Definitions Matter: IOM Report on ME/CFS

Being a sufferer of Chronic Fatigue Syndrome (CFS) means dealing with skeptical doctors, a lack of public awareness, and a very confusing diagnostic process. The last is a much bigger problem than even sufferers understand for it is the doctors being confused as well.

So I applaud the new diagnosis method proposed by the Institute of Medicine of the National Academies here in the United States. While I haven’t read the full report yet, the outlines and video presentation depict a much more streamlined (and dare I say it, more accurate) list of symptoms for diagnosis.

Quoting from the Key Facts PDF:

There are five main symptoms of ME/CFS:

1. Reduction or impairment in ability to carry out normal daily activities, accompanied by profound fatigue;
2. Post-exertional malaise (worsening of symptoms after physical, cognitive, or emotional effort);
3. Unrefreshing sleep;
4. Cognitive impairment; and
5. Orthostatic intolerance (symptoms that worsen when a person stands upright and improve when the person lies back down).

The first three are mandatory and one of the latter two is needed to fulfill the criteria for diagnosis.

I suffer harshly from the first four and haven’t been tested for orthostatic intolerance. Lately, number four has been particularly bad, hence my not posting much. The last few days have been especially challenging making coherent sentences a challenge even when speaking. Today is better, thankfully.

Also in the report is a proposal to rename the disease to Systemic Exertion Intolerance Disease or SEID. Doesn’t roll off the tip of the tongue, does it? However, it is bang on what the illness is really about and, most importantly, replaces “syndrome” with “disease” which is important in the medical world.

Note that this report has nothing on treatment and is confined to diagnostics for doctors and researchers, so please don’t get your hopes up on a treatment being developed quickly or even at all. What this report does is add legitimacy to the illness which is vital for extensive research to be done like Stanford’s findings last year of physical abnormalities in CFS patients’ brains.

After over 25 years of having this miserable illness, I’d given up any hope of advancement in any way or form from the medical community. This may be more than a glimmer.