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

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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



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."
 
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A victory for ME sufferers could be a victory for women and those with Long Covid
At the beginning of summer, I went to see my female GP about long Covid symptoms.

Out of every 5-6 weeks, I would (and still do) lose three of them to fatigue, aches, sleeplessness, and brain fog. All I could do was lie on the couch. I'd had to drop a lot of my exercise, including my HIIT classes at F45.

It was in the middle of a 45-day fitness challenge, that I first had my fatigue crash. I was doing daily classes, and after three one week, on the fourth day, my resources seemed to have entirely run out.

I told my doctor that I was starting to do what I called progressive exercise this time around; NICE calls it graded exercise. I started a Couch-to-5k programme and was adding in various exercises during the week. I even tried to start up another F45 challenge.

I was hugely praised for this approach to exercise and told to continue.

It didn't work. I lasted two weeks until my reserves were all used up.

Today, it has been made official that the graded exercise approach is not necessarily the right one for people with myalgic encephalomyelitis (ME), which is also known as chronic fatigue syndrome (CFS), and not for similar syndromes such as Long Covid potentially.

The key symptom of ME is post-exertional malaise (PEM), which means that overexertion causes a serious flare of symptoms that in some cases can last months or even years.

After 14 years of recommending graded exercise therapy the National Institute for Health and Care Excellence (NICE) has removed this treatment from its new guideline on ME/CFS.
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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.





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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.

 
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.

 
rvallee said:
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The full article can be accessed here.

Money quote:

One respondent said his was “a sham service. There is only a pretence at assessment before being shunted onto a rehab programme that is designed for recovered Covid patients, not Long Covid.”
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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.
 
Art Vandelay said:
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.
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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
 
Kalliope said:
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.
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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.
 
Jonathan Edwards said:
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.
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She explains a bit more at 30 minutes into the podcast. I was not able to work out the name she uses for this model, perhaps someone else can. Developed by a dr. Master?
 
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