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Finding a physician to make a proper and accurate diagnosis of ME/CFS

To obtain a proper and accurate diagnosis of ME/CFS, patients must have a physician who is sufficiently informed about the illness to make a proper and accurate diagnosis. Ideally s/he must be familiar enough with the 2003 Canadian and the current CDC definitions to apply them capably and correctly. So not only must the physician be able to diagnose ME/CFS, s/he must be a good diagnostician in terms of making differential diagnoses of neurological, endocrine, cardiovascular, and in some cases, psychiatric illness. Hence, a general practitioner may wish to consult one or more specialists.

Because ME/CFS is an illness about which physicians are still not sufficiently educated, patients must try to educate themselves to decrease the chances of misdiagnosis.

Occasionally the physician may be fairly well informed about ME/CFS and about how to diagnose the illness. In this case, the patient may be able to receive a proper diagnosis within a reasonable period of time. Unfortunately, experience shows that many doctors, both primary care physicians (PCPs) and specialists, are not yet well-informed about the illness, and so obtaining a diagnosis may take longer and be more difficult. The same is true about treatment and management; that is, the physician may be able to diagnose ME/CFS, yet not know how to manage it.

Many PCPs will be open-minded and will be willing to learn about the illness, especially if the physician knew the patient as a healthy person. In this case, the patient can give the doctor the 2003 Canadian and/or the current CDC definition (based on the 1994 definition), along with a few other medical or informational articles. The patient must be selective in the amount of material s/he gives to the doctor, since doctors are busy.

The doctor may consult with a colleague who knows more about the illness. If a PCP is confident in his or her ability to learn about the illness, s/he may make at least a tentative diagnosis of ME/CFS. If the doctor expresses uncertainty about knowing enough about ME/CFS for diagnosing, or seems unwilling to learn more about it, then request a referral to a physician more informed about the illness.

A specialist who is unfamiliar with ME/CFS can make a misdiagnosis as well as any other physician. Such misdiagnoses can often lead to many months of difficulty and, perhaps, improper treatment. To the extent possible, it is best to avoid these discouraging and painful detours that result from misdiagnosis. (Please see the section on Differential Diagnoses, and don't be shy in providing the linked articles or printouts to either a PCP or specialist, if appropriate.)

For more tips, see our section Working with your Health Care Provider . For assistance in finding a health care provider knowledgeable about ME/CFS, please contact us by phone or email.