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

CONCLUSION
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To quote from a recent article in The Times: “ ‘It’s like a battlefield,’ says Dr Neil Abbot, operations director of ME
Research UK. He describes the lot of the ME patient as a ‘Kafkaesque nightmare’… Stephen Holgate, professor of
immunopharmacology at the University of Southampton, chairs the Medical Research Council’s expert group on
CFS/ME. ‘As a clinician who sees patients with this group of diseases I recognise there’s a real thing here, it’s not all
psychiatric or psychological’, he says. ‘Unquestionably in some of these patients there are abnormalities and
biochemical changes in the brain, the central nervous system, the spinal cord or the muscles’. Such is the hostility
engendered by the debate that medical professionals who view ME as a psychiatric disorder declined to contribute to the
article. In 2008‐09 the MRC spent £728,000 on ME/CFS out of a total research budget of £704.2 million. The MRC is
ready to commission more research on ME, he says, but the stigma and scepticism associated with the condition do not
make it an attractive option for top quality scientists. ‘The debate is so polarised that scientists are frightened to get
involved’, says Holgate. ‘My aim is to get everyone round the table, so that instead of people throwing bricks at each
other we can agree on the priorities, get some quality proposals written up and build confidence in the research
community. The need for more research is urgent because what’s happening now is unacceptable for patients and it’s
costing the Government a lot of money’ ” (http://tinyurl.com/yeha84b).
Notwithstanding, the Wessely School remain certain that “CFS/ME” is a primary psychiatric disorder and
the PACE Trial is predicated on this belief, despite international concern that broadening the case definition
to include psychiatric “fatigue” (as the Oxford criteria do) can only obfuscate matters: “During the last 15
years, estimated rates of CFS have dramatically increased in both Great Britain and the United States. We suggest
that the increases in both the United States and Great Britain are due to a broadening of the case definition
to additionally include cases with primary psychiatric conditions. Using a broad or narrow definition of
CFS will have crucial influences on CFS epidemiological findings, on rates of psychiatric co‐morbidity, and
ultimately on the likelihood of finding a biological marker” (LA Jason et al; How Science Can Stigmatise:
the Case of Chronic Fatigue Syndrome. JCFS 2008:14:4:85‐103).
The need for more exact selection of participants has been highlighted by ME/CFS international expert
Professor Nancy Klimas from Miami, most recently on 21 st January 2010: “…when scientists define an illness,
they do so to go after the group that has the illness, trying to exclude as many similar illnesses as
possible”(http://tinyurl.com/yex98m8).
This is the exact opposite of what has occurred in the PACE Trial, which intentionally amalgamated many
different states of what the PIs continue to regard as “medically unexplained fatigue”; as noted in Section 1
above, Professor Sharpe is on record as affirming: ““We want broadness and heterogeneity in the trial”
(“Science and ME”, International Science Festival, 9 th April 2004, Edinburgh).
This was further confirmed by Professor Peter White: “…we need to widen the net to capture all those people who
become so chronically tired…that they can’t live their lives to their full potential” (Population Health Metrics
2007:5: 6 doi:10.1186/1478‐7954‐5‐6). By combining all those who become “chronically tired” specifically in
order to increase “generalisability” of their own anticipated findings, the Wessely School render the results of
the PACE Trial inapplicable to those with true ME.
At the Institute of Clinical Research & European Medical Writers’ Association Joint Symposium held on 24 th
February 2009, Abhijit Chaudhuri, Consultant Neurologist and ME/CFS specialist, spoke on “Recruiting
Patients: Trials and Tribulations” and said that the most important issues for investigators and trial
participants are whether the trial is asking a relevant and scientifically sound question, and the risk to
benefit ratio of taking part. He also said that for a successful trial, it was essential that the protocol had
“well‐designed inclusion and exclusion criteria”, which appears not to be the case with the MRC PACE
Trial, given the intention to use such a broad definition of unspecified “chronic fatigue”.