and want to credit people for trying, even if it's completely wrong.

https://twitter.com/user/status/1455449202578927618

 

The full article can be accessed here.

Money quote:

These long covid clinics were always going to be Potemkim villages. We could have told them that (and we did).

They're not even bothering to pretend in Australia. Apparently those with LC are being dismissed or being advised to go to the existing private clinics that have been scamming ME patients for decades for GET and CBT.

 

I haven't got any figures, but judging by the number of job ads for staff for ME/CFS clinics that are now also LC clinics it's a similar picture here. Quite how they are going to handle the removal of GET and CBT (curative) remains to be seen.
https://www.s4me.info/threads/me-cfs-services-in-the-united-kingdom.5625/page-14#post-383891

 

I have received confirmation that Dr. Lucinda Bateman, part of the US ME/CFS Clinician Coalition, will be a part of the University of Utah's RECOVER Initiative efforts to study Long COVID.

https://healthcare.utah.edu/publicaffairs/news/2021/10/hess-metz-grants.php

After reaching out to a University of Utah MD affiliated with the project, they sent me "The Bateman Horne team is part of our RECOVER initiative in Utah and we apologize that was not clear in the announcement. You are absolutely right, Dr. Bateman is an amazing clinician and resource for this work."

Just wanted to share.

 

Dr. Amy Small was interviewed in the last episode of the podcast Talking General Practice.
The interview begins at 11.45 minutes into the podcast.

She talks about her infection with Covid-19 and developing Long Covid. Then of how she improved with dietary changes (like cutting out sugar), osteopathy, beta blockers etc. She says she received advice from ME patients.

Talks about POTS.
Also talks quite a bit about pacing and explains what it entails.

She then talks about how she envisions how GPs in the long run can follow up LC patients, but with access to multi disciplinary teams and tests in a hospital setting.

She regarded herself as fully recovered. Full time job and able to exercise a lot. But unfortunately she relapsed after the booster vaccine. She is now back on medication and is pacing "back to health".

Towards the end she says we have to look at the ME community. That they called themselves the millions missing and that's really what they are. That there is so much to learn from them and strength to gain from their experience.

This is the time to change. If we can get this right for Long Covid patients, we can get it right for other conditions. We can't keep ignoring chronic disease.

https://www.gponline.com/podcast-industrial-action-living-long-covid/article/1732305

 

I have sympathy for someone ho has developed Post Covid problems and a medical professional may have useful insight from experiencing an illness but their conclusions are not necessarily entirely helpful.

The ida of a GP managing a problem with help from a multidisciplinary tam sounds like the same bad old days approach. Everyone in this seems just to look at it from their business angle. To get anywhere useful e need specialist physicians who can develop evidence-based care. I am not sure hat a GP has to offer.