(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?