I am a ‘blast from
your past’. I was at Sunderland School of Pharmacy and you were at
Newcastle in Clinical Pharmacology when the M.Pharm course in
Pharmacokinetics was developed. Congratulations on your eminent
status and knighthood.
Since 1997, when I
retired as Professor of Medicinal Chemistry, I have been involved
with the emerging and widespread complex chronic multi-system
illnesses (Gulf War Syndrome/Illness, Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome, ME/CFS, multiple
chemical sensitivity, MCS, Aerotoxic Syndrome, organophosphate and
other pesticide poisonings) that are of growing concern and are
medically challenging -- writing and lecturing, locally, nationally
This letter is
linked to my concerns about ME which involves some 240,000 people in
the UK with varying degrees of disability. Some 25% are housebound
or bed bound and have formed their own group,
The 442 page report
“Magical Medicine, how to make a disease disappear”, copy attached
with the press release, together with a copy of my letter to the
Minister, Lord Drayson, currently the Minister responsible for the
MRC, brings together an extensive and fully referenced review of the
literature on ME.
It provides the evidence
supporting my complaint about the MRC PACE Trial to Lord Drayson.
The entire report, the
press release and the letter of complaint have now been circulated
worldwide on the internet and have received much acclaim and support
from the major ME organisations in various countries and numerous
individuals, as well as academic institutions. The report is to be
discussed by the International Association of CFS/ME at its
next board meeting in early March, as confirmed by
the President, Professor Fred Friedberg from the US.
Despite the vast amount of
biomedical literature (some 5000 papers) going back to 1934 and the
classification of ME as a neurological illness by the WHO (ICD-10
G93.3) since 1969, the official UK attitudes as demonstrated by the
MRC, DWP, Department of Health, and to some extent your own
a. ignore all this
show an ideological commitment to a
psychosomatic/behavioural model of the illness which is no longer
recommend only cognitive restructuring techniques (CBT
and GET) that are “not remotely curative” and have been shown to be
of no lasting value and in the case of GET to be positively harmful
(Peter White’s assertion that this is because the interventions have
been incorrectly administered has been shown to lack credibility)
proscribe any investigative tests to identify the
disorder, leading to missed diagnoses and misdiagnosis
support cruel, even vicious, actions that lead to
patients being wrongly sectioned and parents, particularly mothers,
accused of Munchausens’-Syndrome-by-Proxy, MSBP.
the result is that essential benefits and insurance
payments to support patients and their families have not been paid
or have been granted only after protracted and expensive legal
action. All this adds to the burden of the illness for patients and
for those who care for them.
The psychiatrists’ argument that
what they refer to as “CFS/ME” is substantially different from past
epidemics of ME does not withstand scrutiny in the light of current
knowledge. It is beyond question that ME is associated with a
severely disrupted immune system which renders patients more
susceptible to both further viral and chemical challenge and
reactivation of latent viruses and persistent viral-specific
For the psychiatrists to amalgamate
25 different disorders (Holgate, RSM July 2009) and to focus on
“medically unexplained fatigue” whilst ignoring cardinal symptoms of
ME is a travesty of medical science.
Of special concern and relevance are the
legal and ethical requirements facing doctors today, in particular,
the legal requirement for doctors to keep up to date with
developments in medicine and medical science (as
clearly set out in “Good Medical Practice: Duties of a doctor.
The duties of a
doctor registered with the General Medical Council: 'Keep
your professional knowledge and skills up to date'
and 'Never abuse your
patients' trust in you or the public's trust in the profession'
Ignoring vast swathes of evidence is not
keeping up to date. For any registered medical practitioner –
consultant or GP -- to dismiss or ignore this widely available
evidence which invalidates the behavioural model of “CFS/ME”,
together with the prescription of inappropriate interventions, is in
clear breach of the GMC regulations and consequently raises issues
of medical indemnity.
As noted in the
report: “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?”.
The recommendation not to carry out
appropriate investigative tests is inconsistent with the Hippocratic
Oath in its ancient or modern form.
The offering of treatment that is known
even by its proponents to be ineffective is a betrayal of doctors’
responsibility to their patients. Merely to pronounce that the onus
is on the individual doctor, when adherence to NICE Guidelines is to
become compulsory, is unacceptable.
sectioning of patients and false diagnoses such as MSBP represents a
To rely on only a few studies, showing very
modest efficacy, all of which having been shown to have very serious
flaws (as is the case with the PACE Trial) and enshrine this
inadequate information in official directions, publications and
statements from authorised bodies, including NICE, is utterly
unacceptable and dishonours the name of medicine as well as being
destructive of lives of sick people and those who care for them.\
I draw to your attention the
commissioned editorial in last week’s BMJ by Alistair Santhouse, who
you will be aware was a member of the CG53 GDG. Please read the
attached eBMJ response submitted by Horace Reid, a former
long-serving NHS clinician. It was rejected for publication, a fact
that is revealing in itself, given that it is impeccably accurate.
I would ask you in your role as Chairman of
NICE to engage fully with our report and act accordingly to right
the long standing wrongs that people with ME have suffered for the
last 20 years.
With best wishes
In his text Professor Hooper refers to
The 442 page report “Magical Medicine, how to make a disease
disappear”, which may be found by way of the last link on
2. The reply
In reply, professor Hooper received the
following, that I copy from the
from today, from the thread
Professor Malcom Hooper writes to Michael Rawlins in General
From: Professor Sir Michael Rawlins FMedSci
National Institute for Health and Clinical Excellence
To: Professor Malcolm Hooper
2 March 2010
Thank you for your letter and for enclosing "Magical Medicine: How
You are obviously aware that NICE has, in the recent past, been
defending an action for Judicial Review over the ME/CFS guideline we
published a couple of years ago. Although judge found in favour of
Institute the legal costs were considerable. I am afraid, therefore,
am not prepared to enter into any correspondence on this matter.
I am returning your document.
Professor Sir Michael Rawlins FMedSci
I am too
"fatigued" to comment on this now, so I just quote the poster on the
I'd just like to
thank Professor Hooper so very much for all his amazing work for
us all, he is retired, he need not do any of this, he is truly a
man of great compasson and integrity not to mention intellect.
I completely agree
and my only complaint is that, for lack of money to get a fast
interne-connection until July 2009, because of 32 years of ME, I did
not find his excellent texts about ME before the end of
October last year.