It’s here. A new case definition and a new name. It will take some time for me to get through the 300 page report and prepare a more detailed analysis. But based on the press conference and summary, how did the report stack up to my criteria for success?
Post-exertional malaise: This was my drop dead deal-breaker, and the new definition makes PEM the central feature of the disease. Dr. Clayton said that PEM was “the essence of this disorder,” and it is required for diagnosis.
Core features: As I had hoped, the new definition requires only four symptoms for diagnosis: a substantial decrease in function (work, school, social); PEM; unrefreshing sleep; and cognitive dysfunction and/or orthostatic intolerance. These core symptoms also match what Dr. Lenny Jason’s work has shown. At the press conference, Drs. Clayton, Bateman and Rowe all emphasized that this is an evidence-based definition.
Frequency/Severity: Another requirement I was hoping to see. The new definition requires symptoms “persist for at least 6 months and be present at least half the time with moderate, substantial, or severe intensity.”
Name: CFS is out, but so is ME. Citing a need to focus on the key feature of the disease, the committee proposes Systemic Exertion Intolerance Disease. Um, what? Dr. Lenny Jason told David Tuller that the patient community will not like or accept this name. I think he’s probably right about that.
Making the diagnosis: As I hoped, the report provides guidance on how to make the diagnosis, with an algorithm, short list of tests, and clinician materials to be published soon.The committee insists that any healthcare provider can make this diagnosis and start treating patients. I want to read more in the report about how they think this is possible, given the radical under diagnosis we currently face.
No psych: Dr. Clayton was emphatic at the press conference that this disease is not somatization. I’ll be reading the report carefully to see how they address the psychosocial theory.
Where To Next: This is the BIG question. Will HHS accept this name and definition? Who will submit the proposal to create a new code in ICD-10, and what category should it lodge in? Will the name CFS simply be replaced with SEID, without refining the research cohort selection?
Dr. Clayton said that this report gives advocates the “fodder” to “act up.” Will we? Can we find a way to pull together and use the good parts of this report to advance the cause? That is the question that will keep me up tonight.