Archive for June, 2008

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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RSM webcast: Dr Anthony Cleare

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

Webcast of presentation by Dr Anthony Cleare has now been added to the RSM website.

Registration is required to view RSM webcasts

Presentation by Dr Anthony Cleare at:

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

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RSM “CFS” Conference webcasts and abstracts

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

RSM “CFS” Conference webcasts are now available on the RSM website

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

Three webcasts are currently available to view at the link above. These are:

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

Presentation by Professor Peter Denton White
http://rsm.mediaondemand.net/player.aspx?EventID=1291

Presentation by Professor Simon Wessely
http://rsm.mediaondemand.net/player.aspx?EventID=1293

Registration is required to view these webcasts but this does not take long to fill in and is processed immediately.

I will post the links for further webcasts as these become available on the RSM’s site. I was told on Friday, by the RSM that it was anticipated that webcasts of all presentations would be available by the end of this week.

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At the link below on the RSM site are links to extra online resources to accompany the conference: Chronic Fatigue Syndrome which took place on Monday 28 April 2008. These are PDFs of Speaker Abstracts and Biographies:

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 Presentations

Introduction, Dr. John Scadding. Dean of the RSM
View Webcast (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
View Webcast http://rsm.mediaondemand.net/player.aspx?EventID=1291

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

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_morris.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.

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Statement regarding the promotion of events associated with Ms Diane Newman

Posted in 12 May ME events on June 29, 2008 by meagenda

Statement regarding the promotion of events associated with Ms Diane Newman

Ms Diane Newman runs the Peterborough M.E. & CFS Self Help Group and is a former trustee of the ME Association.

In May 2007, Ms Newman undertook to organise two ME Awareness Week “Peoples Day Events”. She also took on the role of Event Organiser for two events to mark ME Awareness Week 2008 – the first on 12th May and a public “M.E./CFS Open Forum” meeting held in a House of Commons committee room on 15th May.

For both events, I had undertaken to publish notices and promotional material on my sites at http://meagenda.wordpress.com  and https://readmeukevents.wordpress.com .

In the light of recent issues, I am no longer prepared to carry notices, reports and promotional material for any events organised by Ms Newman. This means that I am not prepared to publish Ms Newman’s 27th June report of the events on 12th May and 15th May or the minutes of the “Open Forum” meeting held on the 15th, if and when minutes are produced by Ms Newman for circulation.

Nor will I be prepared to carry notices or other material for the May 2009 “Peoples Day Events” which Ms Newman is also undertaking to organise. Nor will I be prepared to carry notices or other material associated with any other event which Ms Newman might be planning to organise in the interim.

This decision has been made for the following reasons:

Mr Trevor Wainwright, a Founder Member and former Administrator of MERSC, is listed by Ms Newman as being “Event Patron” to these “Peoples Day Events” organised in May 2007 and May 2008.

In July 2003, Mr Wainwright had published a series of postings on the Yahoo list “MEActionUK” in which he set out his vision for a new campaigning organisation in the wake of the first 12th May event, which had taken place a couple of months earlier.

At the time, Mr Wainwright had been challenged by another member of the Yahoo group to expand on some of the comments he had expressed via this series of postings and one of the questions he was asked was whether this proposed society would cater for various fatigue conditions as well as Myalgic Encephalomyelitis and if not, how did he intend to separate the different patient groups?

Mr Wainwright’s response, in 2003, had been:

“Myalgic Encephalomyelitis should be the main illness, but I see no reason why other conditions which include severe fatigue should not be included. This I have often said during my pub collections when there has been confusion with varying fatigueable illnesses. Find the cure for one and you’re on the way to finding the cure for the rest.”

Earlier this month, during discussions centring around the concepts of “leaders” and “leadership” and whether the ME community would benefit from “leaders” and “leadership” or whether what was required was the formation of a new democratically run campaigning organisation, I asked Mr Wainwright if he would clarify his current position on the views he had held in 2003, as set out above.

Mr Wainwright has confirmed that he still holds those views and that he stands by them.

It is this issue that I have set before Ms Newman, as Organiser of this year’s 12th and 15th May events.

Given that Mr Wainwright was listed as “Event Patron” to this year’s 12th May events (either as a self elected patron or having had this role bestowed upon him by Ms Newman) and given that he has confirmed that he holds views that I consider anathema to me, as a carer and member of the ME community, I have asked Ms Newman, as Event Organiser, for her position on the following:

Do you consider that ME organisations should include and cater for “other conditions which include severe fatigue” as well as Myalgic Encephalomyelitis?

Not only is Ms Newman seemingly unwilling to provide a clarification of her own position on this issue, in her capacity as Organiser of the “Peoples Day Events”, but the setting of this issue before her has provoked a hostile and vituperative ad hominem attack, in response to a polite request.

Mr Wainwright is entitled to hold the views and opinions that he holds but I do not support the view that ME organisations should include and cater for “other conditions which include severe fatigue” as well as Myalgic Encephalomyelitis.

It is a fundamentally antagonistic principle that has no place on platforms for political issues affecting the lives of sufferers of Myalgic encephalomyelitis [WHO ICD-10:G93.3] and those who care for them.

