What are they “studying” anyway? Without going into depth on the issue because it is beyond the scope of this post, let me just mention that studying two completely different disease entities, ME and CFS, together, is as unscientific as it gets. ME is not CFS and vice versa. The name Chronic Fatigue Syndrome was deliberately chosen by the CDC to muddy the waters because it can be, and is, used interchangeably with fatiguing conditions, such as deconditioning, psychological diseases, such as depression, as well as conditions that are not even illnesses, but produce fatigue as a symptom.
Many patients do not understand the difference between ME and CFS because the government has done a good job at creating confusing around the two. Even some experts do not keep them separate. Worse, they use the dreaded term “chronic fatigue” for ME all the time, a source of never-ending frustration for patients suffering form the debilitating effects of ME. Some experts openly admit that they are treating people fatigued due to medical conditions other than ME or due to mere deconditioning. With an unscientific status quo like that, how could the non-experts on the panel possibly understand the distinction? It’s just not conceivable that a decent, scientifically accurate definition of ME could be produced by this particular IOM committee.
As if to confirm the point, the IOM, via its listserv, announced that the first IOM meeting will be held on January 27-28, 2014 during which one objective for the committee is “to clarify the scope of the charge ….” In other words, the IOM is unclear about what it got hired to do, which is outrageously pathetic and mind-blowingly unprofessional. So the IOM is wondering what the heck they are going to be paid the sum of $1 million for. I might be cognitively impaired, but I am quite certain that I have never advised a client to enter into a contract with an uncertain scope.
How does one even pick a panel for the “study” without knowing what the panel will be doing? Seriously, this is not a rhetorical question.