Thanks for giving us a clinician's viewpoint
@Butydoc, makes sense - busy practice, needs easy, quick tools. Do you think the patient would then need to be referred to a SEID specialist, or is there enough here for any physician to treat and manage SEID? I would think physicians would still be scared away of managing such a complex illness, and the patient would probably fare better at least seeing a real trained specialist at least initially...
As someone who worked in primary care (and also later acquired a specialty so I've seen it on both sides), the places I trained taught that a good primary care doc should be able to handle 95% of all illnesses, even complex ones, to some extent. The 5% are those rare diseases where they are so odd, the person should be referred fairly quickly to a specialist. As far as we know, SEID, ME, CFS, etc. are not rare illnesses so generalists need to learn about them too.
A good doc should not be "scared" or intimidated; it's a challenge to keep up with the medical literature but SEID is not first complex disease that generalists have had to deal with. It's only because there's been so much confusion over how to diagnose and how to treat and the stigma of the illness, that so many people have problems finding a knowledgeable doc.
Ideally, the role of the primary care physician in SEID should be no different than the role they now serve for people who have other complex illnesses, e.g. multiple sclerosis, congestive heart failure, rheumatoid arthritis, breast cancer, etc. -- conditions which my patients had. Aside from the low supply of specialists, we should not let primary care docs off the hook so easily! Many of the symptoms -- e.g. sleep, pain, even orthostatic intolerance -- are within the regular scope of what generalists could manage or learn to manage. Pacing to help PEM is similar to "energy conservation/ activity management" which is used to manage activity-related fatigue and other symptoms in illnesses like arthritis, MS, cancer. It's true that specialists handled the more complex aspects of treatment for my primary care patients -- like immunomodulators for MS or chemo for breast cancer -- and appropriately so but there are basic issues that all generalists should still be able to address.
The analogy for SEID is that while, for example, the generalist can start with basic assessment/ treatment for symptoms (sleep, pain, etc.), educate about the illness (e.g. what PEM is), and give advice about activity, the specialist might give more complicated treatments, like rituximab or long-term antivirals. The other roles generalists can serve are to continue to monitor the patient's other health conditions, send referrals to and coordinate care among different specialists as needed (e.g. stomach docs for gut issues), and assure patient's medications do not interact.
Many people in the US believe that specialists are all you need for your care but in fact, generalists and specialists serve different, although symbiotic,roles. I've been in the position of being the generalist for people who have seen only specialists for years; in some cases, I've found that their medication lists included multiple drugs that interacted with each other because no one was there to monitor care among the different specialists.
I'd also add that the line between specialists and generalists can be blurred. Some of our best docs for this illness are generalists -- Peterson, Bateman, Rowe, Enlander -- but they are now specialists for this disease because they made it their job to learn as much as they could about a specific illness.
