In the meantime a recent All Party Parliamentary Group meeting on ME/CFS heard testimonies from various sufferers, carers and their representatives:

Christine Harrison from BRAME asked who would take responsibility if health professionals follow the NICE guidelines promoting Cognitive Behavioural Therapy and Graded Exercise Therapy and patients are mismanaged, misdiagnosed or experience a serious deterioration in their health, or even die?

Under the current system, the severely affected are sometimes taken into care against their will, and forcibly removed from their home, despite their families’ protests.

Criona Wilson described the tragic circumstances of her late daughter, Sophia
Mirza, who was treated as mentally ill by doctors and sectioned before her death.

It took an autopsy to prove that her spinal chord was inflamed. Christine Harrison and Di Newman confirmed that Sophia was not a solitary case. Christine had been in contact with a number of parents whose children with M.E. have been sectioned or lost their children completely in their 20s or 30s.

Dr Charles Shepherd highlighted that people with M.E. suffered financially, by
losing benefits, when the psychosocial model was used. NICE had to accept the WHO classification of M.E. as a neurological illness.

Di Newman said the draft guideline is already turning back time for those GPs who have accepted that M.E. is a physical illness and that terms like “biopsychosocial” are used by insurance companies which do not want to make payouts to people with M.E.

Dr Crawley from the National Institute of Clinical Excellence (NICE) said she believed in the biopsychosocial model of the illness…

See:  http://www.afme.org.uk/res/img/resources/APPG%20minutes%2022-02-07.pdf

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Promises, Promises? - Margaret Williams 12th May 2007

 http://www.meactionuk.org.uk/Promises_Promises.htm


Today is international ME/CFS Awareness Day. Today Gordon Brown MP,
currently Chancellor of the Exchequer, launched his campaign to succeed Tony
Blair as leader of the Labour Party and become Prime Minister of the United
Kingdom. At 8.30am on the BBC Radio 4 "Today" programme, Brown began to
speak of a "new Government" and announced his plans for the NHS, making it
plain that there is to be more of a role for patients to play in improving
healthcare. He spoke of patients having more control and more choice, and
he said that what patients want is for their needs to be taken seriously.
He promised to address the concerns of people about the NHS and said that
one of those concerns is access to healthcare and he promised to concentrate
on this. He said he would be going round the country "listening to what
patients tell me" and that he would be "working with patients" and
"understanding peoples' concerns".

This seems a remarkable reversal of his previous persona that was said to
include insulting and contemptuous treatment of his fellow Cabinet Ministers
and his reputation for being a control freak: on 21st March 2007 an article
by former Cabinet Secretary Lord Andrew Turbull in the Financial Times was
uncompromising: "There has been an absolute ruthlessness with which Gordon
has played the denial of information as an instrument of power".

As far as ME/CFS is concerned, the denial of information used as an
instrument of power has been the hallmark of Blair's Government, of which
Gordon Brown has been an influential member for the last ten years, so are
his words today just empty promises? Will his plans include those with
ME/CFS or will this particular patient community continue to be excluded
from appropriate NHS investigation, care and support as at present?

It was in September 2001 under Mr Blair's Government that the UK Department
of Health produced "The Expert Patient: A New Approach to Chronic Disease
Management for the 21st Century". This promised to utilise the knowledge
and experience of patients themselves and promised that patients with
chronic illnesses could become key decision-makers in the treatment process
in partnership with healthcare providers. It stated: "The era of the
patient as the passive recipient of care is changing and being replaced by a
new emphasis on the relationship between the NHS and the people whom it
serves, one in which patients are empowered with information". Its key
recommendation was to "promote awareness and create an expectation that
patient expertise is a central component in the delivery of care to people
with chronic disease". The timetable for the full implementation was given
as a six year period from 2001, with the programmes to be mainstreamed
throughout the NHS by 2007.

This excellent strategy may apply to other disorders but it demonstrably
does not apply to ME/CFS. As far as ME/CFS is concerned, it was nothing but
an empty promise, as is only too obvious from the subsequent actions of
bodies such as the Medical Research Council (MRC), whose members and
advisers have become ever more trenchant in ignoring not only patients'
knowledge and expertise but also the scientific evidence upon which
patients'
knowledge is based.

The National Institute for Health and Clinical excellence (NICE) likewise
has totally ignored the huge input from informed patients that was submitted
during its so-called consultation process on "CFS/ME" and has continued to
dismiss and exclude this solid source of knowledge and expertise.

Equally, in the publication of its policy document "The Occupational Aspects
of the Management of Chronic Fatigue Syndrome: A National Guideline" in
October 2006, NHS Plus has been even more forceful in totally excluding
patients' expertise and experience to the extent that it undoubtedly puts an
unknown number of patients at serious risk of harm. In an unprecedented
action, a total of 18 UK ME/CFS charities have signed a joint statement
expressing extreme concern at the bias expressed in the policy document and
are calling for its withdrawal (see  http://tinyurl.com/3bh4af ).

Underpinning this resolute exclusion of ME/CFS patients' knowledge and
expertise seems to be the direct intention of ignorant and ill-informed
Ministers who favour the Blair Government policy about ME/CFS and who seem
determined to accept the flawed advice of psychiatrists of the Wessely
School that ME does not exist except as an aberrant belief and that CFS is a
behavioural disorder.

