Norwich ME sufferer wins court ruling (NICE CFS/ME Judicial Review)

Norfolk Eastern Daily Press

Norwich ME sufferer wins court ruling

JON WELCH  Story at: http://tinyurl.com/55t6gf

19 June 2008 04:30

An ME sufferer from Norfolk has won a significant legal victory after a leading judge declared it “in the public interest” for the High Court to rule on claims that treatments being offered on the NHS are “potentially fatal”.

Myalgic Encephalomyelitis, or chronic fatigue syndrome, has been surrounded by controversy since the first sufferers were diagnosed in the 1980s.

The condition, which affects an estimated 250,000 people in the UK, has often been met with scorn or disbelief and dismissed as being “all in the minds” of its victims.

Kevin Short, a university graduate, of Waddington Street, Norfolk; and Douglas Fraser, of London, a former professional concert violinist with the Scottish Philharmonic Orchestra, have both had their careers curtailed by the condition’s crippling effects.

Both men were outraged when, last August, the National Institute for Health and Clinical Excellence (NICE) issued new guidelines for the diagnosis and management of ME.

They say that, in its guidelines, NICE refused to classify ME as “a disease of the nervous system”, as the World Health Organisation has done, and recommended treatments which they argue are “harmful to patients” or could even prove fatal.

Mr Fraser and Mr Short took their fight to have NICE’s decision overturned to London’s High Court.

Barrister Jeremy Hyam, for the two men, explained that NICE guidelines recommended that ME sufferers be treated with cognitive behavioural therapy (CBT) and graded exercise therapy (GET) in an effort to alleviate their symptoms.

But, Mr Hyam told the court that, far from curing the condition, the recommended treatments could kill patients.

“There is a considerable body of evidence that CBT and GET is harmful to patients in a significant number of cases and GET may prove fatal for some patients,” he said, citing an example of one sufferer who collapsed and died coming out of a gym where they had been engaging in GET.

Mr Hyam argued NICE had failed to take into account any evidence apart from that unearthed by its controlled clinical trials, which he said were not extensive enough.

NICE had made its recommendations “based on inadequate evidence” and “failed to apply rational and consistent diagnostic criteria”, he added.

“Their reasoning is irrational,” he concluded, asking the judge for permission to seek judicial review of the NICE ruling.

Mr Justice Cranston expressed doubt over whether it was the court’s place to rule on medical or scientific matters, but was in the end persuaded that legal issues of “great public importance” were at stake.

Giving his judgement, and granting permission to seek judicial review, the judge said: “There is no doubt that, as with any debilitating condition that a person may suffer, many of us will know someone, or be connected to someone who has ME or chronic fatigue syndrome.

“It is a serious condition and the two appellants in this case have suffered a great deal as a result of it.

“I have indicated that I am very sceptical about the way in which this claim is put. This is not a court of science, or a court of medicine, but a court of law.

“Given that there is this obvious clash between the bio-medical and the psychosomatic theories of the cause of this condition and the great public interest therein, it seems to me that this case ought to go forward to a full hearing,” the judge concluded.

The case will now go ahead to a full High Court hearing at a date yet to be fixed.  EDP24 19.7.08

 

3 thoughts on “Norwich ME sufferer wins court ruling (NICE CFS/ME Judicial Review)”

  1. From John Sayer, Chair, ME Support-Norfolk to Editor EDP EDP:
    EDPLetters@archant.co.uk

    Sir

    One of the main obstacles to obtaining meaningful research into the
    cause(s) and treatment of Myalgic Encephalomyelitis, a neurological
    disease, is confusing it with ‘chronic fatigue syndrome’.

    This confusion is perpetuated by reports like “Norwich ME sufferer wins
    court ruling” (EDP, 19 June), which includes the phrases “Myalgic
    Encephalomyelitis, or chronic fatigue syndrome”, “surrounded by
    controversy”, “often been met with scorn or disbelief”, “dismissed as being
    ‘all in the minds’ of its victims” – and the classic misconception “since
    the first sufferers were diagnosed in the 1980s”.

    ‘Chronic fatigue syndrome’ was a term invented in the 1980s alright, but
    Myalgic Encephalomyelitis was first described in the medical literature in
    the 1950s and has been listed by the World Health Organisation as a
    neurological illness since 1969!

    A little more accuracy in any future reporting, please.

    Yours faithfully
    John Sayer
    (Chair, “M.E. Support-Norfolk”)

  2. It seems the UK charities are quote happy to use a term that does not apply to everyone with ME or CFS. As most people are aware, a neurological condition does not take account of the fact that most people who have ME/CFS have a viral or micro-organism that is implicated in condition. ME at it’s most basic is a swelling of the brain and spinal cord. In the US the term CFS is used by itself or with ME/CFS. I suppose the UK government are using this as a way to divide and rule.

    Here is a list of bacterial infections that have been found in people with ME/CFS:

    Borrelia
    Erlichia
    Mycoplasma M pneumonia
    CMV
    EBV
    Strep pneumonia
    Coxsackie
    HHV6

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