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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Your Syndrome’s Missing Benefit


ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

Your Syndrome’s Missing Benefit

The prestigious Institute of Medicine recently issued a comprehensive report on the vexing condition long known as both “chronic disease syndrome” and “myalgic encephalomyelitis.” The report, commissioned because of the frustrations engendered by the enigmatic condition for patients and providers alike, runs to 305 pages.

For our purposes here, just a few lines will do. First, the committee recommended that the condition be renamed to: systemic exertion intolerance disease. The functional reference, that people with the condition are generally intolerant of physical exertion, is important. More important, though, is that last word: disease.

The use of “disease” was clearly no accident, as it recurs in the opening paragraph of the summarized recommendations. That paragraph reads as follows:

The primary message of this report is that ME/CFS is a serious, chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients. In its most severe form, this disease can consume the lives of those whom it afflicts. It is ‘real.’ It is not appropriate to dismiss these patients by saying, ‘I am chronically fatigued, too.’ ...
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Never Give Up

Collecting improvements, until there's a cure.
It took a looooooong time for him to get to this. Glad he finally did. He refers here to the less than kind responses to an article on the IOM report about ME/CFS, many of which objected to the use of the term "disease" being used for what they derisively say is a "syndrome".
That the often truly impressive prowess of modern medicine is ill adapted to the misfortunes of the merely syndromic is not the truly grave problem here. The problem is the cynicism reflected in those comments on Medscape. The problem is failure to recall that the patient is the one with the disease, even when the disease is a syndrome.

The IOM clearly recognizes this, and has lent its imprimatur to the legitimacy of systemic exertion intolerance disease. The report will likely accelerate the quest for objective diagnostic tests, and effective therapies. Those with the condition will certainly benefit from such advances.

But there are many other syndromes out there, and millions of others suffering the conjunction of insult to injury. They, too, would benefit from diagnostic tests and better treatments. But there is another benefit they are missing and need. It requires no IOM report, nor Nobel Prize. It requires only compassion, and humility. It requires only the acknowledgement that it’s not the patient’s fault their symptoms have not yet found an abnormal scan or blood test to call their own, the recollection that the patient is the one with the disease, even when the disease is “just” a syndrome.