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NICE Guideline on CFS/ME: Judicial Review judgement

Posted by meagenda on March 13, 2009

@ 11.50 am From the ME Association website:

http://www.meassociation.org.uk/content/view/814/161/

High Court supports ME treatments that are ineffective or harmful

The legal challenge to the NICE Guideline on ME/CFS was lost in the High Court today – when it was dismissed by Mr Justice Simon. More details later. Please find The ME Association’s immediate response below.

People with ME/CFS now face a situation where doctors will continue to recommend two forms of treatments that many people with the illness find ineffective or even harmful.

The ME Association is disappointed that the High Court Judicial Review of the NICE Guideline on ME/CFS found in favour of NICE.

Recommendations that two controversial treatments – cognitive behaviour therapy (CBT) and graded exercise treatment (GET) – be offered as front-line treatments for those with mild to moderate forms of the illness remain unchanged.

This is despite the findings of the largest-ever survey of ME patient opinion carried out by The ME Association last year which found that only 26% were helped by CBT – while 56% reported that GET made them feel worse.

The ME Association believe that the two people with ME who took up the legal challenge were fully justified in seeking a court hearing into the processes used by NICE to draw up the Guideline.

Despite the Judicial Review failing to result in withdrawal of these potentially dangerous guidelines, The ME Association maintains that the evidence relating to both clinical and cost effectiveness does not justify the emphasis and optimism being given to these two treatments. NICE’s recommendations cannot be justified by the evidence.

We shall continue to ask NICE to review the contents of what we maintain is a seriously flawed and unhelpful Guideline.

Note to Editors:

For further comment from The ME Association, please contact our Publicity Manager, Tony Britton

Tel: 01406 370293, Mob: 07880 502927

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@ 11.45 am 

Verbal report from someone who attended the Court Verdict is that both JR cases have been dismissed by Mr. Justice Simon .  No news on any appeal.

As soon as a formal announcement has been published I will update.

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http://www.google.com/hostednews/ukpress/article/ALeqM5jY7YMIkyWbSsduNMFaQ9r-kdN_dQ/

Press Association | 13 March 2009

ME sufferers await court ruling

Two ME sufferers are going to learn whether they have won their High Court challenge over a medical watchdog’s new guidance to NHS doctors for treating their condition.

Lawyers for the two men say the guidance, issued by the National Institute for Health and Clinical Excellence (Nice), unlawfully restricts the range of treatment available.

Kevin Short is a university graduate, of Waddington Street, Norfolk, and Douglas Fraser, from London, a former professional concert violinist with the Scottish Philharmonic Orchestra.

Both suffer from Myalgic Encephalomyelitis (ME), or chronic fatigue syndrome (CFS), which affects an estimated 250,000 people in the UK

Their careers have been curtailed by the crippling effects of their illness.

At a recent hearing at London’s High Court, Jeremy Hyam, appearing for both men, told Mr Justice Simon the view that the guidelines were biased, or appeared to be biased, was “shared across the ME community”.

The new guidelines were introduced last August for the diagnosis and management of ME.

They recommended that ME sufferers be treated with cognitive behavioural therapy (CBT) and graded exercise therapy (GET) in an effort to alleviate their symptoms.

The appearance of bias arose because various members of the guidelines development group had failed to declare their personal and non-personal interests prior to their selection.

The group itself was constituted of members who, as shown by published literature and declarations and other sources, had a “predisposition” for recommending cognitive behaviour therapy (CBT) and graded exercise therapy (GET).

Posted in CBT, CBT/GET, CFS Clinics, Judicial Review, ME Association, ME Free For All, ME in the media, NICE, NICE CFS/ME guideline, NICE Judicial Review, PACE Trials, Protests, WHO (World Health Organization) | Comments Off

RSM Bristol: Eve of Conference Open Letter, ME Free For All

Posted by meagenda on September 17, 2008

Ed: The opinions expressed in the commentary below are those of Dr John Greensmith on behalf of ME Free For All.

From ME Free For All.org

17/09 2008

Royal Society of Medicine (RSM) Conference, ‘Chronic fatigue Syndrome’, Bristol, 18 September 2008 – Eve of Conference Open Letter, ME Free For All. org

The Royal Society of Medicine (RSM) Conference, ‘Chronic Fatigue Syndrome’, held in London on 28 April 2008, drew an unprecedented amount of correspondence expressing serious concerns – principally: an overwhelming bias towards speakers, who are psychiatrists, or who favour the psychosocial model of M.E. (Myalgic Encephalomyelitis); patients or their representatives not being allowed to attend; a dominant preference for the term Chronic Fatigue Syndrome for M.E., when they are not the same illnesses, nor should be treated in the same way; and recommendation of the treatments Cognitive Behaviour Therapy (CBT) and Graded Exercise Treatment (GET), which are ineffective or sometimes irrecoverably harmful, to which all funding goes, leaving promising biomedical research starved of money and dependent on charity, thus delaying an effective treatment or cure – and there was a peaceful protest of about 16, some in wheelchairs, outside its entrance, on the day.

That there has been nothing like the volume of letters about an identically titled Conference in Bristol on 18 September 2008 and that there will not be any M.E. sufferers at the door, should not be interpreted by the RSM, the M.E. Community of sufferers, their carers, doctors and researchers, the Media or the wider general public as apathy and certainly not as a change of opinion to coincide with the organisers of, or the speakers at, these conferences.

The more likely and quite understandable, reason for there being not only at least the same number of organisations and individuals writing again but new people adding to the postbag is that they have nothing different or new to add and repetition would fall on the same deaf ears as last time. There have been strenuous efforts to organise a similar demonstration of disapproval on the day but it is not difficult to see that, if the vast majority of M.E. sufferers are unable to travel to work or school and a significant proportion cannot get out of their beds or their houses on any day of the year, they won’t be able to travel to this venue for the same reason. It is a matter of inability, not unwillingness.

ME Free For All. org is not able to stand outside the Conference and is not invited in. Nor do we have anything new to add, since the last Conference but we do wish to express our disapproval of this Conference, with equal vehemence, in perhaps the most economical way: ‘For “London” read “Bristol”.’

Yours sincerely

Dr John H Greensmith

ME Free For All. org

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See also entries at:

http://meagenda.wordpress.com/2008/09/15/two-uk-regional-cfs-conferences-in-september-and-october/

http://meagenda.wordpress.com/2008/09/11/bristol-evening-post-9-september-2008-dr-john-greensmith/

http://meagenda.wordpress.com/2008/09/09/rsm-cfs-conference-bristol-18-september

Posted in AYME, CBT, CBT/GET, CFS Clinics, FINE Trial, ME Free For All, ME events, ME in children, NICE, NICE CFS/ME guideline, PACE Trials, Professor Peter White, Royal Society of Medicine, Simon Wessely | Leave a Comment »