ME/CFS -Promises, Promises ?

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Promises, Promises ?

~~~~~~~~~~~~~~~~~

Margaret

12th May 2007

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 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 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.