How to Get Diagnosed with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome

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Getting a diagnosis of Myalgic Encephalomyelitis or Chronic Fatigue Syndrome is not always a simple process. Many of our readers report that they had to either educate their doctor about how to diagnosis this condition, or travel to another area to visit a specialist, or visit multiple new doctors before finding one who was able and willing to diagnosis them.

If this happens to you, don’t give up hope. Most people find they are eventually able to find a supportive doctor.

What Type of Doctor Should I Go To? 

 General Practitioner – Most or our readers report being diagnosed by their primary care physician or family medicine doctor. These doctors may not know very much about ME or CFS and sometimes people got a diagnosis by bringing their doctor a list of the criteria (see below) and reviewing it together. Some patients switched primary care doctors several time before finding one that was able/willing to diagnose them.

 Specialists – There is no specific field or medical speciality that diagnoses ME. Any doctor can diagnose you, if you find one who cares and is willing to listen. Some readers report getting diagnosed by a neurologist, rheumatologists, infectious disease specialist, or other specialist.

 Integrative Medicine – Some readers report that they found their best help from an Integrative Medicine Doctor or a Naturopathic Doctor or a Functional Medicine doctor. Unfortunately, it is not always possible to find a doctor like this who can accept insurance. In addition, if you are applying for Social Security disability, it may be helpful to keep in mind that Social Security does not recognize naturopathic doctors as “acceptable medical sources”

 ME or CFS Specialists – Some doctors are referred to as “ME Specialists.” This term is slightly misleading, as this is not a licensed area of medical specialty. However, there are doctors who do have special knowledge and training with ME, and special interest in treating ME patients. These doctors are sometimes expensive or far away, but if you are lucky enough to be able to go to one, here are some places to find one: #MEAction list of doctors and Colleen Steckel’s list of doctors.

 ME Clinics – In the UK there are special clinics that focus on ME. Although this sounds great, many of our readers report bad experiences. In the past, most of these clinics supported Graded Exercise Therapy. As there continues to be more documentation and research showing the dangers of Graded Exercise Therapy, many clinics are now changing their practice and no longer offer Graded Exercise Therapy. Our readers report that clinics that have stopped practicing GET may not have a lot of other options to offer. Perhaps this will change in time. Stay tuned!

 If You Are Applying for Disability (US) – We asked people who were approved for disability in the US to share the name of: What doctor was the most helpful?. Also take a look here: How to Find a Doc to Help With Disability

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