All that this policy delivers for those with ME/CFS is a "management regime"
that is handed out by about a dozen "specialist Centres" and which is
designed to change the way patients think about their illness. There are no
advanced investigations carried out at these Centres to confirm the many
biomedical abnormalities known to exist in ME/CFS and offer the hope of
addressing these abnormalities and no prospects of any cure, nor any
intention to get to grips with the reality of the disorder, since most
Centres are run entirely by mental health workers and occupational
therapists.

This policy is promoted by Professor Lord Richard Layard (dubbed "the
happiness tsar"), who stipulates that psychotherapy must be provided for all
manor of chronic illness with the aim of removing people from receiving
Incapacity Benefit. Last year, Layard published a report calling for a
network of a further 250 centres to be staffed by 10,000 new therapists to
deliver cognitive behavioural therapy, which in the case of ME/CFS includes
graded exercise therapy (CBT/GET). However, Layard himself seems to be
back-tracking, now conceding: "I've never said CBT is a magic bullet"
(Happiness tsar warns of therapy funding shortage. Sophie Goodchild. Chief
Reporter, The Independent, 6th May 2007).

CBT/GET is already known to be at best ineffective and at worst
life-threatening in ME/CFS; it is widely acknowledged that the financial
logistics of recruiting, training and supervising the extra 10,000
"therapists" seem currently insurmountable, so on what reputable evidence
was £11.1 million provided to the Wessely School psychiatric lobby to
promote and provide this "rehabilitation" regime when it was already known
not to work? The MRC has funded these psychiatrists to the tune of £2.6
million for the PACE and FINE trials which -- against universally accepted
principles of research -- intentionally include a mixed patient population,
whilst the remaining £8.5 million has gone into setting up the existing
CBT/GET Centres to deliver this regime even before the outcome of the flawed
trials is known.

It was thirteen years ago that the BMJ published an Editorial by DG Altman
(The scandal of poor medical research. BMJ 1994:308:283-284). Altman did not
beat about the bush:

"What should we think about researchers who use the wrong techniques, either
wilfully or in ignorance, misinterpret their results, report their results
selectively, cite the literature selectively, and draw unjustified
conclusions? We should be appalled. Yet numerous studies of the medical
literature have shown that all of the above are common. This is surely a
scandal. Huge sums of money are spent annually on research that is seriously
flawed through the use of inappropriate designs, unrepresentative samples
and faulty interpretation. The length of a list of publications is a dubious
indicator of ability to do good research; its relevance to the ability to be
a good doctor is even more obscure. Carrying out an ill-designed study in
ignorance of scientific principles and getting it published teaches several
undesirable lessons. All too often the main reason for a piece of research
seems to be to lengthen a researcher's curriculum vitae. The poor quality
of much medical research is widely acknowledged, yet disturbingly the
leaders of the medical profession seem only minimally concerned. We need
less research, better research, and research done for the right reasons".

The ME/CFS community would argue convincingly that Altman was right, yet in
awarding the Wessely School psychiatrists so much funding, the MRC has
signally failed to take Altman's warning on board. It is patients who are
continuing to pay the price of the MRC's arrogance in dismissing ME/CFS
patients' expertise.

At the recent highly successful Invest in ME international conference held
in London on 1st-2nd May 2007, the issue of these psychotherapy Centres
arose. In his usual robust manner, Professor Malcolm Hooper was critical of
them (on the basis that they cannot possibly help those with complex
neurological disease to recover and the only regime they offer -- CBT/GET --
could be potentially dangerous for some people with ME/CFS). He was
dismayed to hear from one or two attendees that the Centres were better than
nothing at all, a sentiment with which he disagrees. He was even more
dismayed to hear the view from some attendees that the Centres should be
supported by the ME/CFS community on the grounds that if patients do not
attend these Centres, they will forfeit their entitlement to State and
insurance benefits. When the Countess of Mar became aware of such a view,
she was reported to have remarked that if this state of affairs is true, it
is illegal.

Lady Mar was therefore asked directly if she had said this, and by email on
11th May 2007 she replied: "During the Committee Stage of the Welfare
Reform Bill - debates from Clause 9 onwards in the Lords, I managed to
extract from the Minister statements to the effect that people with CFS/ME
would not be forced to do CBT/GET in order to continue to get their
benefits".

That debate is recorded in Hansard (Lords) on 28th February 2007, column
GC198:

Countess of Mar: "If a group of people refuses graded exercise and
cognitive behaviour therapy, on the basis either that they are afraid or
that they know it will not help them, will they be penalised?"

Lord McKenzie of Luton (Parliamentary Under-Secretary, Department for Work
and Pensions; Labour Peer): "there is no requirement for individuals to
carry out any specific type of activity or treatment. That cannot be
sanctioned".

That seems clear enough but is it, too, just another empty promise?

It seems curious that neither the ME Association nor Action for ME - in
whose respective charters is embedded the promise to act in the best
interests of their members, many of whom are facing the very battle that the
Minister has pronounced upon -- has seen fit to draw national attention to
this momentous statement by the Minister. Had they done so, it would be
difficult for the Minister's promise not to be honoured by Departments of
State and by the medical insurance companies (as well as the company that
administers NHS retirement pensions) without total loss of probity, as the
whole world would have been made aware of it, but it seems to have been
received with deafening silence.

Given that the MRC, NICE, NHS Plus and other Ministers have failed to keep
the promise set out so clearly in the Expert Patient programme, it is
imperative that neither Gordon Brown nor Lord McKenzie of Luton be allowed
to escape personal accountability for their respective and very public
promises.

www.meactionuk.org.uk