[UK] A proposal for an ME/CFS, Long Covid, and Post-Infectious Disease research platform

It's likely that not everyone who currently has an 'ME/CFS' diagnosis will actually have whatever problem the new biological explanation points to. Some will be left as a 'mysterious chronic fatigue' afterthought and they'll be great prey for the psychologisers - not only are all their tests normal but they don't even have what they thought they had!

 

I'd disagree that we simply have to wait for a definitive finding from research. Even "independent" and "arms-length" agencies listen to political signals and are not insulated from evolving political & social trends & understanding. Even if a lot of what is in the delivery plan isn't ideal there may be benefits flowing from it as the leaders of these agencies sense which way the winds are blowing. There is much that could be done to shape attitudes & obtain better care that is not being done, & there is also still too much misguided & counterproductive advocacy out there, although things have improved in recent years.

A lot also depends on individuals. A single sympathetic person in a high-level position can effect great change; IIRC the idea of the delivery plan only came about because of Javid's interest in ME. A concerted effort focussed on things that could bring about change that would propagate through systems, such as medical education, should IMHO also be a focus.

Far too many pwME are currently, today, falling through the cracks; neglected, dismissed or subjected to terrible care; malnourished; unable to receive care for entirely separate medical problems. The few physicians who were interested in helping the severe & very severe are retired or only taking on a few private patients with no-one to replace them. Alleviating that suffering - on a purely human level - should be the greatest priority regardless of any research results or non-results.

 

I was listening to Terry Pratchett’s Truckers today and this quote with seemed appropriate to some of the discussion here

They’re fun children’s books about Nomes, little people in a human world, but also like so much Pratchett come with a message. As Wikipedia says “The main theme in the trilogy is the struggle of challenging society's accepted beliefs in the face of new information.”

 

Dear @Kiristar , thank you for providing some background information. My reading of this discussion, besides some other important political topics, is that most people commenting here would find this plan rather agreeable if it included a plan for something like patient cohorts under clinical care. You by no means have to defend anything, but do you perhaps know why this wasn't included at the current time, whether it could still be included in the plan or which hurdles have to be overcome to make something of that form possible? If not, do you perhaps know who best to talk to about this?

Both the Netherlands and Germany, which seem to be a motivation for this plan, seem to have something of that sort at some select places.