Discussion in 'General ME/CFS News' started by Indigophoton, Jun 25, 2018.
@Indigophoton @Andy both posted this
Curiouser and curiouser!
I'll delete mine.
From Steve Lubet's post:
But even taking the highest possible road, there is an uncomfortable question that must be asked: Why won’t any of the PACE brigade disown, or at least try to moderate, the outbursts of Prof. Michael Sharpe?
It is understandable that Sharpe is unhappy about the discrediting of the PACE trial. He has devoted much of his professional life to the CBT/GET theory, and it must be frustrating and painful to see it so broadly rejected by patients and scientists. His reaction, however, has been anything but graceful. He repeatedly lashes out at those who disagree with him, often leveling intemperate charges. This cannot be unknown to the other PACE investigators.
Excellent point. I've always wondered what the silent majority of the entire PACE team are thinking, and why none of them have spoken out in the interest of patients.
If I was a research who'd gone into this trial in good faith and had seen the travesty that had been made of it - with my name on it - I'd be spitting feathers.
maybe there isnt a silent majority maybe they actually believe their own hype and think people arent being harmed
ETA in a way its worse if they are a silent majority are aware of harm and are not speaking up
Looking at the number of names that have reputations at risk of serious damage a quotation comes to mind that may explain the silence.
"We must, indeed, all hang together or, most assuredly, we shall all hang separately." - Benjamin Franklin
I find it hard to believe that a majority of the team don't understand that having improvement/recovery criteria for the main measures that are below the trial entry thresholds isn't a serious problem, just to give one example. If they've read the Wilshire paper - and that's part of their job, frankly - they should understand how awful PACE is.
I can understand the little cabal of principal investigators being locked into groupthink, but not the wider team.
Some of these people are surely senior enough to speak out without fear.
Time they did.
yes but if you are one of this team having seen the grip the little cabal had and still have it is a big risk of losing all your connections and your career - having seen how Keith Geraghty and others have been dealt with by this group you know they are going to do all they can to undermine and discredit you if you speak out
ETA so you would have to have some courage to do so
At best they started out in good faith and i'll accept this may have been the case
I can agree to this, they thought they were right and designed a trial to prove it once and for all
They may have started out willing to follow where science led but it led away from their theory so they used malfeasance to get it "back on track"
This is an assumption we can give away in the interests of politeness but in reality their malicious intent is apparent and they tried to hide it with taxpayer money (and lost). We are fortunate they did not try to destroy the data instead of releasing it, but only committing one malicious act is not a reason to let them get away with not using another to attempt to hide their original sin.
So all that said i agree with the points your making but i think thats giving away too much, the reality is they committed fraud and are using threats, lies, doublethink and claims of persecution to defend it.
Actually, looking again at the full team, some of the more senior people (Tim Peto, for example) as listed as 'specialist medical care doctors', not as contributing to the paper or design, so actually, yes, the more junior co-authors really would be sticking their necks out.
Excellent points well made. Grateful thanks to Steven Lubet.
Can someone point Steven Lubet in the direction of the appalling 'review' for the BMJ of the Wilshire et al. paper? It's another example of how completely out of control this BPS group of psychiatrists are in their attempts to defend PACE.
@Trish good point, I'll send him that review. I'm not sure he's seen it.
Good faith/best intentions doesn't cut it IMO, this has now been going on for years, the collision, lies, intimidation, quite apart from the fact they knew that they were harming the people they were supposed to be helping.
Regardless of their thoughts/motives/perceptions in the beginning their actions since damn them and act as evidence that they knew, why try intimidation and suppress data if they didn't think they had done anything wrong?
So...assume good faith, no, I don't just want the whole edifice destroyed in the most public way possible, I want the wrongdoers punished which won't happen if everyone accepts "good faith".
I sympathise, @Wonko, but I can see why Steve Lubet has written the article in this way. He's making the point, I think, that even if we start with the premise of good faith, we still come to the conclusion that PACE is crap and that Sharpe's actions in trying to defend it are not the actions expected of rational a scientist.
I agree but i would then follow it up with reality because we give up too much when we respond to fraud with politeness.
Steven Lubet is a professor of law, and therefore I would think have an extremely pragmatic eye on the ball from a legal perspective. I would not pretend to fully understand his strategy here (for strategy I'm sure it is) but I would not be surprised if it helps our BPS folk to perhaps dig deeper holes for themselves, maybe into a legal minefield (can always hope). I am a weird mix of idealist and pragmatist (the idealist in me realised long time back that the pragmatist also lurking in me was not a competitor but colleague ), and I always favour the most effective option, even if it seems less ideal.
My doctor once suggested I go to the exercise physiology clinic of Nathan Butler. Nathan Butler was involved in the PACE trial, presumably as a GET therapist, and had subsequently set up the Melbourne, Australia clinic, specialising in CFS and fibromyalgia. Back in 2015 or so he proudly proclaimed his involvement in PACE on the clinic's website which promoted recovery through exercise. At the time, I was interested to find somewhere where I could do a 2-day CPET and, while I didn't like the look of the clinic, I rang them to see if they knew. The staff there had no idea what I was talking about. (Yes, this was an exercise physiology clinic specialising in the rehabilitation of people with CFS.)
Anyway, now I can't find any mention of PACE on the clinic's website, not even in the section about Nathan Butler's experience. The claims it makes about recovery from CFS are much more toned down and it talks about 'sustainable exercise'. It has a section about orthostatic intolerance which I'm pretty sure wasn't there before - the clinic now claims to treat this condition. And it has a section on 'Cancer and Fatigue', 'coming soon'.
So, in answer to the question @Sasha, I think for some of them whose career, whose business had been built around the findings and reputation of PACE, it's been a pragmatic matter of adapting their offering and edging quietly away. I don't know what Nathan Butler believes now, but it would not be in his interest to loudly denounce the PACE trial. Best to pretend it never happened.
I guess this is a success for us.
I think the point of the article is not that you have to accept any of those assumptions. That's just how he is pitching his questions, or framing his argument.
His article is about the silence of others, it's not another rehash article of everything, that is why he is setting everything else to the side.
By doing that, it shines the spotlight brighter on those who are remaining silent.
Separate names with a comma.