There are only a handful of specialists and clinical centers that specialize in ME/CFS around the country. Many of them do not take insurance and most have waiting lists that can be years long. Instead of seeking out a specific specialty, many people with ME/CFS and Long Covid focus on finding doctors who are willing to be a partner in their medical care and listen to their needs.
There are several resources online that can help you make a list of potential doctors. Your initial appointment with a physician should be treated like a job interview. Write your interview questions down. Keep your list of interview questions as short as possible, without compromising your ability to make an informed decision. You have the right to expect any physician to give your concerns their genuine consideration. Download our interview question worksheet and visit our full Finding a Doctor guide here. You may need to inform new providers that the U.S. 2023 ICD-10-CM (the International Classification of Diseases) was recently updated to enable accurate tracking of people with ME/CFS, including those who develop the disease following COVID.
If you are finding it difficult to locate any doctor in your area who is familiar with ME/CFS and Long Covid, your best choice may be to work with a doctor who is actively curious about you first, and ME/CFS or Long Covid second. Visit our resource page for medical providers for information that you can share with your doctor.
You may also wish to consult the Physicians and Clinic Database created by the American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society (AAMES), which includes ratings and reviews. AAMES encourages users to leave feedback on doctors they have visited, as well as to recommend helpful clinicians through their Contact Form.
Many people with Long Covid focus also on finding doctors who are willing to be their partners in their medical care and listen to their needs. For individuals looking for resources specific to navigating Long Covid care, check out this article from Solve M.E. Board Member, Cynthia Adinig.
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