Archive for the NICE CFS/ME guideline Category

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

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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.

~~~~~~~~~~~~~~~~~~~~~

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

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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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Squeeze the psychs out of M.E.: Prof Wessely RSM presentation

Posted in AfME/Action for ME, CBT/GET, NICE CFS/ME guideline, Prof Peter White, Prof Simon Wessely, Royal Society of Medicine, Sir Peter Spencer, UNUM on July 9, 2008 by meagenda

During his presentation at the Royal Society of Medicine’s “CFS” Conference on 28 April 2008, Professor Simon Wessely referred to “the demonstration Squeeze the psychs out of M.E.” using a PowerPoint slide of the “Squeeze the psychs out of M.E.” graphic to illustrate this section of his talk. I would like to point out that whilst I am happy for Professor Wessely to have included my graphic in his presentation, that the “Squeeze the psychs out of M.E.” graphic and slogan were prepared exclusively for use with the RSM “On a Postcard, please” campaign and that both were initiatives independent of the RSM Protest organised by Gus Ryan outside the RSM building on the afternoon of the conference.

This extract from the closing minutes of Professor Simon Wessley’s presentation to the Royal Society of Medicine “CFS” Conference is not an official transcript. Whilst considerable care has been taken to prepare a fair and verbatim transcript, some errors and omissions may remain.

 

Prof Simon Wessely’s RSM CFS Conference presentation (and PDF of PowerPoint slides)

Epidemiology: Professor Simon Wessely, King’s College London

Webcast available from RSM website (registration required) at: http://rsm.mediaondemand.net/events.aspx  

PowerPoint slides only available to download at:

Epidemiology [PDF 544k]
Professor Simon Wessely, King’s College London
http://www.rsm.ac.uk/chronicfatigue08/wessely.pdf  

Title: Epidemiology counts… [illustrated with 54 PowerPoint slides]

http://rsm.mediaondemand.net/player.aspx?EventID=1293

32.00 mins into Prof Wessely’s presentation [34.38 mins]

These are important, then, because what we’re saying is that any proposed model for CFS, if it’s going to reflect the world as it is, must explain these epidemiological findings, it must explain the genetics finding, it must explain the gender bias, it must explain these links with previous psychological disorders, it must explain why some, but not all agents can initiate CFS and it must explain these complicated links with activity.

Copyright Suzy Chapman

Copyright Suzy Chapman

PowerPoint slide 53: Image: “Squeeze the psychs out of M.E.” graphic from “On a Postcard, please” campaign

It’s not possible, really though, to completely avoid the outside world much as though we would like, and this kind of erm, demonstration “Squeeze the psychs out of M.E.” – and one can understand the emotions behind this – but I do find it hard to sympathise and I also think it’s a great mistake because if you really actually want to understand chronic fatigue syndrome, M.E. whatever we’re going to call it, you have to do so in possession of all the facts – not just those facts that you like, but all of them; you can’t pick and choose and the history of science tells us very clearly that turning your back on erm, things that you don’t like, things that aren’t going the way you want them to, and there are many, many examples of this, at best leads to false conclusions and bad decisions, and at worst leads to bigotry and intolerance.

It is not good enough to dismiss the research that we have described as “nonsense” or those who followed it as “knaves”, “charlatans” or “varlets” because they’re none of those things – if you want to help sufferers you have to see the world as it is, in all its complexity and not just parts of it.

[Image]

PowerPoint slide 54: Image: Front cover: Kings Centre for Military Health Research Ten Year Report
http://www.kcl.ac.uk/content/1/c4/79/73/SW%20Publications.doc

That’s ought to be my last slide but I don’t want to leave it like that as I don’t like it, so this actually is my last slide and this is just finally a kind of personal note – a strange thing has happened, I still see patients every week but I’ve really pulled out of research in this area and I have very little involvement, now, and I’ve done the exact opposite of Sir Peter Spence [sic] there at the back. He’s moved from the armed forces into the world of chronic fatigue syndrome at about the same time as I’ve done exactly the opposite – I haven’t joined the armed forces, by the way, so those interested in the security of the country can be, can be relaxed on that one [laughter] but I have now devote nearly all of my time towards research into this area and erm, if Sir Peter, if things are going as well for you as they are for me in this area then you’re a very happy man because I certainly am, as well. At that point, thank you very much.

[No question sesssion included in webcast]

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RSM CFS Conference Webcasts and Presentation PDFs

Posted in AfME/Action for ME, CBT/GET, NICE CFS/ME guideline, Prof Peter White, Prof Simon Wessely, Royal Society of Medicine, Sir Peter Spencer, UNUM on July 3, 2008 by meagenda

Royal Society of Medicine “Chronic Fatigue Syndrome” Conference 28 April 2008

Webcasts and PDFs of Presentation documents

Webcasts of all ten presentations have now been added to the RSM’s website. These also include PowerPoint slides which accompanied the presentations.

For ease of reference, all links to webcasts are collated in this one posting, together with links for the ten presentation document PDFs. Those on dial-up internet access please note that the PDF for Sir Peter Spencer’s presentation is around 6.0MB file size.

The webcasts are available in four session sections. Registration is required to view these webcasts but this does not take long to fill in and is processed immediately – you may need to log in each time you return to the site.

