Archive for September, 2008

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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Position on RSM Bristol conference: TYMES Trust, 25% M.E. Group

Posted in 25% ME Group, AfME/Action for ME, AYME, CBT/GET, ME Association, NICE CFS/ME guideline, Prof Peter White, Royal Society of Medicine, Sir Peter Spencer, The Young ME Sufferers Trust on September 18, 2008 by meagenda

ME patient organisations’ positions on the RSM’s regional conference on “CFS”

In the weeks before the RSM’s controversial London “CFS” conference, four of our leading ME patient organisations had issued position statements in response to a statement published by Action for ME (AfME) in defence of Sir Peter Spencer’s participation in this event.

Yesterday, I approached The ME Association, The Young ME Sufferers Trust, The 25% M.E. Group and Invest in ME to enquire whether these organisations have issued or intend to issue position statements on the RSM’s CFS regional conference taking place in Bristol today or have made any arrangements for literature to be handed out to conference attendees. A week ago, I also contacted the Bristol ME Support Group for their position on this conference and to enquire what action they might be taking.

Simon Lawrence, Chair The 25% M.E. Group

Simon Lawrence says that unfortunately he only recently became aware of this conference through the grapevine and that this was probably mainly due to his own ill-health. The 25% Group have therefore no arrangements in place to make a statement concerning this and have been unable to campaign because of the lateness.

 

Jane Colby, Executive Director The Young ME Sufferers Trust

Jane Colby says that The Young ME Sufferers Trust has been liaising with the RSM about redressing the problem of these conferences in the future; that the Trust has made its position clear that the speakers who are taking part will need to be balanced by different speakers in another medical conference. With regard to the Bristol Conference, Ms Colby says that she had got the impression that another demo* was being organised but that it now seems that this may not be the case after all. However, the Trust’s position is the same as it was for the London conference, because the Trust expects the same messages to be expressed by these speakers.

*Ed No announcement had been made that a demonstration of any kind had been organised for Bristol. A notice had been circulated by Gus Ryan on some internet forums and e-lists asking for anyone interested or who knew of anyone who would be interested in organising/attending a gathering outside the conference to contact him.

I will be commenting on these responses after I have heard back from The ME Association and Invest in ME.

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Bristol RSM Conference: Where’s the action?

Posted in 25% ME Group, AfME/Action for ME, AYME, CBT/GET, Invest in ME, ME Association, NICE CFS/ME guideline, Prof Peter White, Royal College of Psychiatrists, Royal Society of Medicine, The Young ME Sufferers Trust on September 18, 2008 by meagenda

Bristol RSM Conference: Where’s the action?

Before the controversial RSM’s London CFS Conference had taken place in April, it was already known that a regional one day conference on CFS had been scheduled by the Royal Society of Medicine Wessex Region for Bristol, for 18 September.

This conference takes place today and once again is intended for medical and allied health professionals, only.

I had been alerted to this event by Neil Riley, Chair of the ME Association Board of Trustees, on 13 April.

I flagged up this regional conference in a posting on Read ME UK Events site on the same day; the site received just under 3000 hits during the month of April, alone.

Since then, I have flagged up this Bristol conference several times on both Read ME UK Events and ME agenda site.

I have also put out a copy of the Agenda for tomorrow’s conference on the Co-Cure mailing list together with the Agenda for a conference on Chronic Fatigue Syndrome in Children and Young People by the Royal College of Psychiatrists South West Division Training being held in Devon, on 24 October.

Dr Esther Crawley, who was a member of the NICE Guideline Development Group, will be presenting at both the RSM’s Bristol conference and the Royal College of Psychiatrists conference. 
Click here for Agendas for these meetings.

In the run up to the RSM’s London CFS Conference, I had launched a Postcard Campaign to help raise awareness of the conference itself and to encourage the ME community to write in to the RSM and express their concerns. This was just one of a number of initiatives around this conference.

I’ve already mentioned, here, that unfortunately due to personal circumstances I have not been in a position to undertake a Postcard Campaign for the Bristol CFS Conference.

Given the interest in the RSM’s London conference in April, the ME community and the organisations which represent our interests have been notably subdued about the conference taking place tomorrow.

Although this is a regional conference it has implications for all of us in the UK, and internationally. There are many of us who consider that the influence of Professor Peter Denton White is equal to that of Professor Simon Wessely, and Professor White is giving the same presentation in Bristol that he gave in London, in April. There is also a presentation on behalf of NICE.

But as a regional conference, it has particular relevance to residents of the Bristol area for it is their medical professionals – their local GPs, medical trainees and allied health professionals – whose bums will be on the seats at UBHT Education Centre, tomorrow.

To the best of my knowledge no position statement has been issued by the Bristol ME Support Group whose members are amongst those for whom this conference has most relevance. On Saturday, I contacted the Bristol ME Support Group to ask what the Group’s position on this conference is, whether they had issued a position statement and whether the group were taking any action or had written to the media or to the RSM?

I’ve received no response so far on behalf of the group.

In March/April, AfME had issued a statement about Sir Peter Spencer’s participation in the London RSM Conference and this was followed by responses in the form of position statements from the ME Association, The 25% ME Group, The Young ME Sufferers Trust and Invest in ME. Full copies of all these positions statements were posted on both blogs and extracts were included in the “On a Postcard, please” Campaign Flyer. Paul Davis of RiME also provided a brief position statement specifically for inclusion in the Flyer.

Our patient organisations have also been notably muted on the issue of this Bristol conference.

Yesterday I contacted the ME Association, The Young ME Sufferers Trust, The 25% ME Group and Invest in ME to enquire whether any of these organisations have issued or intend to issue position statements on the Bristol conference or have made any arrangements for material to be handed out to conference attendees.

