Archive for the ME in the media Category

Countdown: Judicial Review NICE CFS/ME Guideline

Posted in CBT/GET, Judicial Review, ME in the media, NICE CFS/ME guideline, Prof Peter White, Prof Simon Wessely on January 23, 2009 by meagenda

Royal Courts of Justice

Image | bortescristian Creative Commons

High Court Hearing Countdown

Judicial Review of NICE Guideline for CFS/ME

East Block location maps | http://www.nicemecourt.co.uk

When? | 11th and 12th February 2009

Why? | http://www.meactionuk.org.uk/nicejr.htm

What else do I need to know? | http://www.nicemecourt.co.uk  

Whom do I contact? | contact@nicemecourt.co.uk

 

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NICE CFS/ME Judicial Review: new YouTube

Posted in CBT/GET, Judicial Review, ME in the media, ME videos, NICE CFS/ME guideline, Prof Peter White, Prof Simon Wessely on January 6, 2009 by meagenda

The NICE M.E. Guidelines Judicial Review new YouTube video

http://www.youtube.com/watch?v=uojoJ07OktE

“Annette Barclay talks about the impending legal challenge to the NICE guidelines on M.E.”

8.17 mins

by GBCOne

Added 4 January 2008

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For information about the Judicial Review and copies of NICE JR related documents by Margaret Williams go to:

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

For a document setting out what a Judicial Review is, what it is not, and how it works see:

http://meagenda.wordpress.com/2008/06/18/judicial-review-judgement-guidance

Supporters’ website:

An unoffical site has been set up for supporters of the NICE CFS/ME Judicial Review, for information and updates for those planning to attend the hearing and for those able to offer assistance with arrangements and publicity. The site can be found at:

http://www.nicemecourt.co.uk/

Please note that ME agenda site and Suzy Chapman have no connection with either of the two legal cases involved in the Judicial Review or with the supporters’ website.  All enquiries about this Judicial Review, including media enquiries, should be directed to the legal firms concerned or to the High Court, as appropriate.  Members of the ME community and their advocates planning to attend the Court hearing or who are able to offer assistance should direct enquiries about arrangements for what is currently scheduled for at least a two day hearing, to the web master of the NICE CFS/ME Judicial Review Supporters’ website.

Previous postings around the NICE Judicial Review are archived under Judicial Review in the Categories list in the left hand sidebar of ME agenda site.

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Documents, NICE CFS/ME Judicial Review: M Williams

Posted in 25% ME Group, CBT/GET, Judicial Review, ME Association, ME in the media, NICE CFS/ME guideline, Prof Peter White, Prof Simon Wessely, UNUM on October 31, 2008 by meagenda

Margaret Williams has issued a series of documents created specifically for the NICE Judicial Review. These are being circulated by Stephen Ralph and are also available from the MEActionUK website.

Stephen Ralph has created a page for all Judicial Review documents and this can be found on a button at the top of the main page of www.meactionuk.org.uk

Alternatively you can find the page directly by clicking on this link:

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

Please note that there is some duplication of documents already published.

Document 1: http://www.meactionuk.org.uk/Background_Information_re_CBT.htm  

Background information and illustrations of evidence that CBT cannot improve ME/CFS which NICE disregarded

Margaret Williams 25 July 2008

Document 2: http://www.meactionuk.org.uk/Facts_re_GET.htm

Evidence that the Guideline Development Group that produced the NICE Guideline on CFS/ME (C53) failed to fulfil its remit

(particularly in relation to the potential dangers of graded exercise therapy)

Margaret Williams 7 July 2008

Document 3: http://www.meactionuk.org.uk/Cardiovascular.htm  

Evidence of cardiovascular problems in ME/CFS that NICE disregarded

Margaret Williams 4 August 2008

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NICE CFS/ME Judicial Review: Launch of supporters’ website

Posted in AfME/Action for ME, CBT/GET, Judicial Review, ME Association, ME in the media, NICE CFS/ME guideline on September 23, 2008 by meagenda

NICE CFS/ME Guideline legal challenge supporters’ website for information, updates and appeals for assistance with Judicial Review

A member of the ME internet community has created a website to support the NICE Guidelines court case(s). This is an unofficial site and not connected to the organisers but for supporters who want to make the hearing a success.

