Warning, I'm feeling feisty.
I don't think its "fine to gather all sorts of types of fatigue under CFS" Cort. Quite the opposite - it's an affront to those of us who are living with severe physical pain, limited mobility, are home and bed-bound, have severe neurological symptoms, etc., to cast the net around anyone who is chronically fatigued. There isn’t enough money to do properly study people meeting the Canadian Consensus let alone the Empiric definition.
Where does this dilution stop? When we have too many subsets to do any meaningful work? Are we there yet? If you don’t start out planning to subset it’s pretty hard to do it cleanly and efficiently after the fact.
It looks like Dr. Batemen fed the Lights three tiers of patients by level of functioning. Perfect. I love it. Good study design. Gotta do it up front and it takes a very experienced clinician to do this. Will the CDC hire or collaborate with one? They haven’t in 25 years. Would the Lights study have any meaning if they got a heterogeneous mess of patients like the ones the CDC used for the Switzer study?
I'm against calling this illness ME/CFS if we're going to throw people with primary depression (for example) into that definition. We might as well call it ME/CFS/Tired/Sad/Mom-I-don't-want-to-go-to-school-today-my-tummy-hurts. I think the CFSAC may have missed the opportunity to tack a meaningful (CCD) definition to accompany the recommended name change.
The ongoing dilution of the definition needs to stop and we should be saying this in unison, at every opportunity. Thank you George for including the Carruthers et al (CCD) document with your letter to Dennis Mangan.
Limited research dollars need to be for THIS illness and the research needs to be laser-focused at the sickest people first and
PEM needs to be required. If they want to throw lots of mental health money into the pot and examine the range of all sources of fatigue I might have a different perspective. As long as we’re getting pocket change no way do we throw the rope around any type of fatigue and call it CFS, let alone ME/CFS.
Told ya I was feeling feisty.