I will post any responses I receive as they come in.

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Eve of RSM Conference open letter: ME Free For All.org

Posted in AYME, CBT/GET, NICE CFS/ME guideline, Prof Peter White, Royal Society of Medicine on September 18, 2008 by meagenda

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   drjohngreensmith@mefreeforall.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

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Two UK regional CFS conferences in September and October

Posted in AfME/Action for ME, AYME, CBT/GET, NICE CFS/ME guideline, Prof Peter White, Prof Simon Wessely, Royal College of Psychiatrists, Royal Society of Medicine on September 15, 2008 by meagenda

Two UK regional “Chronic Fatigue Syndrome” conferences in September and October

There are two UK regional conferences on “Chronic Fatigue Syndrome” for medical professionals, students and allied health professionals only, being held by The Royal Society of Medicine (RSM), Wessex Region and The Royal College of Psychiatrists, South West Division Training (RCPsych SWDT) in September and October.  Continue reading

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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RSM Chronic Fatigue Syndrome Conference, Bristol 18 September

Posted in AYME, CBT/GET, NICE CFS/ME guideline, Prof Peter White, Royal Society of Medicine on September 9, 2008 by meagenda

RSM Chronic Fatigue Syndrome Conference, Bristol, Thursday, 18 September

The Royal Society of Medicine is holding a regional “CFS” conference, in Bristol, on 18 September.

The line-up of presenters includes Professor Peter Denton White, Mary-Jane Willows (CEO of AYME), Dr Esther Crawley (NICE GDG member and a medical adviser to AYME), Dr Hazel O’Dowd and Prof Tony Pinching (a medical adviser to AfME).

Professor Peter White was one of the speakers at the controversial RSM “CFS” conference which took place in London, in April, and his presentation in Bristol will also be titled “What is Chronic Fatigue Syndrome and what is ME?”

The ME Association published a summary of Professor White’s April presentation for the RSM which you can read here:

http://meagenda.wordpress.com/2008/05/15/mea-summary-of-prof-peter-d-whites-rsm-presentation/

View the webcast of Professor White’s RSM Conference presentation here:

http://rsm.mediaondemand.net/events.aspx

http://rsm.mediaondemand.net/player.aspx?EventID=1291

In March and April, this year, there were a number of initiatives around the RSM’s London “CFS” Conference.  Joanie Crawford and her husband handed out leaflets to conference attendees in the morning and Gus Ryan organised a demonstration outside the building in the afternoon during which specially prepared letters were presented. Gus Ryan also produced a YouTube video of the event which can be viewed here

RSM Protest video http://www.youtube.com/watch?v=OLFGPc_fZ7A

I co-ordinated a postcard campaign – information here on Read ME UK Events

John Greensmith, ME Free For All, also encouraged letters and emails to the RSM. The RSM were inundated with communications expressing concern about the psychiatric/psychological bias of the line-up of speakers.

It’s only nine days until this conference takes place, on Thursday, 18 September.

Due to personal circumstances, I am not able to undertake the co-ordination of a postcard campaign for this forthcoming Bristol conference, or circulate flyers or flag up protests against this conference on forums and mailing lists, but John Greensmith has put out some information today. So if you want to write or email your concerns, here is John’s notice.  Address for the RSM: Royal Society of Medicine, 1 Wimpole Street, London W1G 0AE  Email Dr John Scadding

From Dr John Greensmith, ME Free For All

PERMISSION TO FORWARD, REPOST & USE IN NEWSLETTERS

You may remember that the Royal Society of Medicine (RSM) Conference, “Chronic Fatigue Syndrome”, in London, on 28 April 2008 caused something of a furore (see

http://www.mefreeforall.org/2008-Apr-Jun.448.0.html#c2203 and following letters, when logged in)

and I expect a similar response this time since it is essentially a repeat performance.

This is my letter about the conference with the same name to be held in Bristol on 18 September 2008 here

http://www.mefreeforall.org/2008-Jul-Sep.1017.0.html#c3976

which you may read when logged in and also click to the agenda for the conference and any other correspondence, as it comes in.

May I suggest that as many as can manage send a letter to the Bristol Evening Post, epletters@bepp.co.uk, Western Daily Press, wdletters@bepp.co.uk and Bath Chronicle papers, near to where the conference is being held, as well as the North Devon Journal, letters@northdevonjournal.co.uk and the Western Morning News, wmnletters@westernmorningnews.co.uk, in which it got good coverage last time. You may also want to send it to your own local paper and the national daily, or Sunday, that you take for a more universal coverage.

Talking of universal, although this is a medical institution in the UK, may I urge M.E. sufferers from abroad to write as well, since this is a foreign import you could well do without.

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Is there anyone in the North-East of England/North Yorkshire who would be prepared to talk to The Northern Echo about the forthcoming RSM conference in Bristol on 18 September 2008.

Please get back to me and I’ll put you together.

(There is much more interest in this than I had even hoped – please write to the Bristol & Bath Papers, the North Devon Journal, The Westen Morning News and your own local, national daily and sunday papers – e-mail addresses in my previous e-mail or from me)

Dr John H Greensmith
drjohngreensmith@mefreeforall.org

ME Free For All. org
http://www.mefreeforall.org

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RSM Bristol Conference Agenda and booking information

18 September 2008

Wessex Region Chronic Fatigue Syndrome Bristol

Venue: UBHT Education Centre, Upper Mauldin Street Bristol BS2 8AE

Thursday 18 September 2008

Click here for Conference Agenda

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