The site can be found at:

http://www.nicemecourt.co.uk/  

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For guidance on what a Judicial Review is, what it isn’t, and how it works see:

http://meagenda.wordpress.com/2008/06/18/judicial-review-judgement-guidance/

Judicial Review: Judgement Guidance

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For a summary of the application hearing which took place in June and a copy of the ME Association’s position regarding the NICE legal challenge see:

http://meagenda.wordpress.com/2008/06/18/summary-of-application-hearing-nice-cfsme-judicial-review/

Financing a judicial review of the NICE guideline on ME/CFS

Published by the MEA in November 2007

Summary of application hearing, NICE CFS/ME judicial review

The case against the NICE guideline on ME/CFS moved to Court 7 in the Royal Courts of Justice on Tuesday 17 June. Summary of key points made during the proceedings.

Produced by the ME Association

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In November AfME (Action for ME) issued a statement on their position regarding the NICE legal challenge see:

http://www.afme.org.uk/news.asp?newsid=343

Legal action against NICE

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…

Read full statement from AfME here

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Bristol Evening Post, 9 September 2008, Dr John Greensmith

Posted in AfME/Action for ME, AYME, CBT/GET, ME in the media, NICE CFS/ME guideline, Prof Peter White, Royal Society of Medicine on September 11, 2008 by meagenda

ME Free For All. org

Bristol Evening Post, 9 September 2008, Dr John Greensmith

The forthcoming Royal Society of Medicine (RSM) Conference, “Chronic Fatigue Syndrome” in Bristol on 18 September 2008, is an unwelcome example of how a small but very influential minority of the medical profession is stubbornly refusing to listen to the very group of patients it claims to serve.

Even before an identically named conference was staged in London on 28 April 2008, this one had already been timetabled with the same leanings, some of the same participants and lectures. Both would always go ahead despite an unprecedented amount of communication – perhaps five or six times the usual for other M.E. issues, with some very ill people moved to write for the very first time – to the RSM, the press and one eminent M.E. specialist even wrote to The Queen.

The serious concerns now, as they were in April and as they will be in the future, if the RSM persist in ignoring M.E. sufferers, are that there is a bias towards a psychiatric view of the illness, promotion of treatments intended for illnesses of a psychiatric origin, in line with the NICE guidelines, a preference for the name Chronic Fatigue Syndrome and a lack of consideration and funding for more promising biomedical research.

The majority received no reply at all. Those who did will have been frustrated or angered, rather than comforted or appeased at the abrupt, defensive, arrogant tone delivering, sometimes, factually incorrect content about the conference’s organisation and content. Those who were told that there are some events to which M.E. patients are invited will wonder why they are excluded from any.

It did go ahead, the effect of a small peaceful protest of a dozen or so quite severely affected people, some in wheelchairs, thwarted by the simple device of closing the gates at one entrance to the building.

M.E. sufferers will wonder why one of the speakers, this time, is billed as “Person with CFS/ME”, when her principal role is as Chief Executive of the sister group of the only other M.E. organisation to have been invited to speak because they are more sympathetic to the NICE proposals than every other M.E. group which, without exception, have published responses of varying degrees of opposition.

They will also hope that there is not a repeat performance of the difficulty of and delay in, transcripts and videos of the proceedings becoming available.

I anticipate an even greater clamour of protest, this time than last, perhaps with new voices raised but, I predict, that these few will still decide the fate of M.E. sufferers without the proper scientific mandate for doing so.

Yours sincerely

Dr John H Greensmith
ME Free For All. org

drjohngreensmith@mefreeforall.org  
http://www.mefreeforall.org/

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MP3 download: ME strand on BBC Radio Norfolk, 19 June

Posted in CBT/GET, Dr Ian Gibson, Judicial Review, ME in the media on June 25, 2008 by meagenda

The ME Association News page has flagged up an MP3 download of the first segment of the strand on ME broadcast on BBC Radio Norfolk on the “Breakfast with Bumfry” show, Thursday, 19 June.

The MP3 can be downloaded from the You Send It site, here:

norfolk.mp3 (7344 KB)

https://www.yousendit.com/transfer.php?action=download&ufid=75E3CC9025578384

For a transcript of this segment see previous posting.

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