It is fair to say that when the Institute of Medicine (IOM), now the National Academy of Medicine (NAM), published a report on 10th February 2015 on ME/CFS “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness” that the IOM’s committee’s summary of the evidence base and proposed redefining of diagnostic criteria was welcomed and the IOM’s 2015 criteria has been used widely.
What was not welcomed was the committee’s suggestion of reneaming the disease as Systemic Exertion Intolerance Disease (SEID). The proposal faced backlash from the patient community. This reaction was predicted by Dr Leonard Jason in an interview with David Tuller, where he stated – “The committee has come up with a name without vetting it. And they will basically get a tremendous amount of discontent and dissatisfaction right from the starting point, because the patients want something very different.” Many individuals felt that the term SEID failed to capture the complexity of the illness and minimised its severity. This feeling was amply shown in coverage in ‘The Lancet’
Systemic implies that the condition affects many body systems; exertion intolerance is meant to convey the central feature of the disorder, although most patients are fatigued even at rest; disease implies a pathological mechanism underlying the condition, but, as the authors suggest, no disease process has yet been properly identified.
The US Centers for Disease Control and Prevention (CDC) and the National Institutes for Health (NIH) both refer to the disease as ME/CFS, even when citing the Institute of Medicine’s 2015 criteria. And so, the acronym SEID faded away – one of many unused names for the disease.
That was until the US Department of Veterans Affairs (VA) proposed to amend the section of the VA Schedule for Rating Disabilities in February 2019. This is a system used by the VA to evaluate the severity of disabilities for veterans and helps determine the percentage rating of a disability, which in turn affects the amount of monthly compensation a veteran receives. The proposed name being SEID/CFS. In addition, changes are proposed to §4.88a Chronic fatigue syndrome in the Schedule to reflect diagnostic updates in light of NIHR/CDC moves.
