LINKS TO SHARE WITH YOUR DOCTOR
Informational Links
Sheet to give ER Doctor:
Bateman Horne Center ER and Urgent Care Considerations sheet
Resources for Medical Providers Caring for People with Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome (U.S. ME/CFS Clinician Coalition) https://mecfscliniciancoalition.org
Handout to give to your Doctor
Form to fill out and have handy for ER and Doctor Visits.
What kind of doctor can help me?
ME/CFS fits into a number of categories and a number of specialists may be able to help you if you can't find a ME/CFS specialist. Or it could be a great General Practitioner.
Most of the clinics are run by infectious disease experts. People (including me) seem to have the worst luck overall with neurologists being super dismissive and "it's all in your head", but there are exceptions of course.
The main thing is finding a doctor who is up on the latest research and is a strong advocate for you or is willing to learn.
BEWARE OF SCAMS
Anyone claiming they can "cure" you at this stage is a scam. There is no cure. There are experimental off-label medications which have helped many, but none which are approved yet. There are management strategies, but no cures.
Signs of scams:
Talking to Doctors (my under 5 minute youtube videos on it). talking to doctors.
How to talk to your doctor. (The American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society)
My take:
First, know that diagnosis is a process of elimination- their job is to 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. Refer them to the links above.
Finally, make sure they understand ME/CFS is a biological condition and not a psychological one. Be aware that if your doctor or neurologist has heard of ME/CFS, they may be behind in what they were taught. The old flawed research had ME/CFS as a psychosomatic ("it's all in your head") condition, not helped by the fact that more women get it than men and statistically speaking 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 years now) . More on this and links to research on the PACE study in the Treatments section.
New research shows that exercise is harmful to people with ME/CFS. DO NOT LET THEM FOLLOW THIS COURSE OF TREATMENT. Find another doctor if you need to.
Treatment Harms To Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Instead, show them the new guidelines and research (links above).. ME/CFS 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
The best clinics I know of are Stanford (CA), Dr. Nancy Klimas (FL), and Dr Susan Levine (NYC).
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 ME/CFS Clinician Coalition
List of doctors across the US who treat ME/CFS, along with their recommendations to doctors on treatment. *not always up to date
ME/CFS CLINICS and RESEARCH CENTERS *in progress*
Stanford ME/CFS and Long Covid Clinic (Palo Alto, CA) (clinic and research center- separate)
Dr. Chia (Los Angeles) (practice)
Dr Nancy Klimas at the Center for Neuro-Immune Medicine (Florida) (clinic and research)
The Bateman Horne Center (Utah) (Clinic and Research)
ME/CFS Clinic Minnesota (serving Minnesota, Iowa, Wisconsin, South Dakota, Alabama, Louisiana, and Ohio). Clinic.
Dr Salvato in Houston, Texas (doctor)
Dr. Lori Nelson-Madison in Lynchburg, VA (doctor)
Harvard together with Brigham and Women's Hospital and others (Boston) (research center)
The Chronic Fatigue Initiative at Hutchins Family Foundation headed by Dr. Susan Levine (NYC) (clinic and research)
Columbia (NYC) (research center)
NOTE ON MAYO CLINICS:
They were very slow to adopt the CDC's new guidelines (changed around 2015-16?) accepting ME/CFS as a medical and not psychological condition. Mayo changed their official stance sometime around 2020, but many Mayo clinics are STILL prescribing variations on GET despite what the main MAYO ME/CFS page now says about it.
Approach with caution. I still hear people getting prescribed GET (graded exercise therapy mentioned above) there. Don't be afraid to show them their own webpage. I haven't heard anything great about Mayo but I do hear that people trying to get an official diagnosis often get it there. After that they may be able to persuade their GP to try some of the available treatments.
GETTING DISABILITY (in the US)
https://www.cdc.gov/me-cfs/resources/disability.html
Potential Doctors in Western United States (pdf)
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