How to Get Diagnosed with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome

Art: Elizabeth D’Angelo

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

Working With Your Doc to Get Diagnosed

🌷 Read the ICC – The International Consensus Criteria for Myalgic Encephalomyelitis was prepared by a panel medical clinicians and research scientists from around the world.  This can help you get an understanding of ME symptoms and diagnosis: How Do I Know if I Have ME?

🌷 Bring your doc the ICC – You can bring your doctor a copy of the Full text of the International Consensus Criteria and ask her to review the symptoms with you to see if she agrees that you meet this criteria. If your doctor doesn’t want to read something long, you can print and bring just the Assessment and Diagnostic Criteria

🌷 Bring your doc the SSA Ruling – If you are applying for disability in the US, you can bring your doctor a copy of the Social Security Ruling for Chronic Fatigue Syndrome and ask her to review the symptoms with you. See if she agrees that you meet this criteria. Here’s the full text and here’s something shorter you can also print and bring: Social Security Ruling Diagnostic Criteria.

🌷 Get Tested – There is no definitive test for CFS or ME and most people are not diagnosed based on testing. However, if you would like to get some testing, check out: How to Get Tested for ME and CFS. If you are applying for disability in the US: What Medical Tests Should I Get While Applying for Disability? 

🌷 Get Exclusive – Many people get diagnosed by excluding other conditions. They get tested for other conditions, and once everything else is ruled out, their doctor diagnosis ME or CFS. Examples of illnesses that can be ruled out: Addison’s  disease, Cushing’s Syndrome,  hypothyroidism, hyperthyroidism, iron deficiency, sleep disorders, lupus, Multiple Sclerosis, B12 deficiency, Lyme Disease, and psychiatric disorders.

🌷 Learn from the pros – Great stories and strategies from readers: How I FINALLY Got a Diagnosis of ME/CFS

🌷 Keep trying – Some people get diagnosed by going to a million doctors until finally finding someone who will listen. Don’t give up. It’s possible.

🌷 Or don’t keep trying – Some people can’t access a knowledgable or helpful doctor and decide to let go of the idea of getting diagnosed. They read the ICC themselves and know in their heart that this is what they have.

Other Conditions

🌷 Consider Lyme – Some people with symptoms of ME and CFS discover that their symptoms get better by treating for Chronic Lyme Disease. If you think you might have Chronic Lyme Disease, it is highly recommended that you get an IGENEX test, as many Lyme doctors and patients believe that standard Lyme tests are not accurate. Lyme Disease Symptom Checker.

🌷 Consider Mold – Some people with symptoms of ME and CFS discover that their symptoms get better by practicing Mold Avoidance. Learn more about Mold Avoidance. Also check out Julie Rehmeyer’s Amazing Story.

🌷 Other Conditions – Other conditions that sometimes occur with ME and may be worth looking into: Fibromyalgia (causes widespread pain), SIBO (causes digestive problems), Mast Cell Activation (causes food and allergic reactions), Multiple Chemical Sensitivities (causes reactions to synthetics), POTS (causes increased heart rate, dizziness, or fainting when standing), EDS (loose or hyper-mobile joints, extendable skin). Here’s where you can find Great Facebook Groups for Invisible Illness

Treatment

🌷 Treatment – There is no official, recognized treatment for ME, though some people do find ways to improve. Here are two extensive guides put together by patients: ME/CFS Treatment Resources by Cort Johnson and HIP’s Roadmap for Testing and Treatment.

🌷 Pacing – Some people report improvement through rest and practicing a technique called pacing or Pacing with a Heart Monitor.

🌷 Exercise – Some doctors recommend exercise or Graded Exercise Therapy or increasing your activity levels. If your doctor is making this recommendation, it is possible that she may not be aware of the latest research and developments in this field. This page includes stories from patients, along with scientific research and articles: Potential Dangers of Exercise and Activity for People with ME

Next Steps 

🌷 Find your peeps. Here’s where you can find Great Facebook Groups for ME, CFS and Invisible Illness

🌷 Stay informed. Cort Johnson and Health Rising provide a wonderful website and email newsletter that can keep you informed on all the latest developments for ME/CFS patients and practitioners. Health Rising: Finding Answers for ME/CFS

🌷 Get in on the Action. #MEAction is an international network of people with ME. You can participate in many of their projects from bed. Get involved in advocacy, arts, social justice, advocating for funding, and connecting with others online. #MEAction Health Equality for ME

🌷 Live Like a Spoonie – Some people with ME call themselves “Spoonies.” What’s a Spoonie?

🌷 Save Spoons – Here is a long list of tools and ideas that may make your life easier and better: How To Save Spoons.

🌷 Be Careful – Many of our readers report that when they first got diagnosed, no one warned them about the potential dangers of physical activity and exertion. Luckily you are here reading this, so this won’t happen to you: How Did You Get Others to Understand That Activity Makes You Worse?

Thanks for Reading

🌷 This page is part of the free online guide: How To Save Spoons: A Self-Advocacy Guide for ME/CFS

🌷 Art on this page by Robin Mead and Elizabeth D’Angelo.

🌷 Page Updated: 8/1/19

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