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

oceanblue

Guest
Messages
1,383
Location
UK
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.
 

Graham

Senior Moment
Messages
5,188
Location
Sussex, UK
Hi Anne. Sorry about not replying sooner, but I have only just joined this thread. The GETSET trial is being financed by the NHS through its NIHR operation. I don't know how much it costs yet though. Here is a link to their data:

www.ccf.nihr.ac.uk/PGfAR/about/Pages/FundedProgrammes.aspx

White's 3 MRC grants must include the PACE trial, which isn't finished although it should be put out of its misery. Here's a link to a large spreadsheet of MRC investment over the years: it takes ages for it to be loaded. Looking through it, I can only find the PACE trial under his name: presumably the other two have a different lead author.

www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC009457
 

Dolphin

Senior Member
Messages
17,567
From the minutes of UK CFS/ME Research Collaborative Meeting 5.6.14 (i.e. June 5, 2014)

http://www.actionforme.org.uk/Resources/Action for ME/Documents/chair-approved-cmrc-minutes-5614-jm.pdf

"PW [Peter White] has an extension to NIHR RFPB grant regarding GET which includes a qualitative study to look at patients’ views of being offered GET as an intervention and will include those that have and have not benefit from GET as an intervention."

Thread for discussion on the minutes in general: http://forums.phoenixrising.me/inde...orative-meeting-5-6-14-i-e-june-5-2014.32330/
 

Graham

Senior Moment
Messages
5,188
Location
Sussex, UK
I'm afraid the first link that I posted in my previous post is broken. I don't know why, but am chasing it up. It was the first good listing of medical research studies over the last 25+ years, with details and funding. Now it has gone.
 

Dolphin

Senior Member
Messages
17,567
I'm afraid the first link that I posted in my previous post is broken. I don't know why, but am chasing it up. It was the first good listing of medical research studies over the last 25+ years, with details and funding. Now it has gone.
Anyone here happen to save it?
 

Graham

Senior Moment
Messages
5,188
Location
Sussex, UK
I have been in touch with the people running the site, and they don't know. They passed me on to a person at NIHR who gave me two links, one only dealt with current studies, and the other link was broken. He then went on holiday, but I have heard from him that he is now back and looking into it.