ME/CFS doctors: How to find them

Pyrrhus

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Where are the ME/CFS doctors?

Everyone wants to know where the best ME/CFS doctors are. Unfortunately, there are very few doctors that specialize in ME/CFS. Some organizations have put together lists of doctors, but these lists become outdated very quickly. Before you go looking for an ME/CFS doctor, first consider whether or not an ME/CFS specialist would be helpful for you.

There are two types of doctors who may be able to help: 1) those who will be willing to provide a diagnosis of ME/CFS but don't have the knowledge to treat it, and 2) the small minority who diagnose and attempt to treat ME/CFS (with mixed results since response is so individual). Both types of doctors can be helpful, as long as the doctor is willing to listen to the patient and learn as they go.

A useful approach is to first look for a doctor that can help you rule out conditions that share many symptoms with ME/CFS. If the doctor determines that you meet the criteria for a ME/CFS diagnosis, you can then consider looking for a ME/CFS specialist. Be aware that specialists often have very long waiting lists, can be expensive, and, unfortunately, may not have any more helpful information than you might find right here on Phoenix Rising.

Resources:

And, of course, you can search Phoenix Rising for information on specific doctors or specific geographical areas:
  • Although there is a search link found near the top-right corner of each page, our Google Site Search can sometimes return more relevant results.
  • However, note that the search link found near the top-right corner of each page searches the entire discussion forum, but the Google Site Search only searches public posts, excluding any posts that are viewable only by members.
  • We recommend trying the Google Site Search first, then the built-in search found near the top-right corner of each page.

If someone finds other resources for finding doctors, please post them in this discussion.

Best wishes to your health! :heart:
 
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Which ME/CFS doctors do and don't put in the records the details showing how each of the diagnostic criteria requirements for ME/CFS and MCAS are met, and which gloss over that part and leave out necessary data that prove the criteria point by point, leaving the patient subject to a future of going right back to the disappearing illness or misdiagnosed illness status?
 

livinglighter

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There are also some specialist doctors that simply express an interest in fatiguing illnesses and chronic fatigue.
Such as Dr A Lulsegged and Dr N Gall.
 

Learner1

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There are many Bastyr trained naturopathic doctors as well as IFM trained functional medicine doctors who can be very helpful in addressing ME/CFS problems.
 

SnappingTurtle

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Which ME/CFS doctors do and don't put in the records the details showing how each of the diagnostic criteria requirements for ME/CFS and MCAS are met, and which gloss over that part and leave out necessary data that prove the criteria point by point, leaving the patient subject to a future of going right back to the disappearing illness or misdiagnosed illness status?
I felt Dr Lapp wrote up a very thorough and medically supportive summary of my history and progression of my ME/CFS symptoms. He wrote excellent letters of support for my disability claims and cited which of my symptoms met ME/CFS criteria and other co-morbidities. His 2 day cpet report was instrumental in my disability claims.
 

Learner1

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