I seem to be in the minority here in feeling that the best approach is to be direct, to focus on the overarching issues, and to try to boil things down enough to give an explanation of the whats and whys. In that respect, I sketched out how I would approach it, if it were me. The essence is a brief explanation of why this disease isn't what they think and the proof that there is something real and devastating here. I only really got to some of the former in what I wrote. I realize that the audience to be addressed matters and that this may be too high level or wonky, but I think regardless that selling people on the disease means giving them a way to understand what they may have heard. To me, focusing on just the positive or getting wrapped too deeply into discussions of PACE miss that.
"If you had a hand in condemning to the margins of medicine a disease more debilitating than MS, congestive heart failure, and end-stage renal disease, so that generations of terribly ill patients not only received no competent medical care, but were belittled publicly, ostracized by family and friends, and left financially broken, would you, or could you, admit that you were wrong?
The cardinal symptom of Myalgic Encephalomyelitis (ME) is post-exertional malaise (PEM), a severe worsening of symptoms following physical or mental exertion that can last for days and, for the sickest patients, even weeks. Although the main symptoms of the disease include severe cognitive impairment, unrefreshing sleep, headaches and muscle pain, dizziness, and new-found sensitivities to light, sound, and touch, what distinguishes the disease is patients’ abnormal response to exertion. For patients with ME, exertion triggers a profound relapse (which patients often refer to as a crash) that can leave even the more mildly ill bedridden or housebound for days at a time.
This symptom has long been considered the hallmark of the disease by patients and experts. Yet, thirty years ago, officials in the U.S. National Institute of Health and a group of psychiatrists here in Britain ignored that hallmark and radically redefined what it meant to have the disease. They did this by renaming the disease Chronic Fatigue Syndrome and by establishing the first in a series of ever more broad case definitions that made two crucial changes. First, by downplaying PEM and other disease symptoms, the new definitions effectively rebranded the disease as synonymous with chronic fatigue. Second, a few of these new definitions allowed patients with primary psychiatric illness to be diagnosed and studied in research as CFS patients, even though many psychiatric disorders present with fatigue, a change that muddied future attempts to study the cause of the newly defined disease. While the change in how the disease was defined effectively obscured ME in a broad umbrella of fatiguing illness, guaranteeing that research would find little evidence consistent with the ME that patients reported, the inclusion of primary psychiatric illness meant that future studies would show links to psychiatric disorders — of course, because those disorders were allowed into the studies!
Fortunately for patients, the pendulum is now swinging decisively back. In 2015, the U.S. Institute of Medicine issued a report that strongly affirmed not only that post-exertional malaise, rather than chronic fatigue, is the hallmark of ME, but also that the definitions established for Chronic Fatigue Syndrome were not reliable and had led to the stagnation of research for decades. Further, the report specifically recommended the retiring of the loosest of these definitions, which formed the basis for much of the research here in Britain suggesting that ME is a psychiatric disorder treatable through exercise and talk therapy."
