The HHS rhetoric gives the impression that ME/CFS is currently handled by genral practitioners. As far as I know CFS is actually supposed to be handled by rheumatologists. Whether we agree that rheumatologists should handle this or not, the fact remains that the HHS is trying to maneuver this illness so it is not in the hands of specialists, and therefore needs a simple criteria. As part of my effort to discredit the HHS, this is a powerful point I can make. But my only source for this is what every doctor tells me who they are told to refer to. And a few more I cannot find now.
Do any of you know where it is established that rheumatologists are the specialty that handles CFS.
The few studies out on who US physicians refer to for CFS show that if they refer patients to anyone, it's usually physical therapy, psychological/ psychiatric-oriented groups and sometimes, infectious disease/ neurology/ or rheumatology. Rheumatology referrals likely happen not because they have any specific knowledge of ME/CFS but because
-- A lot of ME/CFS patients are younger women and autoimmune diseases, which have chronic fatigue as an early presenting symptom, need to be ruled out
-- Some patient have FM and some rheumatologists manage that condition or are interested in it
-- Some physicians think FM and CFS are the same illness (although there is evidence pointing to the fact they are not) and so per prior point, refer to Rheum
-- Some Rheums have additional training in allergy/ immunology
In the whole scheme of things, if ME/CFS turns out to have major autoimmune components, Rheum is not a bad specialty to have take care of us because they do deal with many autoimmune conditions (lupus, rheumatoid arthritis, autoimmune vascular conditions, Sjogren's, etc.) and are familiar with immunomodulating drugs like rituximab.
However, no patient should ever be without a good generalist - whether family medicine/ pediatrics/ internal medicine, etc. Few specialists will want to take on all medical issues of a patient outside of their specialty and someone needs to coordinate care. Many patients seen by specialists for a specific medical condition continue to have a generalists.
A good generalist also makes sure the specialists are talking to one another, advocates for the patient's overall care (e.g. help prioritize which issues get handle first, address preventive health, etc.), and assures medications/ treatments don't clash. Part of my bias is I'm a generalist at heart (although I also have a specialty background) and in the US, generalists don't get enough credit from anyone praise-wise or money-wise for what they do. Insurance companies don't pay or pay much for the activities generalists do and patients need like spending time explaining things, talking to families, talking to multiple specialists to coordinate care, etc. In fact, multiple reports conclude that the US is behind other countries on many health indicators because of the lack of and continuing decline of generalists. These forces are also behind the rise of concierge medicine in the US where some generalists are now charging patients extra for these services.