Nielk
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From her fb page - https://www.facebook.com/NSUINIM
On February 10th, the IOM released their report “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness”. The IOM committee members, which I thought was a compassionate and determined bunch, were very keen to get chronic fatigue out of the name of this illness. The committee completed an evidence review and agreed that there was very strong evidence for post exertional relapse, dysautonomia, and cognitive dysfunction. They also agreed that there wasimmune dysfunction as evidenced by NK cell functional defects. So they came up with a name that included most of that, Systemic Exertion Intolerance Disease, accepting it was not perfect but a step forward, and asked for a chance to look again in 5 years, as the trajectory of new knowledge is substantial and would support more based on the evidence by that time. They also agreed and stated that the field was underfunded and appalled by the lack of knowledge at the level of the primary care giver.
At this point in time, there was not going to be a perfect name. The public testimony did not move in that direction, nor did the expert review. What could be said was that the current name was harmful, and the committee did not think it reasonable to complete their main task (a clinical case definition) without moving away from Chronic Fatigue Syndrome.
What would you have picked? I agree it’s hard to capture the complexity and the severity of this illness with an acronym, but I do see it as a move forward.
Unfortunately, in an evidence based review there was not sufficient evidence to support the M in Myalgic Encephalomyelitis. If there is a better pick, now is the time to rise up and say so, if only in response to this report.
That’s my two cents – Dr. Nancy Klimas