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Some of the confidential information consisted of personal statements made by patients to a number of high‐
profile Professors and Consultants involved in the Scottish Neurological Symptoms Study, including
Professor Richard Warlow; Dr Richard Davenport; Dr Colin Mumford; Dr Christian Lueck (now an
Assistant Professor in Australia); Dr Cathie Sudlow; Dr Roger Cull and Dr Adam Zeman.
The large‐scale study from which the confidential data was leaked was co‐authored by Professor Michael
Sharpe and Dr Alan Carson and was looking at the prevalence of medically unexplained symptoms (MUS)
in new patients attending Scottish Neurology clinics, particularly at: “illness‐related beliefs and behaviours, what
predicts poor outcome, and how these patients are currently managed”.
The study stated that patients with MUS place a “substantial burden on both the NHS and the economy
generally”. It concluded that “nearly a third of patients attending Scottish Neurology clinics have medically
unexplained symptoms” which, given the well‐published beliefs of Professor Sharpe, is an unsurprising
conclusion.
Sharpe (who, with other members of the Wessely School, works for the medical and permanent health
insurance industry) has intransigent beliefs about people with MUS, in which he includes patients with
ME/CFS.
This serious breach of confidentiality by Professor Sharpe was reported by Ian Johnston in The Scotsman on
19 th August 2005. The University of Edinburgh promised to launch an investigation; a spokeswoman said at
the time that Professor Sharpe had been made aware of the situation but was on holiday.
It seems that he was not censured in any way.
This event makes clear that there cannot be any guarantee of confidentiality for PACE Trial participants, and
indeed there has already been a serious loss of PACE Trial confidential data.
On 31 st March 2006 Peter White wrote to the West Midlands Multi‐centre Research Ethics Committee to
inform them of the theft of a digital audio recording (DAR) of GET sessions from Centre 03 (which is King’s
College, ie. Trudie Chalder’s Centre). This confidential information was stolen from an unlocked drawer in
the therapists’ office. Peter White informed West Midland MREC that: “There are no lockable cabinets in
any of the therapists’ rooms so the drawer was not locked” (cf SSMC Participant Information Sheet). His
letter continued:
“The burglary was reported to Southwark police on the day that it happened, which was Wednesday 22 nd March 2006.
The crime number is 3010018‐06. The therapist was away on leave 22 nd ‐24 th March and therefore the DAR was not
found to be missing until Monday 27 th March 2006”. It was only after the theft that Professor Trudie Chalder
sought advice on how to secure the data properly.
The letter also said: “The Principal Investigator for this centre, Professor Trudie Chalder, is awaiting advice from the
Trust R&D as to whether the affected participants should be made aware of the theft”.
The same letter stated that recordings were being downloaded to CD only on a monthly basis, a working
methodology that is not compatible with the promises of confidentiality set out in the “Invitation to join the
PACE trial” leaflet.
The letter carries a handwritten annotation dated 13 th April 2006: “Noted. Sad! No action needed”.
It seems that the patients involved were not warned that confidential information about them had been
stolen.