What to do if a doctor insists "nothing" is wrong

Unfortunately, some patients have found that a previously concerned, friendly and helpful PCP may be less than helpful with an ME/CFS diagnostic process. The same can occur with any other doctor.

After an initial work-up, the PCP may say that s/he really can't find anything wrong, that the lab tests seem to be normal, and that the patient just really needs to rest, and then can resume a normal routine.

The patient may try this but finds it impossible because of the continuing symptoms, goes back to the doctor and reiterates the symptoms. The doctor begins to sound like a broken record while telling the patient "there is really nothing wrong." Both the patient and doctor can become very frustrated with this process. However, the patient must be persistent in reporting the symptoms to the physician.

What makes the situation especially difficult is that there are definitive, objective tests that show abnormalities in ME/CFS, but they are only done in a research setting—such as testing Natural Killer cell function or the RNase-L level in cells. Standard tests done in an illness work-up usually come back "normal" in ME/CFS, or just a little "off." (See Dr. Komaroff's article " The Physical Basis of CFS. ")

The doctor may become more distant and less friendly. S/he may imply the patient isn't physically ill; may state that the patient is under too much stress or have emotional problems and s/he may refer the patient to a psychiatrist. The doctor, rather than honestly expressing a lack of understanding, may begin to insist that as a doctor, s/he is in the best position to know what is going on.

Two things may be happening. First, when a doctor can't find anything physically wrong, the default clinical position is often that the illness might well be psychiatric.

Second, some doctors are overly concerned about being in control. So rather than admitting they cannot determine what is wrong, they need to feel they can make an actual diagnosis. Thus if the doctor can find no "objective" evidence (other than the sick patient in front of him/her), then s/he may conclude that the illness is psychiatric or due to "stress".

If this is the case, then the patient will clearly have to find another doctor who is informed and experienced enough to make a careful and objective diagnosis.  If the patient is finally diagnosed properly—whether the diagnosis is ME/CFS or not—then the patient will have to decide whether s/he can still work with the PCP. Perhaps, after another, better-informed doctor makes the correct diagnosis, the PCP will accept the diagnosis and be willing to again engage in a genuinely helpful patient/doctor relationship.

Some patients find that their PCP is very good for routine and other medical issues, while at the same time they see a better-informed physician for ME/CFS treatment. However, this is not the best arrangement, since ME/CFS cannot be separated from the patient's overall health. Should another illness develop, only a doctor who is keeping up with the patient's entire clinical picture is in the best position to recognize a new and separate problem.