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EMilo, I;m not really sure what kind of doctor I need. I just found out I can self refer on my company's new insurance plan, so I can eliminate my doctor for that part. I guess someone that can actually diagnose if I truly have CFS, or if I am just chronically fatigued. But then, what does it truly mean to have a CFS diagnosis? Is it viral? Do I need a muscle punch? I guess I am stumped at the wide possibilities of causes.
Hi Strawberry,
Maybe your nurse relative can help you narrow down what specialty you want to see first. Though many specialists will not see you without a referral (and possibly appropriate bloodwork or at least chart notes showing a need to be there), so you might still have to solve your PCP problem.
Until we have settled on some agreed diagnostic markers for ME, you have to first rule out other likely problems, anyway, and at the moment any other diagnosis on the planet has more credibility (outside of patient circles and those few rare docs) and most are more treatable just at present.
If you want to rule in or out an ME diagnosis, the closest specialists I think are Andy Kogelnik, Lucinda Bateman, José Montoya, and John Chia. They all have wait lists. Of course if you can travel, there is nothing to prevent going farther, such as to Nancy Klimas' associate (forgot her name) or to Derek Enlander.
ME/CFS has immune dysfunction and neurological features. It is most likely a group of related diseases (as asthma, Lupus, etc., are) rather than being one thing with a single cause and single treatment. It often is associated with infectious onset but it is not clear whether infections are related to cause, and not everyone has chronic or reactivating infections, though some do.
You should do what makes sense to you.
If you do get a CFS diagnosis from someone who is qualified to make and manage that diagnosis, this should come with some idea about what the doctor thinks is contributing to your symptoms in your particular case (e.g. infections, dysautonomia, insufficient sleep quality...), and some suggestions for treatment (at least sensible symptom management and treatment of any complicating or comorbid conditions like dysautonomia, migraine, or asthma).
You will find the PM section at the top, under the heading, "Inbox". (used to be "Conversations" but they must have changed it). You should have a red number now, as I have sent you a message (just saying how to find the invitation--at the top of the My Groups page).