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

Introduction by RSM Dean Dr Scadding
http://rsm.mediaondemand.net/player.aspx?EventID=1294

What is Chronic Fatigue Syndrome & what is ME?: Professor Peter White, Barts & the London School of Medicine
http://rsm.mediaondemand.net/player.aspx?EventID=1291

Epidemiology: Professor Simon Wessely, King’s College London
http://rsm.mediaondemand.net/player.aspx?EventID=1293

Pathophysiology: Dr Anthony Cleare, Institue of Psychiatry, London
http://rsm.mediaondemand.net/player.aspx?EventID=1292

Assessment: general practitioners’ approach: Professor Chris Dowrick, University of Liverpool
http://rsm.mediaondemand.net/player.aspx?EventID=1334

Assessment: psychiatrist’s approach: Professor Matthew Hotopf, Institute of Psychiatry, London
http://rsm.mediaondemand.net/player.aspx?EventID=1333

M.E.- The Patient Perspective, Sir Peter Spencer
http://rsm.mediaondemand.net/player.aspx?EventID=1336

Management: NICE Guidelines, Professor Richard Baker
http://rsm.mediaondemand.net/player.aspx?EventID=1335

CBT and GET, Professor Rona Moss-Morris
http://rsm.mediaondemand.net/player.aspx?EventID=1338

What drugs can I use? Dr Alastair Miller
http://rsm.mediaondemand.net/player.aspx?EventID=1337

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

At the link below on the RSM site are links to extra online resources to accompany the conference: These are a single PDF of Speaker Abstracts and Biographies and ten PDFs of Presentation documents. No site registration is required in order to view or download the PDFs.

http://www.rsm.ac.uk/chronicfatigue08/index.php  

Chronic Fatigue Syndrome

Further resources to accompany the conference

Please note all presentations open in a new browser window

Speaker Abstracts and Biographies

Download Abstracts and Biographies [PDF 86k]
http://www.rsm.ac.uk/chronicfatigue08/abs.pdf

Speaker Presentation documents

Introduction, Dr. John Scadding. Dean of the RSM
Only Webcast available (Registation required)
http://rsm.mediaondemand.net/player.aspx?EventID=1294

What is Chronic Fatigue Syndrome & what is ME? [PDF 278k]
Professor Peter White, Barts & the London School ofMedicine
http://www.rsm.ac.uk/chronicfatigue08/white.pdf

Pathophysiology [PDF 311k]
Dr Anthony Cleare, Institue of Psychiatry, London
http://www.rsm.ac.uk/chronicfatigue08/cleare.pdf

Epidemiology [PDF 544k]
Professor Simon Wessely, King’s College London
http://www.rsm.ac.uk/chronicfatigue08/wessely.pdf

Assessment: general practitioners’ approach [PDF 576k]
Professor Chris Dowrick, University of Liverpool
http://www.rsm.ac.uk/chronicfatigue08/dowrick.pdf  

Assessment: psychiatrist’s approach [PDF 225k]
Professor Matthew Hotopf, Institute of Psychiatry, London
http://www.rsm.ac.uk/chronicfatigue08/hotopf.pdf

M.E. – The patient perspective [PDF 6.1mb]
Sir Peter Spencer, Action for M.E.
http://www.rsm.ac.uk/chronicfatigue08/spencer.pdf

Management: NICE Guidelines [PDF 301k]
Professor Richard Baker, Leicester University
http://www.rsm.ac.uk/chronicfatigue08/baker.pdf

CBT and GET [PDF 269k]
Professor Rona Moss-Morris, University of Southampton
http://www.rsm.ac.uk/chronicfatigue08/moss_morris.pdf

What drugs can I use? [PDF 243k]
Dr Alastair Miller, Royal Liverpool University Hospital
http://www.rsm.ac.uk/chronicfatigue08/moss_miller.pdf

“Please note that copyright in the presentations on the RSM’s site belong to the authors listed. Permission must be sought for any copying or other re-use of their material.”

“The Royal Society of Medicine is not responsible for the content of the presentations of the listed authors.”

Apologies for the error in one of the links that were mailed out via Co-Cure e-list, yesterday, this has now been corrected in a follow up posting.

I’d like to take this opportunity of thanking the following: Gus Ryan for organising the RSM Protest on the afternoon of the conference, his two stewards, Annette Barclay and Ciaran Farrell, all those who attended the protest and prepared presentation letters; Joan and Dewi Crawford for attending in the morning and handing out several hundred information leaflets to conference attendees; everyone both here in the UK and internationally, who sent postcards, letters and emails to the RSM in protest against the make-up of the planning committee, the line-up of presenters and the conference agenda – according to the RSM’s Mrs Jo Parkinson, they were “inundated”; all those who raised awareness of the various protests on websites, forums, e-lists and social networking sites and all those who agitated before and following the conference for transcripts and videos of the presentations to be made available on the RSM’s website.

Suzy Chapman,
“On a Postcard, please” Campaign Co-ordinator

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RSM Conference webcast: Prof M Hotopf

Posted in AfME/Action for ME, CBT/GET, NICE CFS/ME guideline, Prof Peter White, Prof Simon Wessely, Royal Society of Medicine, Sir Peter Spencer on June 30, 2008 by meagenda

The fourth and fifth RSM Conference webcast

 

Pathophysiology: Dr Anthony Cleare, Institue of Psychiatry, London

http://rsm.mediaondemand.net/player.aspx?EventID=1292  

Assessment: psychiatrist’s approach: Professor Matthew Hotopf, Institute of Psychiatry, London

http://rsm.mediaondemand.net/player.aspx?EventID=1333

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