To download a copy of The ME Association’s latest political briefing paper, please click here
We hope that a date for the next meeting of the All Party Parliamentary Group on ME will be announced later this week.
Ends
Sufferers of ME are not sufferers of “Yuppie Flu” and supporters of The ONE CLICK Group campaign are not “Yuppie Flu Campaigners”. ME is classified by the World Health Organisation as a neurological illness (WHO ICD-10 G93.3) and we are campaigning for it to be recognised and treated as such, by NICE. For how much longer are journalists going to drag out this denigrating and inaccurate term? “Yuppie Flu” was coined by the media, years ago, and the continued misrepresentation of a seriously debilitating illness which is ruining the lives of thousands of children, as well as adults of all ages, is one of the reasons why this action is necessary. Accurate and informed coverage of ME by the media is always welcomed but please, please journalists, on behalf of all those with children and young people whose lives are on hold because of this horrible illness, let’s see this tired, trite and grossly misleading term buried, once and for all!
Suzy Chapman, carer of young person with ME
One Click Judicial Review – CFS/ME NICE Guidelines
BY FAX AND ROYAL MAIL
27 November 2007
Mr Paul Dacre
Editor
Daily Mail
Associated Newspapers Limited
Northcliffe House
2 Derry Street
London W8 5TT
Dear Mr. Dacre
ME/CFS – NICE Judicial Review
The One Click Health Advocacy Pressure Group has launched a legal action to take the National Institute for Health and Clinical Excellence (NICE) to the High Court for Judicial Review of the CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) Guidelines. This is a major story of national interest. There are over 240,000 sufferers of ME/CFS in Britain. We are puzzled as to the way that the Mail has covered this story and would be grateful for an explanation.
On around the 17 October, journalist x submitted copy on this issue to y. This was provided as an exclusive by us and meant that the Mail would have been the first with this story. Despite this fact and many publication assurances, it simply did not appear.
Instead of the Mail being first with the news, the Evening Standard of its own volition elected to be the first to break this story without our prompting and foreknowledge on the 15 November. The Mail subsequently took the exact copy from the Evening Standard and published this somewhat derogatory piece entitled `Yuppie flu campaigners fight ‘mental illness’ label’ (
http://tinyurl.com/yr7pys
). Despite hundreds and hundreds of comments sent on this article to the Mail’s website by your readers to our certain knowledge, none of these have been published. Not one.
Yet again and has been the case every Tuesday, we were assured that this article on the scientific and consumer interest basis of this story would be published in the Mail in the Health Section – today being but the latest example. It has not appeared. As stated, we are puzzled with the Mail’s position on this story and its coverage to date that is beginning to strike thousands as rather unfair.
We would be very grateful indeed for any explanation that you might so kindly provide for us. If there is anything that we can do to assist matters, we are at your disposal.
Yours sincerely
The One Click Group
http://www.theoneclickgroup.co.uk
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This information is available on THE ONE CLICK GROUP website
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The One Click Group lodged formal Application to the High Court last Wednesday to challenge the CFS/ME NICE Guidelines by Judicial Review. See Press Release and a selection of Media Coverage to date.
This legal case against NICE has the power to change the protocols of how ME/CFS labelled patients have been so badly treated by the psychiatric lobby around the world. What is happening in Britain over this legal challenge will have a global domino effect for patients.
Our case is going tremendously well and we are being assisted by people from everywhere. Our support has been gargantuan. It has been amazing, totally heartwarming and most humbling to witness this at first hand. Our global forces are beautifully gathering to prosecute this case from around the world.
Purposeful attempted destabilisation of the One Click Judicial Review has naturally gone on throughout. It is an ironic compliment and a testament to the power of our work that the One Click Judicial Review is considered to be such a threat by some. We would not be doing our jobs properly with a case like this of such import if such activities were not occurring. All the evidence of this attempted destabilisation has been lodged with our lawyers and all is on file.
I would like to take this opportunity to publicly thank the legal team from Saunders Solicitors LLP and our Counsel Kate Marcus from Doughty Street Chambers for all the excellent work on our case done to date. The team is superb.
Most importantly, I would like to THANK YOU ALL for all the massive worldwide support that you have provided to help One Click with our Judicial Review.
My thoughts and prayers are with you all this Sunday for a better life. The One Click Judicial Review has the legal power to make a massive difference to us all. Please keep up your good work.
Thank you all for globally listening.
Jane Bryant
Director
The One Click Group
INTENDED FOR PUBLICATION
22 November 2007
Sir
RE: WORRY OVER ME CARE IGNORES REAL ADVANCE (Dr Mark Porter’s Medical Notes: 20 November)
Dr Mark Porter has missed the point about why ME (myalgic encephalopathy/encephalomyelitis) charities are opposing the NICE (National Institute for Health and Clinical Excellence) guideline.
Of course, we welcome the conclusion from NICE that ME is a serious and disabling illness – as this is consistent with the World Health Organisation classification of it being a neurological disorder.
And nobody would dispute the fact that psychological treatments such as cognitive behaviour therapy (CBT) can sometimes help people cope with the emotional distress that may accompany any serious physical illness, including ME.
But in the case of ME, NICE are recommending that CBT, or graded exercise treatment, should be the only forms of specific treatment for everyone in the mild to moderate category – even though patient evidence submitted to the Chief Medical Officer’s report found that these expensive courses of treatments are often ineffective (67% in the case of CBT) and may even be harmful (50% in the case of graded exercise).
If everyone with cancer was being offered CBT as the only basic treatment option available they would be horrified. Exactly the same logic applies to people with ME.
Incidentally, the British Psychological Society, who represent psychologists using CBT, have also criticised the inflexibility of the NICE guideline.
