MAGICAL MEDICINE: HOW TO MAKE AN ILLNESS ... - Invest in ME

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The MRC’s denial of any PR strategy in relation to the PACE Trial
Having seen the MRC Minutes quoted above, a request was made to the MRC asking for details of the
PACE Trial PR policy, to which request the MRC responded by saying that there was no PR policy
concerning the PACE Trial.
This was remarkable, because there is a record of the MRC’s concern about the ME Association’s campaign
against the PACE Trial, as confirmed in the letter of 24 th August 2004 sent by Peter White to members of the
PACE team, which demonstrates their intention to counter the ME Association’s campaign to stop the PACE
Trial.
There is also clear evidence of the determination of Peter White and Professor Colin Blakemore (then Chief
Executive of the MRC) quickly to counter any negative publicity and to put their own spin on the story. On
11 th May 2004 Peter White wrote to members of the PACE Trial team saying:
“Dear colleagues, Yesterday The Independent carried an article, which criticized the PACE and FINE trials. This
article and three letters in response are copied below for your information. I am pleased to say that I understand that
the Independent will publish all three letters this Thursday”.
This appeared to indicate that White had secured a promise that a letter that was jointly signed by himself,
Michael Sharpe, Trudie Chalder and Alison Wearden was indeed to be published, as was a similar letter
from Professor Colin Blakemore; the letter from Chris Clark of Action for ME, however, was not published.
After a further exchange of letters with the MRC about its denial of a PR policy for the PACE Trial, a
complaint was made to the Information Commissioner’s Office (ICO).
The complaint was duly investigated and on 14 th February 2008 the ICO’s decision was despatched. From
the ICO’s investigation, it is clear that there was a PR policy for the PACE Trial, and that the Trial Steering
Committee did plan a PR policy as described in the Minutes, and the meeting referred to in those minutes
did take place in May 2004, but it seems that there was no “formal” note of that meeting.
The MRC was compelled to confirm to the ICO that there was initially a very serious intention to develop a
PR strategy for the PACE Trial.
As noted above, the ICO’s decision letter notes: “The MRC has expressed its concern about how you came to be in
possession of the first Minutes of the TSC”. It seems that communications at the MRC may not be of the highest
order.
Notwithstanding the content of those documents, the ICO said it was satisfied that, despite the initial
intention, there was no “formal” managed PR strategy in place at the MRC for the PACE Trial.
Despite such clarification from the ICO, many in the ME/CFS community remain less than convinced.
Confidentiality of PACE participants’ data
PACE Trial participants were promised that their data would be secure.
The “Invitation to join the PACE trial” leaflet assured participants of confidentiality:
“The data and recordings we collect will be securely stored for 20 years after the end of the trial, for your protection and
to follow good clinical practice (GCP). The same applies to other records gathered for our study, including your medical
notes and the database holding the collected data from the trial. Your name, address and telephone number will be on