ME/CFS - One Patients Perspective

Your symptoms can't be that serious - the tests are O.K.

As a patient what motivated me going to the doctor is my symptoms and their effect on my life. From my point of view they are the only thing that counts irrespective of the ability of current medical technology to detect what exactly is wrong with me. I have always been struck how many physicians only attach weight to reported symptoms if their lab tests and/or physical exam show obvious abnormality. This attitude does not seem to consider the following possibilities:

• No physician understands the human body completely.
• Current medical technology cannot measure every functional parameter of the human body.
• Not every patient complaining of vague collections of symptoms is a liar or a hypochondriac.

Looking back at the history of medicine it seems clear that the only way to make progress is to consider that the unknown still exists instead of labeling puzzling sets of symptoms as being not worthy of serious consideration or not of organic origin.

O.K. We don't understand everything but perhaps you remain undiagnosed?

Another stumbling block for many physicians is the belief that people with ME/CFS have some other condition that is not yet properly diagnosed - this is the wastebasket diagnosis theory. The irony here is that many ME/CFS patients go from doctor to doctor in search of a diagnosis before a diagnosis of ME/CFS is made. In addition many patients are tracked by their physicians for other diagnoses after the ME/CFS diagnosis is made. So it seems ridiculous to explain away ME/CFS as a collection of undiagnosed patients.

ME/CFS is a syndrome!

In the fine tradition of clinical medicine ME/CFS, like other not yet understood conditions, is defined by observation and the elimination of other differential diagnoses. In this case observation means listening to your patient since they have more insight than you do into their bodies functional state. Until we have an easily performed lab test, a patient's observations will make the greatest contribution to the diagnosis. There is plenty of information available about ME/CFS for physicians who wish to be informed about this condition.

O.K. you have ME/CFS - what do you want from me?

Perhaps the greatest stumbling block for physicians is that fact that relatively little can be done to treat the underlying pathology in ME/CFS patients in terms of drug therapies etc. In the face of this frustrating reality it is understandable that ME/CFS patients are not exactly sought after by many physicians. However there still are things a caring physician can do to help their ME/CFS patient:

• Document their physical condition and support them in their quest for disability benefits if necessary. Yes paperwork is a hassle but it means much more to your patient than any prescription you could write.

• Monitor their health for non-ME/CFS problems - just because they have ME/CFS does not mean that they cannot have other problems which you could treat.

• Give them emotional support and take their complaints seriously. Consider that many more debilitated patients live as virtual recluses and as such may get little if any social support due to the lack of understanding and acceptance of their condition.

• Try to find symptomatic treatment for pain and other symptoms to help improve your patients quality of life. This process will require experimenting and patience since many ME/CFS sufferers are very sensitive to medications and often encounter bad side effects.

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