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.