Dr Charles Shepherd
Honorary Medical Adviser, ME Association
4 Top Angel
Buckingham MK18 1TH
MEA website: www.meassociation.org.uk
EVENING STANDARD ARTICLE:
WORRY OVER ME CARE IGNORES REAL ADVANCE
Dr Mark Porter’s Medical Notes
I have been surprised by the response to new guidance from the
National Institute for Clinical Excellence (NICE) on how best to
manage chronic fatigue syndrome/ME. I thought patient groups would
have welcomes official confirmation that this is a real, and often
very serious condition, and that most cases can be helped through a
combination of interventions which includes psychotherapy (cognitive
behaviour therapy).
Not so. The inclusion of CBT has upset some campaigners who are
concerned that it will reinforce the misconceptions that CFS/ME is
principally a psychological problem.
It is not “all the mind” but like any long term illness CFS/ME can
have major psychological repercussions. How would your state of mind
be if you had been literally housebound for months?
There is no clear barrier between psychological and physical
illness, it is a continuum that we can ignore at our peril.
Psychotherapy, such as CBT has been used to help people with a range
of primarily physical problems, including intractable pain, MS and
cancer, and while no panacea, it does seem to help a significant
minority with CFS/ME. As such it’s inclusion in the NICE guidance
should be welcomed.
ENDS
21 November 2007
There have been stories in the media about a possible legal challenge to the NICE guidelines. Action for M.E believes this challenge is misguided and will not be supporting it.
Action for M.E.’s position regarding the NICE guidelines was published in the News section of our website in August and in the September issue of our magazine, InterAction. No guidelines are perfect but overall this document represents an important opportunity to drive forward improvements in NHS services so long as the right training is given to healthcare professionals, especially GPs.
Action for M.E. believes that most effective way to improve the quality of care for people with M.E. is to engage in a critical partnership with the NHS, bringing the patients’ voice to the heart of NHS commissioning and service delivery.
We shall monitor the implementation of the guidelines closely and at the same time we shall continue to campaign for more money to be spent on research into the aetiology and pathogenesis of the illness.
Ends
PRESS RELEASE
21 November 2007
The One Click health advocacy pressure group lodged formal application with the High Court today for Judicial Review of the CFS/ME National Institute for Health and Clinical Excellence (NICE) Guidelines. The legal team handling this case are Saunders Solicitors LLP and Counsel Kate Marcus from Doughty Street Chambers. We seek to get these entirely
flawed Guidelines quashed and withdrawn.
In defiance of the substantial biomedical evidence submitted to its Guideline Development Group (GDG), NICE is recommending the inappropriate and potentially dangerous behavioural modification regimes of Cognitive Behavioural Therapy/Graded Exercise Therapy (CBT/GET) as the only management strategy for these patients. These have been shown to do neurological ME/CFS patients considerable harm.
By contrast, the World Health Organisation classifies ME/CFS as a neurological illness (WHO ICD-10 G93.3) and this is accepted by the Department of Health. The United Kingdom government is signatory to the WHO rubric and therefore must abide by this.
The British Psychological Society has publicly criticised the Guidelines for being insufficiently evidence-based and too prescriptive in its recommendations of therapy. Eight of the major ME/CFS charities have declared the Guidelines as Unfit for Purpose.
One Click Group Director Jane Bryant said: “ME/CFS labelled patients, doctors, academics, charities and groups from around the world have provided us with tremendous support for this Judicial Review. We very much look forward to the biomedical ME/CFS evidence being placed in the public domain in the High Court by us.”
Professor Anthony Komaroff from Harvard Medical School said: “There are now over 4,000 published studies that show underlying biological abnormalities in patients with this illness. It’s not an illness that people can simply imagine that they have and it’s not a psychological illness. In my view, that debate, which was waged for 20 years, should now be over.”
The One Click Group seeks to finally bring this debate to a most timely end through the High Court.
- ends -
For further information, please contact The One Click Group
Email: mail@theoneclckgroup.co.uk
Website:
http://www.theoneclickgroup.co.uk
Information for Editors
One Click Bio
http://tinyurl.com/yvaky6
British Psychological Society Press Release
http://tinyurl.com/ywsm2g
Evidence to the Health Select Committee on NICE,
Professor Malcolm Hooper
http://tinyurl.com/2zyjbf
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This information is available on THE ONE CLICK GROUP website
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From the Times:
November 21, 2007
http://www.timesonline.co.uk/tol/news/uk/article2910705.ece
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November 21, 2007
http://www.timesonline.co.uk/tol/news/uk/article2910635.ece
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November 21, 2007
http://www.timesonline.co.uk/tol/news/uk/article2910655.ece
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November 21, 2007
http://www.timesonline.co.uk/tol/comment/leading_article/article2910215.ece
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From The Telegraph
Only terminally ill safe under new DLA checks regime
19.11.07
The November edition of the Benefits and Work e-newsletter is available now.
You can sign up for the free newsletter which comes out on the second and fourth Tuesday of each month here and download copies of previous newsletters from the same page.
Some articles are open access – others available to members of Benefits and Work. It currently costs £16.50 for a year’s membership – and worth every penny!
“For a single payment of £16.50 claimants and carers receive a password and username which allows you to download, for your own use, all of our regularly updated guides, factsheets, news items and other resources as often as you need for a year, plus membership of the forums.
Visit the Guides Index page for a complete list of all our incapacity for work, disability living allowance, attendance allowance, work and benefits, disability discrimination and other guides and factsheets.”
NICE condemned over chronic fatigue syndrome
19 November 07
Psychologists have criticised NICE guidance on chronic fatigue syndrome for being insufficiently evidence-based and too prescriptive in its recommendations of therapy.
The controversy is the latest in a series to hit the guidance, which is set to be the subject of a judicial review and has been attacked for treating CFS purely as a psychological illness.
Read full item here
