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

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Collins J who found that the UK Government had failed to comply with a European directive to protect
people from the possible harmful effects of exposure to toxic chemicals; the reason given was that “a
balance needed to be struck between the interests of the individual and the community as a whole”.
Clearly, it seems that in the UK, the sick individual is now legally unimportant.
At the meeting on “ME and CFS” held on 11 th July 2009 in the series “Medicine and me – Hearing the
Patient’s Voice” at the Royal Society of Medicine, Stephen Holgate, MRC Professor of Clinical
Immunopharmacology at Southampton, spoke on “ME: a research orphan for too long”.
His talk built on the presentation he gave in April 2009 (“Setting a new research agenda for CFS/ME”) at the
CFS/ME Clinical and Research Network Collaborative Conference held at Milton Keynes (an alliance mostly
between the MRC and Government–funded charities including Action for ME and The Association of
Young People with ME at which Professor Mansel Aylward was an invited speaker).
At the RSM, Professor Holgate said that ME/CFS has never really fallen into the neuro‐scientific domain, but
has been considered as a form of neurasthenia and as such was rejected by medicine, an image that has
stretched to the present day; due to that history, there has been little research into the condition. He asked
what has gone wrong, and why is not more known about ME?
He made the point that at the MRC, referees tend to reinforce the status quo, but the area of ME research
needs to be opened up, as ME is a systems disorder and in 2009, for the first time, we are embracing
complexity. He said that “ME/CFS” covers 25 or more conditions but that the Government will not
permit integrated research. He said the new science is trying to apply new technologies. He talked about
the “omics”: genomics, proteomics and metabolomics.
Professor Holgate asked rhetorically how the ME situation could be improved, saying that it is necessary to
get people involved in very serious science, and that he has tried to get the MRC involved in this: he spoke
about his wish for an MRC inter‐disciplinary group involving immunologists and neurologists, but then
said that he was not sure if it would happen.
What Professor Holgate said about the MRC referees reinforcing the status quo would seem to indicate that
the Wessely School’s stranglehold on funding for biomedical research into ME/CFS will continue for as long
as UNUMProvident continues to dictate Government policy about this devastating disease.
The ignoring of patients’ experiences
No amount of behavioural therapy can feasibly reverse the pathology that has been shown to be present in
ME/CFS, any more than “correct thinking” can cause an amputated limb to regenerate.
To support patients who must learn to live with life‐wrecking diseases such as ME/CFS is one thing (and no‐
one could object to such support) but, despite their claims, this is not what is being offered to ME/CFS
sufferers by the Wessely School ‐‐ what is being offered is restructured thinking, the aim of which is to
correct what the Wessely School deem to be “aberrant beliefs” in order to convince patients that they do not
suffer from an organic disease. As Wessely himself has confirmed, his form of CBT is directive, not
supportive (see above).
There is no evidence that interventions that are informed by the Wessely School’s theory are successful in
ME/CFS. This is despite the fact that their theory has been in existence for over two decades and has been
widely applied, including by Wessely himself. Anyone who discovers an effective intervention for ME/CFS
will become instantly respected amongst patients and medical professional alike. Such acclaim for the
Wessely School is noticeable by its absence.