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Cfs-me-navigator

Cfs-me-navigatorCfs-me-navigatorCfs-me-navigator
  • Home
  • About and Resources
  • Symptoms
  • Doctors
  • Treatments
  • Podcasts Videos & more
  • Covid and CFS/ME
  • travel with CFS/ME
  • Library
  • My Story

Talking with your doctor (and finding one)

How to talk to your doctor. (The American Myalgic Encephalomyelitis and  Chronic Fatigue Syndrome Society)


LINKS TO SHARE WITH YOUR DOCTOR


  • Diagnosing and Treating MYALGIC ENCEPHALOMYELITIS/ CHRONIC FATIGUE SYNDROME (ME/CFS) (U.S. ME/CFS Clinician Coalition)


  • Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management (Mayo)


  • Resources for Medical Providers Caring for People with Myalgic
    Encephalomyelitis/Chronic Fatigue
    Syndrome (U.S. ME/CFS Clinician Coalition) https://mecfscliniciancoalition.org/?fbclid=IwAR0JQ53Kj48c3ZlvOCaw_wZFSfPTieSOj4oWVRV-S3jOM50twXFUK78L8Jw


  • CDC Website for ME



What kind of doctor can help me?  

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.  Refer them to the links above.


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 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/


https://www.npr.org/sections/health-shots/2017/10/02/554369327/for-people-with-chronic-fatigue-syndrome-more-exercise-isnt-better


https://www.npr.org/sections/health-shots/2015/11/04/454335755/chronic-fatigue-syndrome-research-gains-funding-and-controversy


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 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 guidelines and research (links above)..  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.

https://y9ukb3xpraw1vtswp2e7ia6u-wpengine.netdna-ssl.com/wp-content/uploads/2015/05/Diagnosing-and-Treating-MECFS-_V1-Final.pdf



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




PDFs

Potential Doctors in Western United States (pdf)

Download

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