Discussion in 'General ME/CFS News' started by Indigophoton, Apr 9, 2018.
That would be the one.
Actometers, 2 day CPET, and even work participation statistics come to mind. They had one of those and it failed to show improvement, and one more that they dropped (actometers), and the other predates the start of the PACE trial. Indeed CPET is a 1949 technology, though the repeat protocol was only formalised in 2007.
They don't measure the underlying condition but the effects of the condition on activity. (Not sure about the CPET one but more validation is probably needed).
Correct, kind of, but they are still objective measures that can show improvement. CPET does measure a component of the underlying condition with the repeat protocol. In terms of underlying causation we have no tests that are validated because we do not understand the cause.
Just to clarify, by "underlying condition", I meant the condition/illness of ME/CFS, and not their made-up perpetuating factors, and not the causes. They did have proxys for the condition, albeit not very good ones. They had employment status, employment days lost; they had the step test, the 6mWT, although those measures are susceptible to cognitive bias if pts are pushed to do well despite their condition.
They used the wrong protocol for that test, which has a known bias. As always the known bias is in favour of their hypothesis. Funny its never the other way around.
Sharpe's latest excuses from the recent BBC News article about the Parliamentary debate.
It is not clear from the report when Sharpe is alleged to have said that. Do we know?
Pity no mention of PACE flaws, but still I think enough to help those new to MEbe cautious about GET
I know no more than what is said in that article. The assumption would be that it's a new quote, obtained for that specific article, but it would be just that, an assumption.
The article author is on Twitter, if anybody wants to ask that way.
Oh. So I thought he was claiming that PACE didn’t change anything much regarding guidelines.
downside for Sharpe and co of people with ME being limited on other activity and spending time online is stuff theyve said online is going to get found
Apart from Tom's studies (below) [which document indirect harm], do we still not have any direct accounts of harm from the trial itself that we can point to?
See a lot of people on social media saying theyve been harmed by GET I believe a couple Ive seen also said they were in the trial. Dr Myhill's 210 supporting complaints to GMC presumably includes some trial participants but we dont have the info on those individual complaints, maybe Craig Robinson from Dr Ms team would be able to provide more information on that and whether they have any plans to publicise individual experiences of trial participants.
Can you believe it? Somewhere there is a department, with a budget, tasked with sorting and evaluating all these claims. Does it remind you of those primary school assemblies attended, when all gain certificates?
EDit a lot has intervened between this and the post which I was responding to which was that about the Platinum Award from ACCEA.
I think it can be argued (by someone smarter than me), that if patient trust is high, they may be unaware of harm. So the ability to say there was no harm is not a statement that can be made with confidence. There may be some first hand documents of harm submitted to Myhill's GMC case against PACE. If so, I wonder if they will be available publicly once details of the GMC case are published.
didn't Carol Monaghan quote from one participant of the PACE trial (re harms)?
One participant in the original trial said:
“After repeatedly being asked how severe...my symptoms were. ..I started to feel like I had to put a...positive spin on my...answers. I could not be honest about just how bad it was, as that would...tell the doctors I wasn’t trying and I wasn’t being positive enough.”
mind you there would be one way to find out; do the 5 year follow up and ask
"following participation in the PACE trial did your condition get worse" but ofcourse they would never do it.
I've just looked up the link to the award mentioned here. There are hundreds of awards to doctors, ranging through bronze, silver, gold to platinum at the pinnacle.
Here's the whole of the Michael Sharpe page:
So there we have it - in his own words. PACE was a study of CFS/ME, not CFS as he's now claiming, and it influenced NICE and worldwide guidelines. He can't deny it.
Separate names with a comma.