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It’s a Bird, It’s a Plane, It’s CFS by Another Name

Unknown-1The IOM (Institute of Medicine) convened and with much deliberation came up with a new name and new definition for what has already been called by so many names — Yuppie Flu, CFIDS, CFS, Chronic Fatigue Syndrome, ME, myalgic encephalomyelitis, etc. The new name is SEID: Systemic Exertion Intolerance Disease.

Do I think this is the perfect name? Not really. Do I think it is a horrible name? No. It has some good points. Systemic means body-wide. This says to me that exertion causes body-wide symptoms. Note that it is now called a disease, not a disorder.

Dr. Ian Lipkin was just interviewed on Dr. Oz’ Show and he stressed that the disease is an infectious process and they are searching for biomarkers so that they can test. With this they will finally have proof. We seem to be on the cusp of some breakthroughs. With the new name and definition, we are getting a lot of much needed press for our illness. This can only help our cause and possibly bring in research dollars and interest.

The definition was not bad (in my humble opinion). To qualify for a diagnosis of SEID, you have to meet the following criteria.

The proposed diagnostic criteria for ME/CFS diagnosis requires that the patient have the following three symptoms:

  • A substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities, that persists for more than 6 months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest, and
  • Post-exertional malaise,* and
  • Unrefreshing sleep*

At least one of the two following manifestations is also required:

  • Cognitive impairment* or
  • Orthostatic intolerance

The IOM panel stressed that doctors should not wait 6 months to begin treatment. That they should take this disease seriously. That this disease is not in our heads, that exercise is not the answer and that we are no longer to be shoved aside.

In my opinion, we ought to take this new name and definition and all of the media attention it is bringing with it and RUN WITH IT! We are never going to find a name and definition that everyone agrees with. I don’t think this is perfect. I just don’t want to waste more time going back to the drawing board. I am ready to move forward.

You can read the full report, the key facts, download the Clinician’s Guide, etc. here.

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