(The email exchange discussed in this blog can be viewed here: https://justpaste.it/xnq8 )
Sense About Science (SaS) exist to challenge misrepresentation of science and evidence. They advocate openness and honesty about research findings. They encourage people to #askforevidence. They agree that: we need all available information to make informed decisions about health care; hiding half the data is how magicians do coin tricks and shell games; with incomplete data we can only get an incomplete picture; outcome switching is like choosing lottery numbers after watching the draw. They ask people to contact them when there is something wrong so they can make a fuss.
When patients were trying to obtain the PACE trial data from Queen Mary University of London, many of us asked SaS if they would help us. They refused. They said that the trial results were available and that the investigators had complied with CONSORT.
In March, Rebecca Goldin posted a scathing criticism of PACE on the website of stats.org concluding that ‘the flaws in this design were enough to doom its results from the start’. In an accompanying editorial Trevor Butterworth of Sense About Science USA, equally as critical, said that ‘the way PACE was designed and redesigned means it cannot provide reliable answers to the questions it asked’.
Sense About Science USA is described as the sister organization of SaS. It runs the stats.org website in collaboration with the American Statistical Society .
After such criticism of PACE by Sense About Science USA and stats.org, would SaS, the UK organization, now support patients? They gave no signal they would, so in June I emailed SaS. I got an automatic response acknowledging receipt of my email, but no reply. I waited a few weeks and tried again. The same thing happened. In July, I wrote a letter to Tracey Brown. She didn’t even have the good manners to reply. In September I emailed Professor Paul Hardaker, chair of the trustees, asking if he could help me get an answer to my questions. He replied almost immediately, apologized and passed on my email. Soon after, Julia Wilson sent me an email.
I asked five questions of SaS:
Do they accept Goldin’s analysis of PACE and Butterworth’s criticism as valid?
Why, despite our requests, had they not made a fuss about something said by stats.org to be wrong? Would they?
Could they say where the data were available, the ‘results’ of the PACE trial?
Did they support the attempt by the PACE investigators to extend the Data Protection Act to prevent sharing of trial data?
Would they allow us a right of reply to Michael Sharpe’s interpretation of his own study which they had been carrying on their site since last October?
By the time I received a reply the Tribunal decision had been made, ordering QMUL to release the data. My third question was redundant.
SaS conceded Sharpe’s piece contravened their editorial policy and added a rider to that effect on their website. They claimed that they had never supported the extension of the DPA, but had not had enough resources to help in the case. Not enough it seems to post a tweet or send a single email.
They did not say whether they accepted the analysis and criticism on the stats.org website as valid.
There then began an exchange in which Wilson singularly failed to answer simple questions and continued to use language like a politician trying to avoid an issue. They did, though, remove the part of Sharpe’s article in which he made claims for his own study.
Eventually Wilson stopped responding to my emails, so I copied in Hardaker again. This time she did reply and she did finally state that SaS accepted Goldin’s analysis as valid. According to SaS the PACE trial is flawed. Wilson then ended the exchange.
They still refuse to help in any way. They have not welcomed the Tribunal decision. Even though they agree PACE is flawed, they are not prepared to do anything about it. They do not say whether they accept Butterworth’s criticism as valid.
A number of questions remain for SaS:
Why did they ignore my emails and only answer when I contacted the chair of the trustees?
Why did they allow Sharpe to promote his own study, contrary to their own editorial policy?
Why did they not push for the release of PACE trial data?
Why did they not support patients in their case against QMUL when QMUL were attempting to extend the DPA, which would have had a stifling effect on trial transparency generally?
Why have they never welcomed the Tribunal decision?
Why did they take so long and why were they so reluctant to say they accept Goldin’s analysis as valid?
Why will they not say they accept Butterworth’s criticism as valid?
Why do they still refuse to make a fuss about PACE?
Why is it that for SaS different rules apply when it comes to ME?
6 thoughts on “Sense About Science, the PACE trial and ME.”
You might find some answers here http://www.margaretwilliams.me/2013/role-of-science-media-centre-and-insurance-industry.pdf
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Seconding Mr. Eglington, I would add that, while Peter D. White has been badly bruised by the PACE folly, his colleagues Wessely, Sharpe, and others retain power, influence, and tax-payer compensated time with which to exert such power and influence.
Equally, neither SaS nor the Statistical Association nor any other party has managed to make clear that the price of the PACE folly is to be counted in lives destroyed by mis-treated illness. Lives have been destroyed by the psychiatric school largely stopping proper research and treatment everywhere with their fraudulent information that CBT and GET can treat and cure. Lives have been destroyed more immediately by the outcomes of GET, shown to greatly worsen the condition of a majority of those forced to undertake it.
While no one reports how many excess deaths have resulted from the hegemony of biopsychosocial theories in the treatment of ME, the WHO method of assessing DALY will confirm equivalence for losses of life. To take a human life is a capital sin. The UK charities have been very shy — as are most UK citizens — of making a scene.
Therefore, I am inclined to theorize that essentially all of Britain has failed to recognize the severity and true cruelty and evil of a PACE trial that put corporate ends and personal prestige above respect for the sanctity of human life. It needs to be recognized that the problems with PACE are only partly about it being a dog’s dinner of statistics; much more important is the extraordinary contempt shown for the sanctity of human life. The corollary of “Millions Missing” is “Patients’ Lives Matter.” The MRC, the SMC and the individuals who have built their fame and fortune on the destruction of patients’ live clearly do not agree that “Patients Lives Matter.”
This is so powerfully and beautifully written. Also dead on. I’ve begun an awareness campaign about ME/CFS that began with a petition, but I plan to go so much further than receiving adequate NIH funding, although it’s at the top of the list right now. The public simply has not seen the damage, suffering, heartache and devastation that not just this disease causes, but the mishandling of those in power of this disease. There’s no way that some of what’s happened already isn’t criminal activity. But for now, my campaign is to get through to Collins at the NIH and get a firm promise in NUMBERS, not in vague wording about “future groups to help further the understanding and building centers for excellence blah blah blah, screw you. I want a number, preferably 100 million. And I want it to go to experts and specialists who understand and know the illness, who already have studies or plans for studies and research underway, but lack the funding. I want people like Ron Davis, Ian Lipkin, Nancy Klimas.. experts from across the field who are after specific BIOLOGICAL results. Not a penny more to this psychiatric bullshit. Enough already. 30 years, it’s enough. So anyway, I’m starting there 😉 But my plan is to then expose the many flaws and issues with the way this has been handled, and to put a human face to me/cfs. Because people need to see it, feel it, and know that they or their child could easily be next. I hope yall will help in the upcoming week or two as I take on the people and agencies (through social media etc) that have destroyed lives and perpetuated falsehoods that have set us back decades. But for starters, I just hope you’ve signed the petition. Great post John, thank you for your writing on this crucial matter. I’ll be keeping up here 🙂
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Thanks, Mary, and good luck with all your work. Keep us up to date with it all on social media.
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Severe ME is a lifetime of many layers of intractable suffering. Patients are forced into severe ME by GET. It is time it was recognised as culpable medical abuse, the equivalent of torture…except torture usually ends at some point.
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