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

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PACE Trial is about “Health economics and societal costs” (Bergen, October 2009) and people with ME/CFS
currently cost the State a great deal of money.
The current edition of the General Medical Council’s “Good Medical Practice” requires that every registered
medical practitioner must “Keep your professional knowledge and skills up to date” (http://www.gmc‐
uk.org/guidance/good_medical_practice/duties_of_a_doctor.asp).
To reiterate: since the general body of knowledge known about by other clinicians and researchers
working in the field of ME/CFS is now so great, the question repeatedly asked is: at what point will that
body of scientific knowledge be so great that it will be considered serious professional misconduct to
ignore it and to continue to deceive patients by pretending that it does not exist?
On 27 th January 2010, The Independent carried a feature on ME in which Jane Colby, Executive Director of
The TYMES Trust, said: “Unfortunately, we are in a situation where professionals in medicine, education
and social services still do not know how to recognise it and where its terrible severity goes unrecognised”.
One of the Trust’s young members was quoted as saying: “Doctors appear uncomfortable with the entire subject
and are often dismissive and judgmental. Itʹs completely isolating… even family members get tired of hearing how
utterly ill and bone weary you feel… They say you have good days and bad days; you donʹt: with ME, you have bad
days and worse days mostly. You get tired of always feeling ill and not being able to do anything”.
Nine years ago, the ME Association’s Medical & Welfare Bulletin carried an item about doctors’ attitude to
patients with ME/CFS: referring to a previous article in the April 2000 issue of Medical Matters about the
same problem, the MEA Medical Advisor, Dr Charles Shepherd, wrote:
“Problems with rude, hostile or disbelieving doctors brought in one of the largest responses of the year. Unfortunately,
it seems that when a formal complaint has been made about unacceptable professional behaviour, it becomes extremely
difficult to get anyone in authority – even the General Medical Council – to take the matter seriously. Even so, I still
think that people should make a complaint where a doctor’s attitude has clearly been objectionable or prejudicial to good
clinical care” (MEA Medical & Welfare Bulletin, Issue 2, 2001, page 17).
In 2010, little seems to have changed for the better for the hapless ME/CFS patient in the UK and the
Wessely School myth seems to be alive and well, as evidenced by two registered medical practitioners’
published views about patients with the disorder.
Far from being “the militant ME brigade” as described by “Dr Crippen” (Guardian, 3 rd Feburary 2010) or
the “the Terrorists of Health in full jihadist mode” as alleged by Dr Mark Borigini (Psychology Today; 20 th
January 2010), people with ME/CFS are immensely courageous; they do, however, seek to dispel once and
for all the Wessely School myth that ME/CFS is a mental disorder and they seek urgent change in the
perception of ME/CFS in the UK.
They must now take heart from the message of the President of the International CFS/ME Association,
Dr Fred Friedberg, about the removal of Dr William Reeves from his post as head of (ME)CFS at the
Centres for Disease Control in the US:
“I believe that the leadership change effort of the IACFS/ME over the past several months was critical to
this successful outcome. In particular, strong and compelling testimony from a number of high profile
(ME)CFS professionals…played an important role in publicly airing the long‐standing problems with the
CDC (ME/CFS) programme. The success of this effort shows that the (ME)CFS community can help to
shape and move forward the scientific agenda that confers to (ME)CFS the recognition that it truly
deserves” (3 rd February 2010: http://www.iacfsme.org/ : Co‐Cure NOT: 4 th February 2010).