Is there any literature to prove the validity of this disease

[alex3619]

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.

 

[heapsreal]

We have said it before but they should use the 2 day exercise test and the nk function test along with the CCC as well as looking at adding other tests as they become available through research such as cytokine patterns etc.

Also its not a matter of just say low nk function is a cfs me diagnosis but it has to be a collection of symptoms and tests.
I think using this type of guidline can help narrow down a more true group of cfs/me and increase accuracy of research.

Why is it so easy for us to understand this but the govt/health authorities cant work it out. It smells like a conspiracy theory to make cfs me a psych disease.

 

[Ember]

This is from the supporting material from the upcoming seminar: http://voicesfromtheshadowsfilm.co.uk/2013/bristol-event-feb-5th/

Staci Stevens must be referring to a diagnosis using Fukuda when she writes, “To date, diagnosis has been qualitative based on a list of symptoms, resulting in wide variability in the patient population.” I can't imagine her agreeing with your interpretation that the 2-day CPET doesn't validate even PEM. In any case, you've shifted away from discussing validity now to discussing levels of evidence, a discussion that I haven't chosen to engage.

 

[alex3619]

Personal validity of our disease is one thing. Medical, government and public validity is something else. To really address this question is beyond the topic of this thread, so I am starting a new one.