The Pharmaceutical Journal: Opening the black box: the researchers trying to find treatments for long COVID

ahimsa · Apr 2, 2022

Opening the black box: the researchers trying to find treatments for long COVID
March 17, 2022

pharmaceutical-journal.com said:

With an estimated 1.5 million people living with long COVID in the UK, and this number expected to grow, understanding this troubling condition and how to treat it has never been more important.

When patients began reporting lingering symptoms following COVID-19 infection, just a few months into the 2020 pandemic, initially they were ignored.

“We owe a debt to patients here,” stresses Amitava Banerjee, professor of clinical data science at University College London.

“Remember in May 2020 — it was patients who defined this, not doctors, not researchers, not politicians. Their mobilisation is what has forced the World Health Organization to have a consensus definition, forced research funding calls, and people like me on the clinical research side to take a look.”
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I did not read the whole thing but I noticed this section on ME/CFS:

pharmaceutical-journal.com said:

Myalgic encephalomyelitis and chronic fatigue syndrome — what does long COVID mean for us?

“When people hear about long COVID in the news as if it’s a new condition and no one’s come across anything like it before, people who have been living with myalgic encephalomyelitis (ME) for many years find that difficult to hear,” says Peter Gladwell, clinical specialist physiotherapist and service lead at the Bristol ME Service, and a member of the British Association of Clinicians in chronic fatigue syndrome (CFS)/ME (BACME).

There are no drugs approved in the UK for fatigue in ME/CFS. The few medicines that are given to manage symptoms are rarely evidence-based in the ME/CFS population but translated under expert guidance from other conditions, such as neuropathic pain or nausea.

There are several reasons behind this — a lack of funding has left ‘fatigue science’ decades behind medical understanding of its pathway peers, such as pain or inflammation. This prevents drug–target identification and design of novel therapies.

In addition, the ME/CFS community comes with added layers of complexity that challenge drug–based therapy advancement.

“With ME/CFS it is difficult to gather a cohort with clear, documented evidence of an infective onset — people will often spot a couple of things, a complex pattern that triggers ME/CFS in their life, and it’s very difficult then to try and tease out to what extent these different triggers are perhaps creating a response within the host,” Gladwell explains.

“Whereas with long COVID, it’s a bit more obvious it’s a COVID-19 infection that is the significant factor and that documentation is really helpful for research.”

The sheer numbers of people with long COVID mean a subset of similar medical history can be recruited for clinical trials.

“Another reason is people with ME/CFS are often sensitive to medicines and can’t start at the dose someone else might,” Gladwell adds. “So then you don’t have a standard intervention that you can compare, because each patient has got to titrate up gradually.”

Although there are early indications of medicines sensitivity in the long COVID cohort, their size means they have an advantage in overcoming this complexity.

There is hope that the spotlight on long COVID will advance the understanding of fatigue and generate new therapies that can also benefit the ME/CFS community.

“But I think that whatever findings come from long COVID research will need to be re-tested in the ME/CFS population.”
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ahimsa · Apr 2, 2022

Just FYI, I found the link to this article in a tweet by Solve ME

https://twitter.com/user/status/1509624792911003649

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Trish · Apr 2, 2022

ahimsa said: ↑

Opening the black box: the researchers trying to find treatments for long COVID
March 17, 2022

I did not read the whole thing but I noticed this section on ME/CFS:
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That quoted section is all focused on fatigue, with no mention of PEM. So disheartening that a supposed ME expert still doesn't get it.

Andy · Apr 2, 2022

Trish said: ↑

That quoted section is all focused on fatigue, with no mention of PEM. So disheartening that a supposed ME expert still doesn't get it.
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He was lead author on this 2013 paper, "Use of an online survey to explore positive and negative outcomes of rehabilitation for people with CFS/ME"

"Purpose: First, to explore the experiences of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) of rehabilitation therapies so as to build an understanding of reasons for the discrepancy between the notably mixed experiences regarding effectiveness reported in patient surveys and the RCT evidence about the efficacy of Graded Exercise Therapy (GET). GET is a form of structured and supervised activity management that aims for gradual but progressive increases in physical activity. Second, to review patient experiences of two related rehabilitation approaches, Exercise on Prescription (EoP) and Graded Activity Therapy (GAT).

Method: An online survey conducted by the charity Action for ME generated qualitative data about 76 patient experiences of rehabilitation undertaken during or after 2008, examined using thematic analysis.

Results: Both positive and negative experiences of rehabilitation were reported. Positive themes included supportive communication, the benefits of a routine linked with baseline setting and pacing, the value of goal setting, and increasing confidence associated with exercise. Negative themes included poor communication, feeling pushed to exercise beyond a sustainable level, having no setback plan, and patients feeling blamed for rehabilitation not working.

Conclusions: The negative themes may help explain the negative outcomes from rehabilitation reported by previous patient surveys. The negative themes indicate rehabilitation processes which contradict the NICE (National Institute for Health and Clinical Excellence) Guideline advice regarding GET, indicating that some clinical encounters were not implementing these. These findings suggest areas for improving therapist training, and for developing quality criteria for rehabilitation in CFS/ME."

Paywall, https://www.tandfonline.com/doi/abs/10.3109/09638288.2013.797508
Open access, https://www.bristol.ac.uk/media-lib...s of rehabilitation for people with CFSME.pdf

InitialConditions · Apr 2, 2022

Managed to get the updated BACME name, but still got it wrong!

Pete Gladwell is one of the more active BACME members, and has been part of the dysregulation stuff.

rvallee · Apr 2, 2022

Trish said: ↑

That quoted section is all focused on fatigue, with no mention of PEM. So disheartening that a supposed ME expert still doesn't get it.
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The mention of "fatigue science" is just as much part of the problem as the BPS ideologues. It's almost impossible to solve a complex problem while misunderstanding its nature and obsessing over one singular aspect. Ugh.

duncan · Apr 2, 2022

Fatigue, balance, headaches...they are all "lingering". Lingering like a scent in the air, or a gaze, or a kiss. It's all so... romantic. And implicitly temporary.

Researchers on all sides of the endeavor, please stop contributing to the problem with careless wording. These aren't novels you're writing.

Symptoms remain. Symptoms persist.

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The Pharmaceutical Journal: Opening the black box: the researchers trying to find treatments for long COVID

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