alex3619
Senior Member
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You asked for evidence to support the claim that patients taking the 2-day CPET test are having their diagnoses validated now. The Workwell Foundation and Dr. Snell in particular does claim to be confirming diagnoses for patients regularly using the 2-day CPET. Yet you argue that they are validating only disability. You seem to be disagreeing with experts now rather than with me.
Level 5 evidence, it will be ignored. Also there are things like this:
Of their new study, published this summer, Staci Stevens says; it
“provides the CFS/ME community an objective, quantitative marker of
post exertional malaise. To date, diagnosis has been qualitative based
on a list of symptoms, resulting in wide variability in the patient
population.”
This is from the supporting material from the upcoming seminar: http://voicesfromtheshadowsfilm.co.uk/2013/bristol-event-feb-5th/
The Workwell foundation has only begun the validation process. Its good science. It does not show that ME is validated. It doesn't even show that PENE or PEM is validated, since both PEM and PENE have a composite symptom set. What it shows is a marker that might form the basis of PEM or PENE has strong objective evidence, and that marker is measurable in many ME patients.
A biomarker is not necessarily a diagnostic biomarker. In particular, a biomarker that provides support for only one part of PENE does not validate ME as a whole. Its a step in the process. This 2 day CPET biomarker is diagnostic of a crash in energy production.
What it does do, for those patients showing this, is that standard psychiatric GET is invalidated.
So again, I argue my interpretation is consistent with the experts, and not reading things into their statements that they do not show. When we claim too much, like the WHO diagnostic code validates ME, then we easily get dismissed by authorities.
I would hope the IOM take the 2 day CPET seriously. If the evidence-based methodology used is cookie-cutter then they might well dismiss it, which I will then be arguing is an invalid use of the evidence-based criteria. In order to do that it is very important to only claim what the data actually shows, and not go too far beyond that.