Peter White at it again - Now its a 'GETSET' Trial

Sean · Apr 27, 2012

alex3619 said: ↑

Pick option C, pick option C, pick option C. Said it three times so it must be right.

Seems to me that A is not possible, and that B inevitably leads to C.

So, yes, all roads lead to C.

oceanblue · Apr 28, 2012

alex3619 said: ↑

Hi oceanblue, it is well established that capacity is not repeatable on two days running. This discredits the entire basis of the 6MWT as it presumes repeatability. I am referring to the Pacific Labs studies, plus the Lights, plus the possibility that NADPH gives a spot test on fatigue/capacity. The NADPH finding gives us, potentially if it can be validated this way, an easy blood test to replace the exercise testing. It would be nice if Pacific Labs could test this - the first day testing is still required, but the second day would be just a blood test if this is validated. In addition once this measure has been validated (presuming its not a flop) then we can test both severe and very severe patients as well. I think there is a thread on this on PR somewhere (it also relates to mitochondria, oxidative stress and methylation) but here is the paper (which may be dodgy as its from Wichita, I am not sure):

http://www.riordanclinic.org/research/articles/AT-2012-v18.pdf

Furthermore its a condition of ME that we have not just fatigue but fatiguability. Any spontaneous measure is invalidated for ME. They cannot rationally claim that ME is the same as CFS without running into a contradiction unless they also claim that fatiguability is not an issue. Exercise testing has to be a repeat measure.

So to clarify, the 6MWT is only discredited wrt ME and well defined CFS, not for the majority of the population.

(not important, more to complete my notes). Just came across the excellent Jason review of PEM which mentions the Lights study used 20 minutes of excercies at a fixed heart rate ie much longer than the 6MWT and also not self-paced.

PhoenixDown · Jun 22, 2012

Patients attending two CFS/ME specialist clinics in London and receiving a diagnosis of CFS/ME from a specialist doctor

A specialist? Who's specialist though? One of those "faulty illness belief" specialists by any chance? Potentially very misleading if it means what I think it means.

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Vertigo: Unwelcome Gift on My 25th Wedding Anniversary

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