Somebody asked me the following question and gave me permission to share it. Feel free to send me a direct message, if you prefer --- Hi Tom, I was wondering if you know any excellent doctors/consultants in the US or elsewhere that would take patients from overseas and do online consultations. I thought it might be a good time to arrange an appointment as they may be more open to doing an online consultation due to covid. I've recently been reading 'Reviving the Broken Marionette' by Maija Haavisto and I was particularly impressed by the likes of Dr Jay Goldstein. Not sure if there's anyone in his league still practicing. There are so many medications to try (as in this book for example) that it's hard to know where to start which is why it would be very helpful to get an expert opinion. ---
I am happy to give an expert armchair professorial opinion in the abstract. My opinion is that the best advice comes from free debate amongst patients on S4ME. There are no physicians who are better equipped with the scientific information than Monsieur Tack or SeƱor Snowlepard or Dr Wooly and a dozen more.
If I recall correctly, Jay Goldstein basically just threw medication at patients, and devised network trees or algorithms to determine what might work next, or what to add/subtract. He had is own theory of what ME/CFS was and then used medications like you would ingredients in a complex recipe. I'm sure there are other doctors in the US who do similar, but I can't recommend any! Edit: Here is a piece about his 'protocol'. To be honest he sounds like an a bit of a wildcard. https://www.prohealth.com/library/j...r-chronic-fatigue-syndrome-fibromyalgia-20871
I would love to have a personal physician who I felt had a basic (or better yet, advanced) understanding of what it is like to have ME/CFS and who kept abreast of the research. And if they had to say "we don't know" to a lot of my questions and were slow to suggest trying things that might cause harm, I'd be good with that. On the other hand, I'm almost more concerned about being under a self-appointed "expert" or guru in this illness than having a physician who is less than well informed, if such a person were quick to to treat with protocols that could do me (and others) harm. Kind of a Hobson's choice. Bill
It seems like there are two topics at hand here, 1) the original request for a doctor that can do a remote consultation, and 2) a discussion of Jay Goldstein, who from what I've read online, certainly seems like an interesting guy and worthy of attention. As for the original request that was sent to Tom -- unfortunately there seems to be a dire lack of doctors who treat our condition, and I don't know of many who will treat patients without seeing them at least once in person. However... with COVID lockdowns currently still in-place, it seems as though some are willing to bend these rules a bit. But I'm not sure if they would be able to treat you if you are in a different state or country than they are licensed in. @Hip has a map on his website of doctors, I'm not sure how up-to-date it is: https://mecfsroadmap.altervista.org/#me-cfs-doctors-map
My close friend lived in Torrance and had several CFS doctors. He also saw Dr. J Goldstein early in his illness. and described it as a 'wild experience' to say the least. He didn't remember driving home from his appointment. There wasn't one treatment that improved his health. He tried many.
The ME Trust in the UK do this service, and William Weir sees people in the UK - I haven't had contact with either.