Finding A Doctor

The Centers For Disease Control (CDC) estimates that only about 20% of chronic fatigue syndrome patients have been diagnosed and while many physicians now know about chronic fatigue syndrome (ME/CFS) many don’t know specifically how to diagnose it.

Finding a Knowledgeable Doctor. Because doctor’s knowledgeable in chronic fatigue syndrome (ME/CFS) are still rare it’s important that people who believe they may have this disease find one. Some patients spend exorbitant amounts of money being sent from specialist to specialist before they are finally diagnosed. While a diagnosis can be somewhat complicated the CDC believes this kind of long drawn out process is unnecessary:

“CFS can be diagnosed in a primary care setting. Referring patients to various specialists just to confirm a CFS diagnosis is costly and unnecessary”

Peter Rowe, M.D. Johns Hopkins Medical School.

Fortunately, chronic fatigue syndrome (ME/CFS) physicians report that once one becomes familiar with the disease it’s easy to recognize; no other disorder presents such a dramatic combination of physical and mental fatigue, sleep and concentration problems, etc..

Chronic fatigue syndrome (ME/CFS) physicians can often be found by contacting a local support group for information. The CFIDS Association of America provides a lists of CFS support groups on its website and the Phoenix Rising Forums are a good sources of information. Check out a list of well-known ME/CFS doctors on our website. C0-cure has the largest (sporadically updated) list of patient recommended doctors on the internet.

The Fibro-Fatigue Centers - Modeled on Dr. Holtorf’s protocol the Fibro-Fatigue Centers were created by a business who recovered under Dr. Holtorf’s care. Dr. Teitelbaum, a well-known physician and author became their national medical director in 2006.

Holistic Health Physicians – An increasing number of M.D.’s utilize both traditional and alternative therapies. Every major city and many smaller ones contain ‘holistic’ health oriented M.D.’s who are well acquainted with ME/CFS. The American Board of Holistic Medicine may be able to help you find one in your area.

Dr. Teitelbaum’s Computerized Personal Treatment Program – For a modest fee you can create your own personalized treatment program based on Dr. Teitelbaum’s protocols. Two programs are possible; a more expensive long form you can use to educate your physician about your case and a less expensive shorter form for your use.

You simply fill in medical history and symptom forms and lab test information and the computer does the rest. You will be provided with a list of probable factors that may contribute to your illness and a list of natural and prescription remedies that may be helpful.

Finding A Physician / Before The Visit / Assessing Your Physician / Educating Your Physician / Treatment Intro

angieishere44 February 22, 2013 at 11:09 am

I just came from the CFIDS Website and there is NOT 1 link for Dr.’s, resource list, nothing about Dr.’s who treat this disease at all!

tony earnst March 20, 2014 at 6:12 am

Over the last 4 years, i have written the CEO about 4 times expressing the great need for a list. I have NEVER received a response from them. It is a JOKE and i have quit giving to them.

angieishere44 February 22, 2013 at 11:18 am

If I could afford a private hospital, which is the Fibro and Fatigue Center is, I wouldn’t need an online forum because my over-priced Scottsdale dr. would have recommended them already.

Bev April 11, 2013 at 12:36 am

9years my daughter has been ill with M.E. there’s just no help, no specialist to see in the UK at all. Does anyone know of any one who can help her……..

sonicthoughts April 25, 2014 at 12:46 pm

I don’t get it. WHY wouldn’t this board have a list of doctors!

Joanna April 11, 2015 at 5:35 pm

I wonder if the ME specialists who sometimes respond to people on this site, or activists in the UK who have any persuasive ability or knowledge can speak to this dreadful situation of no care for NHS patients in the UK.

I feel there is more of a need here and on other ME/CFS websites to include and recognise people who are poor, have no resources, no family or close friend able to help, no transport, little or no care, and do not even live near a doctor who treats this illness as a real one.

I am just retirement age, alone, poor, almost totally bedbound, have been steadily deteriorating for 8 years, and can’t even get an NHS GP to address my angina and orthostatic intolerance, for a start.

They will take nothing I say or ask them seriously since I have a Fibromyalgia diagnosis, and and because I will not go to the local Rheumatologist who studies and treats ME as a psychosomatic illness from which patients supposedly recover through CBT and GET.

I have looked at any lists seen here and elsewhere. I think this part of your information misleads people (and then lets them down) by making it sound as though there are actually some doctors in most first world countries who treat ME/CFS. Also the some of the links lead to dead ends instead of currently functioning web pages.

Maybe it should indicate countries in which there are only very few and those are in private practice, and even some of those who treat ME are being called up before the medical council following complaints.

I have looked in the lists for England, and find no NHS doctor whatsoever. The very few listed are in the exclusive Harley Street in London–almost certainly extremely expensive or they would not practice in that location, or possibly one or two private practice alternative medicine doctors elsewhere very far from me.

It would appear that in most places in the world, if there are some specialists, only wealthy people are able to get testing and treatment for this illness, unless they want to be sent for CBT/GET and treated as a person with an emotional/psychosomatic illness.

I have been asking in every forum I can find for the last several months. I live in a city area in Southwest UK and there is no doctor listed anywhere near me. My children are in the US in Kansas, and I have searched every state bordering or nearby state to them (central US in a large city) to find not one listing of a CFS/ME specialist anywhere close. Not even in Chicago or Denver, which would be a minimum 2-day trip with me needing someone to accompany me and push me in a wheelchair.

And that is assuming I could come up with enough money to move to Kansas to live with my children (several thousand pounds I do not have). My children have not invited me and I would lose my housing in the UK, and be going to a place where I would likely not receive the benefits I get here–all huge issues for someone almost completely bed bound.

I am so discouraged I have no idea where to turn at this point.

LAM015 June 28, 2015 at 1:59 pm

in Utah the best Dr. & researcher is Lucinda Bateman. If everyone would submit Dr. ‘s that are fantastic & not quacks, maybe with enough submissions, a list could be formed for every state or city!

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