Dear Sir Liam,
Chief Medical Officer
The Department of Health
Room 114 Richmond House
London SW1A 2NF
Dr Ian Gibson
Secretary of State
for your reply to our letter of 26 July 2006.
reaction to your reply was disappointment. As families with people
with ME we are used to receiving standard templates as replies to
our questions from the Secretary of State for Health or her
ministerial assistants which are routinely dispatched to parents and
carers of people with ME, as well as to sufferers of ME. However,
from the Chief Medical Officer we expect something different.
really is absolutely no point in wasting time trotting out the same
old, tired phrases in relation to ME. We have long since got past
the stage where there is any doubt about the organic nature of
Myalgic Encephalomyelitis. It is now surely beyond doubt, even by
DoH standards, that ME is a biological illness and the only way
forward is to provide funding for biomedical research.
that the statutory responsibility for informing local authorities of
illness lies with the attending doctor. You write that only certain
conditions are notifiable under the Public Health Act and that these
are diseases that are potentially life-threatening.
if you have heard of the recent case of Sophia Mirza who died of ME
– as noted by the coroner. Hers is not the first case of death from
ME in the UK – Richard Senior’s wife’s death was also recorded as
being caused by ME (although in this country the term CFS is used
due to other major issues regarding the perception and treatment of
ME). You can read about Sophia Mirza on our web page at –
It isn’t the first case – yet how much statistical data have you
collected on this subject?
explain why an illness which is five times more prevalent than
HIV/AIDS in the UK, and which kills, is not notifiable under the
Public Health Act and according to your own interpretation of that
Is the CMO
powerless to feed in new information that results in action under
the Public Health Act when he knows the evidence warrants it?
mention that these illnesses require notification to prevent or
minimise the spread of infection. Are you aware of studies which
possibly identify cases of ME as epidemics?
Have you not
seen the information about ME that has been compiled in the work of
Dr Betty Dowsett and Jane Colby of Tymes Trust? These studies along
with those of Dr Nigel Speight have clearly shown that ME-CFS is a
major illness responsible for most school absenteeism. Apart from
being “potentially life threatening, it is spread rapidly and
cannot be easily treated or cured”. We are surprised that the
CMO does not know this. Is it unreasonable to expect that the CMO
should be aware of the literature and the presentations made at the
Invest in ME Conference in May 2006 and other conferences?[The
CMO was invited to the ME Conference]
estimated 250,000 people suffering from ME in the UK alone we do not
seek platitudes. Of course there has been considerable debate - much
of it characterised by confusion, misrepresentation and deception.
The debate in the House of Lords lead by the Countess of Mar,
January 22nd, 2004 forced a response from Lord Warner the
Health Minister, Feb 11th 2004, that the Department of
Health accepted ME was a neurological illness under WHO
classification, ICD-10 G.93.3 and that this information would be
communicated to the medical profession and corrections made to other
official statements that were not in agreement with this fact.
The reply was
full of equivocation and misinformation and, although some official
statements have changed, it is clear that the official stance has
not, with the perpetuation of psychiatric models of ME-CFS
continuing at official treatment centres that have been massively
funded and supported by the Government but rejected by patients and
instructive that the latest version of ICD-10 6th version
has removed CFS from chapter G.93.3 where only ME and PVFS are
what you say there is now incontrovertible evidence of the
biological nature of ME. We are not talking about CFS – we are
talking about Myalgic Encephalomyelitis. The fact that the
psychiatric lobby, supported by insurance and pharmaceutical
companies, continue to group ME in with CFS should be seen as
nothing but a shameful episode in UK healthcare.
statement that “No one has provided conclusive evidence to
support any view [of the illness]” is disingenuous in the
extreme if not Machiavellian. You must surely know of the work of
Dr. John Richardson, Dr. Byron Hyde and the Nightingale Foundation,
or the work of Chia, Kerr, Speight, Archard and Muir; all pointing
to enteroviral illness? You cannot be ignorant of the extensive
studies that have shown an underlying mechanism that describes an
aberrant immunological response that leads to ME as a chronic
multi-system, multi-organ illness – shown by Der Meirleir,
Suhaldolnik and others? This model also leads to an understanding of
why other viruses (such as HHV-6, adeno- and parvo viruses, and
intracellular organisms, borellia, Chlamydia, rickettsiae) evoke a
similar spectrum of symptoms.
seemingly appear to accept the psychiatric model involving
somatisation and the biopsychosocial theory as valid and seem
unaware of the devastating criticisms of these views by Per Dalen,
and McLaren. This is to fail to get informed through the literature
and act accordingly. Although it is always possible to demand more
research and more evidence there is now an overwhelming weight of
evidence in support of the organic nature of ME
can be no doubt now that ME is of organic nature. The theories which
have been given the lion’s share of research funding in the UK are
centred wholly around psychiatric paradigms for treatment.
