UK: Priority Setting Partnership for ME/CFS

Bumping up- please apply and be heard.

 

Any update for this venture? This tweet suggested the report would be published by end of March.

https://twitter.com/user/status/1493851134468968448

 

Heya @Milo - the team is just finalising some things to try and make the most out of the launch so that it creates some real waves - hopefully shouldn't be too long!

 

Are all the charities and F-ME on board for the publication with national media outlets lined up for press releases?

 

All stuff we're working on

 

Results from the PSP will be released May 12th.

 

https://psp-me.co.uk/
Priorities released

 

I hope there is a bit of press for this. Obviously not a big story like the NICE shenanigans, but a story nonetheless.

 

Full report can be read here, https://psp-me.co.uk/explore-the-top-10/the-full-report/

The Top 10+ ME/CFS research priorities

Priority 1 - What is the biological mechanism that causes post-exertional malaise (symptoms caused or made worse by physical, mental or emotional effort, which can be delayed) in people with ME/CFS? How is this best treated and managed?

Priority 2 - Which existing drugs used to treat other conditions might be useful for treating ME/CFS, such as low dose naltrexone, or drugs used to treat Postural Orthostatic Tachycardia Syndrome (POTS)?

Priority 3 - How can an accurate and reliable diagnostic test be developed for ME/CFS?

Priority 4 - Is ME/CFS caused by a faulty immune system? Is ME/CFS an autoimmune condition?

Priority 5 - Are there different types of ME/CFS linked to different causes and how severe it becomes? Do different types of ME/CFS need different treatments or have different chances of recovery?

Priority 6 - Why do some people develop ME/CFS following an infection? Is there a link with long-COVID?

Priority 7 - What causes the central and peripheral nervous systems (brain, spinal cord and nerves in the body) to malfunction in people with ME/CFS? Could this understanding lead to new treatments?

Priority 8 - Is there a genetic link to ME/CFS? If yes, how does this affect the risk of ME/CFS in families? Could this lead to new treatments?

Priority 9 - What causes ME/CFS to become severe?

Priority 10 - How are mitochondria, responsible for the body's energy production, affected in ME/CFS? Could this understanding lead to new treatments?

Priority 10+ - Does poor delivery or use of oxygen within the body cause ME/CFS symptoms? If so, how is this best treated?

 

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I think today as a launch day may maximise exposure

 

Maximise exposure to patients maybe. But that's not really what I'm talking about.

 

My brain is not as well-trained to see those issues - could you elaborate a bit @Trish ?

 

Sadly, PSPs don't do that. They just raise priorities and researchers are left to do as they want with them.

Personally, I wanted fewer 'pet theories' in there (e.g., the ones about exploring presumed immune, mitochondrial, vascular and neurological dysfunctions) for the simple reason that they make assumptions about a favoured model of pathology -- which makes finding an answer harder if it's not one of those things.

I'd have liked a broader question (e.g., 'What causes ME?' 'How can we prevent, treat or cure the causes of ME?' etc) to allow researchers to cast the net more widely. But I can see why that wasn't done (the very real fear that if it's too broad, it'll just be BPS approaches forever).

For similar reasons, I wasn't enthused by 'try drug x' recommendations, either. The one we've got in there about drugs is okay, but I think we might waste a lot of time proving that fad drugs don't work, and some desperate people will keep taking them anyway.

A broader question, such as 'Which drugs can treat ME?' might have been simpler and less fraught. I suspect we didn't get that because some people wrote in advocating for a clinical trial of their own favoured treatment, rather than pharma trials in general.

I'm glad the diagnostic test is in there, though. Some people thought that could come later, after we figure out what's going wrong, but I highlighted the point @Jonathan Edwards has made previously about rheumatoid arthritis (where a diagnostic test came first and then led to understanding the disease mechanisms several decades later).

Plus, two of the constant themes from the qualitative data we saw at NICE were delayed diagnosis and diagnostic uncertainty. Diagnostic tests kill two birds with one stone.

 

The report is endorsed by Sajid Javid P5:

 

There is definitely a case that we should do things slightly differently for ME, and I tried to articulate this myself at least once. The same treatment doesn't always mean equal treatment, or fair treatment.