The American Myalgic Encephalomyelitis and
Chronic Fatigue Syndrome Society on how to talk to your doctor: https://ammes.org/how-to-talk-to-your-doctor/
First thing to show your doctor: https://y9ukb3xpraw1vtswp2e7ia6u-wpengine.netdna-ssl.com/wp-content/uploads/2015/05/Diagnosing-and-Treating-MECFS-_V1-Final.pdf
Website for your doctor: https://mecfscliniciancoalition.org/?fbclid=IwAR0JQ53Kj48c3ZlvOCaw_wZFSfPTieSOj4oWVRV-S3jOM50twXFUK78L8Jw
At the bottom of this page is a handout you can email your doctor to give them a better understanding of current research on CFS/ME and how to help you. Also show them the links at the top of the page.
What kind of doctor?
CFS/ME fits into a number of categories and a number of specialists may be able to help you if you can't find a CFS/ME specialist. Or it could be a great General Practicioner. The main thing is finding a doctor who is up on the latest research and is a strong advocate for you.
My take:
First, test for everything else, including Lyme and various neurological issues.
Next, know that most doctors are unaware of CFS and won’t think of it for a diagnosis.
Finally, make sure they understand CFS/ME is a biological condition and not a psychological one. Be aware that if your doctor or neurologist has heard of CFS/ME, they may be behind in what they were taught. The old flawed research had CFS/ME as a psychosomatic ("it's all in your head") condition, not helped by the fact that more women get it than men and doctors don't take women as seriously.
This belief is because of a deeply flawed and now debunked study called PACE. They moved the measure of “success” during their study so that patients could actually get worse under the treatment and be called “cured”. The participants in the study had a four year lawsuit to get the data released so this could come to light.
Links explaining the flawed PACE study:
https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/
The PACE study concluded that “cognitive behavioral therapy and graded exercise” was the cure. If you hear those words, know that your doctor is basing their treatment on old, flawed research. Unfortunately the Mayo clinic took a long time to come around and has only halfheartedly, recently dropped the PACE study recommendations (unlike Harvard, Stanford, Columbia, the CDC, NIH, etc. who have been actively pursuing the biological causes for several years now) . More on this an links to research on the PACE study in the Treatments section.
New research shows that exercise is generally harmful to people with CFS/ME. DO NOT LET THEM FOLLOW THIS COURSE OF TREATMENT. Find another doctor if you need to.
Instead, show them the new data. CFS/ME has been proven by various institutions around the world to be a biological disease, not a psychosomatic one. Stanford is foremost among these.
FINDING A DOCTOR
https://ammes.org/physician-and-clinic-database/
Doctors in the Western United States who see patients with mitochondrial diseases database pdf is linked at the bottom of the page.
The CFS/ME Clinician Coalition
List of doctors across the US who treat CFS/ME, along with their recommendations to doctors on treatment.
CFS/ME Clinics and research centers *in progress*
Stanford (Palo Alto, CA)
http://med.stanford.edu/chronicfatiguesyndrome.html
Dr. Chia (Los Angeles)
https://me-pedia.org/wiki/John_Chia
Harvard together with Brigham and Women's Hospital and others (Boston) https://www.omf.ngo/collaborative-research-center-harvard/
Columbia (NYC)
https://www.publichealth.columbia.edu/research/center-infection-and-immunity/center-solutions-mecfs
GETTING DISABILITY (in the US)
https://www.cdc.gov/me-cfs/resources/disability.html
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