Research priorities for ...(ME/CFS): the results of a James Lind alliance priority setting exercise, 2022, Tyson et al

Sly Saint said:
ABSTRACT
Objective: To identify research priorities of people with myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) and those who support and care for them.

Method: Using the James Lind Alliance’s protocols, online surveys and workshops were held. The first survey asked participants from the U.K. to submit research questions about ME/CFS which were important to them. In the second, participants prioritised frequently submitted questions from the 1st survey. These were short listed and then workshop discussions were held to reach consensus on the top ten research priorities.

Results: 1565 participated in the 1st survey and 5300 research priorities were submitted. 1752 participated in the 2nd. In both surveys, the predominant demographic was white, middle-aged women with ME/CFS. 15–17% were family/carers of people with ME/CFS and 4–6% were health and social care workers. From the 1st survey, 59 summary questions were identified. These were prioritised and short listed to 18 questions. Of these, the top 10 covered 1. Post-exertional malaise, 2. Use of existing drugs for other conditions, 3. Diagnosis, 4. Autoimmunity, 5. Sub-types, 6. Post-infective cause, 7. Neurological symptomology, 8. Genetics, 9. Severe ME/CFS, 10. Mitochronical dysfunction and 10 (equal) Oxygenation dysfunction.

Conclusion: People with ME/CFS, their families and carers, and health care professionals worked together to identify, for the first time, the research priorities for ME/CFS. These focus on the biomedical causes of ME/CFS and how to diagnose, treat and manage it. Researchers and funding bodies should consider these in their plans for future research.

https://www.tandfonline.com/doi/full/10.1080/21641846.2022.2124775?src=
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I'm not sure whether this was open access initially but it is now.
 
A few comments though I have not read the paper.

Priority 3 - diagnosis

Does it entail finding a diagnostic biomarker, training of healthcare professionals so that they can recognise ME, or both?

If it is about finding a diagnostic test, the NICE guideline already says this is a key recommendation for research. I would think that most respondents understood this priority as “we need more basic research into the mechanisms of ME and that would lead to identifying a biological test”. In any case it probably just circles back to priority 2, that is, figuring out PEM.

Given that it will take years to get a diagnostic test, training HCPs to be able to recognize ME (as per the NICE guideline) is just as much of a priority. Even if and when a test becomes available, ME will have to be suspected on clinical grounds first.

Priority 6 - post-infectious ME

There is a need for definitive epidemiological proof that ME can be triggered by infections. We do have some prospective studies such as the Dubbo study and Leonard Jason’s post-infectious mononucleosis ME study, but the only a small number of cases emerged in those and they weren’t followed up for long (1 year at most).

I think we could benefit from a nationwide epidemiological study that would enroll patients with an acute documented infection, whether in primary care or at the hospital, and follow them up over the long term (e.g. at 3, 6, 12 months, then 2 & 3y, then 5 & 10y). Of course, this requires significant funding.

Priority 9 - severe ME

Severe ME made the top 10 but I suspect that if more people with ME and/or their carers had been able to respond, it may have placed higher. I certainly would have preferred to see it up there as it may have incentivised the DHSC to consider it as more of an urgent topic.
 
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cassava7 said:
There is a need for definitive epidemiological proof that ME can be triggered by infections. We do have some prospective studies such as the Dubbo study and Leonard Jason’s post-infectious mononucleosis ME study, but the only a small number of cases emerged in those and they weren’t followed up for long (1 year at most).
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That work continues- These patients and their peer controls at the university are being longitudinally studied
 
Sean said:
Unfortunately probably the best way to get a reliable picture of PEM and any underlying changes accompanying it is to push patients hard into complete collapse over several days, while monitoring everything you can.

Something is changing in the body as PEM is cranked up. But what?

Obviously this is a completely unacceptable approach, even if it delivered a clear result. Which is why we really need an in vitro test for PEM, both its presence and degree.

Not sure where the blood plasma stuff is at, but that sort of thing.
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Sadly I think - but it should only be with the right people - we will get volunteers because I was pushed beyond this every day for so many years due to lack of understanding. The only way to have stopped this (and people still don't 'get' the magnitudes now) is to have a print-out proving it.

I probably would have given that was every week for me, as long as my workplace (any other important back-ups financially) was behind me ie I could get 'dispensation' for the fall-out and it wouldn't have left me high and dry should I not recover by invalidating certain things - which will be where the interesting issue is. Given BPS claims it doesn't exist and did it as part of a treatment for so long. Can both be true?

You probably can split it and reduce the extent to under what might happen at a peak work time when under pressure and still see an effect that could be extrapolated for many of these things though. Or cover your back by picking those who are already stuck in these situations - and do the tests after their days of work.

What is the really impossible bit is the fact that proper damage is really done longitudinally - cumulatively. I can't think of any safe way of doing this other than adding up the 'one-off effects' and much better clinics with proper scientists alongside clinicians replacing the therapists. In order that their focus is more on measures that don't do harm but do monitor downward curves and will have good history takers to work out what explains these.

The world is full of people who will question reality or think it is maleable or a negotiation. Might work with most illnesses, devastating with ME as 'just 10% more' might as well be just 200% more than your threshold vs 'just 10% more' than other chronic illnesses - where the results show at the time, people feel guilty, pull their demand at 5% and don't ask again.
 
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