Building the ideal ME/CFS research institute

I don't know why. I'm describing what I'm guessing is a popular view. Maybe I'm wrong. I don't have insight into the collective mind of the medical profession, or that of the decision makers who are concerned about cost efficiency. If cost efficiency is considered important, and it's calculated with a formula that returns zero if there is no proven treatment or diagnostic, that might be the why.

 

An ideal clinic or chain of clinics would also have the option for in patient assessment and provision for assessment/work in the patient’s home, and would have ‘welfare’ officers, nurse key workers and advisors for aids for daily living. There would be medical consultant input for diagnosis, provision of any medical palliative care, monitoring and assessing new symptoms, especially given even once initial diagnosis is confirmed people with ME often develop new symptoms and are at higher risk than the general population for developing other health issues.

Such a service would aim to develop models of good practice and accumulate information and resources on practical aids, management of related symptoms such as orthostatic, assessing and managing dietary intolerances, use of aids for daily living, use of sun glasses/blindfolds/headphones, etc, etc, etc.

So I agree with @Jonathan Edwards that there is still a significant role for medical oversight over people with ME even though we currently have no evidence based treatments. Such a service would not necessarily aim to see every one with ME but would also be a resource to GPs and other medical practitioners. For example anaesthetists about to knock out someone with ME could get advice from this service. Ideally the staff would also be involved in research with direct university links, perhaps even having the head of the service also holding a relevant academic chair, though the Bath/Bristol example of this in the UK does not necessarily inspire confidence.

The academic research would draw on people seen by the service as potential research subjects but they would also develop strong links with local medical services, local support groups and voluntary groups/charities.

I would see the value of such a service would lie as much in developing a good medical understanding of presenting symptoms and their management as in researching new treatments, and in communicating that understanding more widely. However it would also provide informed medical and patient input to the academic research.

I would also see such a service having a role in relation to Long Covid, providing support in relation to short term post viral issues and how they relate to the risk of developing into ongoing ME/CFS, but also working with other specialists such as cardiologists or neurologists in deciding who rehabilitation might help or how to manage rehabilitation of other cardiac, lung or neurological issues in the context of PEM restricting possible activity levels.

Certainly my personal feeling at present there is as much to gain in developing good models of symptom management as continuing with the current pretty potluck investigations of diagnostic biomarkers or investigations of drug treatments currently approved for other conditions.

 

We need to be cautious about how far 'ideal' can be taken, Jacob's proposal is quite tightly defined, and while he may come back with a broader interpretation, "Research institute" is what he has asked about and for which he has given a well described context - that is a research institute set within a model of philanthropic and institutional support located within the USA and operating within a locally familiar philanthropic and institutional culture.

What though is the viability of this hospital/University model in the current global circumstance ? Medical inflation is running at historic highs: 2023 Global Medical Trends Survey and there's a global shortage of health care workers that shows no sign of being addressed Health workforce .

Macmillan Cancer Support is 112 years old, it has a disease focus that frightens everyone and there's good understanding that 1 out 2 people will need a cancer treatment at some point in their lives - cancer also affects small children which provides for the best heart tugging imagery a fund raiser can hope for. ME/CFS is niche, contested and not very exciting, which actually brings us circularly back to Jacob's proposal - which is finding a way to cross the ME/CFS funding gap by having a project sellable to big philanthropy.

Invest in ME Research have been trying to get a Centre of ME Excellence going with UEA for over decade - apparently without success, perhaps there's scope to mesh Jacob's proposal with the IiME project but the question then is what bit of big philanthropy is likely to be interested in funding a set up in Norwich, a small City not exactly recognised as a global scientific powerhouse.

Probably the only UK option for a University/Healthcare set up that might be sellable to big philanthropy is (dependent on success from Decode ME) a threeway tie between Chris Ponting's Medical Research Council Human Genetics Unit, Edinburgh Medical School and the Royal Edinburgh Hospital. There's a large enough cosmopolitan population to yield a regional study cohort, the Uni/Med School have global renown and the MRC link should add kudos. Whether Ponting/Edinburgh would be interested, able to accommodate or participate is an unknown. Otherwise I think we're looking at the US and tailoring a proposal to something that is not dependent on patient throughput - I'd go with global epidemiology of ME/CFS but then I would say that.

 

I already started a thread for this topic here https://www.s4me.info/threads/design-your-own-me-hospital.11228/ .