The visit to a doctor is one of the more problematic areas of myalgic encephalomyelitis (ME/CFS).
It’s often a time of high drama; your health has fallen apart and you want answers. Many physicians, on the other hand — hit with a barrage of symptoms they don’t understand — simply don’t have any answers. Often, either they don’t know a lot about what ME/CFS is — or what they know is wrong.
At this point, a frustrated and scared myalgic encephalomyelitis patient meets a frustrated and confused physician. The stage is set for problems.
Finding a Doctor
There are two types of doctors who may be able to help:
- Those who will be willing to provide a diagnosis of ME/CFS but don’t have the knowledge to treat it.
- The small minority who diagnose and attempt to treat ME/CFS (with mixed results since the response is so individual).
Both types of doctors can be helpful, as long as the doctor is willing to listen to the patient and learn as they go.
If you are still uncertain whether you truly have ME/CFS, then a useful approach is to first look for a doctor that can help you rule out conditions that share many symptoms with ME/CFS. If the doctor determines that you meet the criteria for a ME/CFS diagnosis, you can then consider looking for a ME/CFS specialist.
However, be aware that specialists often have very long waiting lists, can be expensive, and unfortunately may not have any more helpful information than you might be able to find on your own.
U.S. ME/CFS Clinician Coalition — This site provides doctors with information on the diagnosis and management of ME/CFS. It’s very useful if you have a doctor who is willing to use it as a starting point.