If one is
only looking in one direction then one will find just the one
that your “personal interest” in ME refers to the Working
Group Report – a report which many see as shrouded in controversy
and deception and which, in the end, satisfied no one - neither the
ME support groups nor the psychiatrists were able to sign the final
report and this did not include key appendices that expressed views
that addressed ME as an organic illness and offered treatment
As for the
MRC and an Independent Scientific Research Advisory Group - the MRC
has systematically refused to fund research from internationally
recognised research groups that are carrying out first class studies
in the field of ME. Yet millions of pounds have been allocated to
support poorly designed and badly executed psychiatric studies and a
whole network of clinics established that have been rejected by ME
patients despite coercion and other unsavoury practices.
How can you
allow this to go unchallenged? How can people who are charged with
responsibility for the health of the public ignore the evidence
(practically all from privately funded research) which clearly
points to the biological nature of ME?
It is to the
shame of the MRC and Government that patient groups and
organisations have themselves provided funding of seminal studies in
the field of ME. These have shown the inadequacies of the CDC
definition used in most research studies that mean their conclusions
are utterly compromised, shedding confusion rather than clarifying
the situation. Is this is all we can expect from a Government that
“funds to support policy”. All research is sullied and compromised
as a result and patients suffer.
unacceptable to say that “Other complex illnesses such as
diabetes and multiple sclerosis have established treatments and are
successfully managed and researched without complete knowledge of
their causes.” As you are surely aware both these illnesses were
regarded as psychiatric until insulin and MRI were discovered.
Although there is much to learn about the details of these illnesses
our present understanding and treatments have emerged from careful
research studies that have exposed the inadequacies of the
Are you, as
Chief Medical Officer, advocating a similar perpetuation of
ignorance with regard to cancer research, HIV, or rheumatoid
neither MS nor diabetes has to be proven to the public or DoH that
it is of organic nature. Yet still your department allows the false
impression that ME is possibly a psychiatric disorder. In this you
fail sick people and their families – many of them children.
is required is proper biomedical research into ME and the funding
that goes with it.
If you have
really taken a personal interest in ME then why is it we hear
nothing from you when hundreds of thousands of lives in the UK are
money, which should be going to proper biomedical research, in fact
directed to a psychiatric lobby who use out of date and flawed
diagnostic criteria to run trials which have no scientific basis for
treating ME and will not benefit ME patients?
modern diagnostic criteria (see the Canadian Consensus Guidelines)
are available does the DoH remain silent on their usage (despite
some NHS doctors already breaking ranks and endorsing them)?
Why do you
continue to remain silent whilst the MRC is allowed to squander much
needed funding on PACE and FINE trials which will provide nothing
for another generation of ME patients and their families?
Liam, are you silent regarding an illness which is more prevalent
than HIV/AIDS or lung cancer?
There is no
doubt about the challenge of ME but this, all the more, needs top
class research workers with top class facilities to engage with it
and to be supported by substantial funding. Such institutions and
research staff do exist and should be funded.
position, if we base it on your reply to us, seems to be one of
obscurantism and indifference which refuses to engage with a major
complex illness that affects about 1 in 250 of the population. The
seriousness of this situation demands immediate and positive action
that involves both research studies and supporting clinical and
So, back to
our original request.
If you put
aside for now the statistics and think of one fact –
People are dying from ME
really need litigation before we can move forward on an illness
which is losing generations of people, many of them children?
entirely with the notion of which you write that it would be
inappropriate to designate ME as a notifiable illness.
By making ME a
notifiable illness (maybe via attending doctors, as you suggest) it
would be possible to collate more exact figures for occurrence and
geography of the illness. It would have a further advantage in
ensuring that children’s lives are not irreversibly disadvantaged
due to lack of awareness. If the demographics were better understood
the Health and Education Authorities could better target their
limited resources for the benefit of these sick children.
We ask you to
reconsider your current position on ME.
We would also ask
that you receive a delegation from Invest in ME, and other support
groups, which we can arrange, and allow us to discuss this with you
face-to-face at your earliest convenience.
Invest in ME