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

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The “Invitation to join the PACE trial” leaflet builds on this same assertion: “Some patient surveys suggest CBT
and GET can make symptoms worse – but experts (ie. the Wessely School themselves, who portray themselves
as world‐class experts in “CFS”) believe this happens when the therapy is not used properly or when there isn’t good
professional supervision”.
An editorial by Peter White et al in the British Medical Journal just after the NICE Guideline on “CFS/ME”
was published (BMJ 2007: 335:411‐412) further promoted this belief, claiming that: “effective treatments are
available” and, quoting the NICE Guideline, CBT and GET “show ‘the clearest research evidence of benefit’”.
White also cited what he claimed were two patient surveys carried out by Action for ME, one in 2001 (see
above) and the other in 2004 (“All about ME: an introduction”). The latter reference in the BMJ appears to be
incorrect, because it is not a survey; it is an AfME booklet that simply says about GET (on page 19): “Surveys
carried out by Action for M.E. suggest that graded activity / exercise can be harmful when misapplied”. It seems that
Peter White may have meant to cite the 2003 AfME survey (reference 15 in the published version of the
Protocol) when he asserted that the later survey “showed that this was related to inappropriate advice or lack of
therapeutic support”, a declarative but unsupportable sentence, since an analysis of AfME’s 2003 survey data
reveals no supportive data for Peter White’s assertion.
Furthermore, White seems amnesic about his own 1997 study referred to above (BMJ 1997:314:1647‐1652)
which was categoric: “If patients complained of increased fatigue they were advised to continue at the same
level of exercise”, which clearly disproves his claim that previous adverse events occurred “when the
therapy is not used properly or when there isn’t good professional supervision”.
The short (published) version of the PACE Trial protocol states: “We will also carefully monitor all participants
for any adverse effects of the treatments”. If there is a need to monitor participants carefully, then there must be
possible risks and participants were entitled to know about them and the researchers were obliged to inform
participants of those risks. The 2003 survey by AfME appears to be used as justification for not taking the
risks associated with GET seriously enough. Quite how the unsubstantiated suggestion of a charity that
bears no responsibility for the safety of research participants is deemed to support the safety of the MRC
PACE Trial GET participants is not made clear.
An e‐BMJ response by ME advocate Annette Barclay (http://www.bmj.com/cgi/eletters/335/7617/411#176155)
showed that what Peter White asserted did not withstand scrutiny: “I was disappointed to see Peter White et al
trying to put a ‘spin’ on a patient survey to cover up the very poor success rate of GET. The data from the second
survey mentioned simply doesn’t back up their claims. White et al said that the GET failures reported in the first
survey were down to ‘inappropriate advice or lack of therapeutic support’. However, the survey shows that the 2 nd
group who reported positive experience with GET were the group who had NO professional help at all. This shows
White’s argument about ‘inappropriate advice or lack of therapeutic support’ to be without foundation”. Annette
Barclay also pointed out that Dr Lesley Cooper’s 2000 survey reported that GET made people worse or was
unhelpful in 61.3% of cases, and that the second survey carried out by AfME incorrectly referenced by Peter
White in the BMJ did not use an independent survey company and did not ask the same questions as the
earlier survey, yet of the 54 people who had undergone GET, 59% said that GET was either a negative or
neutral experience. Her response continued: “AfME did not ask how well people undergoing GET were supported
by professionals involved and what difference this support made. They were not asked about ‘inappropriate advice’. It’s
wrong of White to blame GET failures on these factors, rather than GET itself for people with ME”. Annette Barclay
then delivered her punch line, pointing out that the second AfME (2003) survey found that: “the worst type of
professional for a person with ME to see was an Occupational Therapist, a Physiotherapist, or at a Gym. ALL the
respondents who tried GET with an Occupational Therapist or at a Gym reported a negative experience. The Physios
had more mixed results but many negatives….To sum up, the data does not support the spin given by White et al in
their editorial. From the second survey, we know that the majority had a ‘negative’ or ‘neutral’ effect and that these
were treated by professionals – the very people we rely on to give us ‘appropriate advice and therapeutic support’“.
As Tom Kindlon pointed out on Co‐Cure ACT on 11 th September 2009, the large AfME 2008 survey (see
above) found that there was no significant difference between the number of adverse reactions suffered by