I cannot undertake to publicise any past or future events where an “Event Patron” has been appointed who holds such views.

Nor am I prepared to undertake to publicise any past or future events or ventures where the Event Organiser is not prepared to be open and transparent about the views and opinions she holds on such matters.

I shall not, therefore, be publishing copies of Ms Newman’s report of the 12th May event and the 15th May “Open Forum”, nor a copy of the minutes for the “Open Forum” meeting, if and when Ms Newman produces minutes.

Nor shall I be publishing or circulating any material in connection with any future venture(s) with which Ms Newman may be associated and I disassociate myself, entirely, from Ms Newman and from any events, organisations and ventures with which she is currently associated or with which she may be involved or seek to involve herself in the future.

Suzy Chapman

http://meagenda.wordpress.com  
https://readmeukevents.wordpress.com   

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RSM CFS Conference webcasts: update

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 June 27, 2008 by meagenda

RSM CFS Conference update on release of webcast

This morning (27 June) I telephoned the office of Mr Ian Balmer, Chief Executive of the Royal Society of Medicine for an update on the release of a webcast of the presentations made at the RSM’s CFS conference on 28 April.

I spoke to Mr Balmer’s personal assistant, Ms Joanna Rose, who telephoned me later with the following information:

That Power Point slides used during the presentations are expected to be available from the RSM website from next Monday (30th June).

That a webcast of the presentations is expected to be completed and available from the website by the end of next week (4th July).

I asked Ms Rose whether all the presentations would be available on the website since there had been some concerns that permission might not yet have been obtained from all presenters: Ms Rose advised me that it was her understanding that all presentations will be included.

The page on the RSM website for RSM webcasts is:

http://www.rsm.ac.uk/academ/video.php

I will update as soon as I can confirm that the Powerpoint Presentations have been published.

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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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Transcript: BBC Radio Norfolk, Ian Gibson on NICE JR

Posted in CBT/GET, Judicial Review, NICE CFS/ME guideline on June 23, 2008 by meagenda

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This transcript has been prepared by Suzy Chapman and is not an official BBC transcript. Although care has been taken to produce a fair and verbatim record, some errors and omissions may remain. This transcript may be reproduced in full or in part as long as the author and the source is credited and on condition that it is published together with this disclaimer.

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BBC Radio Norfolk

“Breakfast with Stephen Bumfry”
http://www.bbc.co.uk/norfolk/local_radio/  

7am to 10am, Thursday 19 June 2008
[The first segment in this ME strand started at approximately 7.20am and continued to 7.29am.]

Stephen Bumfry: People with ME in Norfolk have been handed a life-line. Victims of the chronic fatigue syndrome have won a significant legal victory after a top judge declared it “in the public interest” for the High Court to rule on claims that treatments being offered on the NHS are potentially fatal.

Two people, including Kevin Short from Norwich, have fought for this move. Speaking to BBC Radio Norfolk, Mr Short’s lawyer, Jamie Beagent said “It is a huge step.”

Jamie Beagent: It’s great news for our clients and for the wider ME community – we are actually overwhelmed with messages of support and thanks that we’ve received since the hearing, so it is very good news. Nice actually fought, defended the claim vigorously and they’ll obviously be disappointed by the result because now we will have a proper review carried out by the High Court into the procedures that went into the production of the Guideline and that, as I say, with the potential that the Guideline will actually be quashed, when it finally does come to Court.

Stephen Bumfry: And Mr Beagent says while it’s some good news, there’s still some way to go until a full High Court hearing in the Autumn.

Jamie Beagent: Well, the Court will be looking at the process that brought about the publication of the Guideline in August, last year. The crux of our argument is that the evidence which NICE based their conclusions upon was skewed very heavily in favour of the psychiatric school and in particular, the randomised controlled tests which were relied upon, we consider were entirely inadequate – they were very small in number – I think only seven tests, trials carried out in relation to CBT and five in relation to Graded Exercise Therapy.

Stephen Bumfry: Now if you or someone in your family is affected by ME and you’d like to get in touch with me, here on “Breakfast with Bumfry”, pick up the phone now – 01603 617 321 or text 07786 200 951. Lynne, I know someone in your family’s been affected – we’ll hear what they’ll have to say very, very soon…”

Lynne McKinley (programme producer): Absolutely…

Stephen Bumfry: Dr Ian Gibson is Kevin Short’s local MP and he joins us on the line now. Dr Gibson, Good morning.

Ian Gibson: Good morning.

Stephen Bumfry: How did you first become involved with the campaign?

Ian Gibson: Well, I mean, Kevin and I first had a discussion about the whole business of ME, and he persuaded me that it was something worth taking up and the way I approached it was to call for an inquiry in the House of Commons, which I set up with members in both Houses and we produced a Gibson Inquiry report which, your know, went a long way, I think, to helping people see that there were some real problems in this issue – you speak at meetings about the Report and so on…

It’s a very combative field – there’s a lot of argument, a lot of dispute about what’s known and what’s not known, but certainly I think, we helped raise the profile of ME as a serious illness, which seriously afflicts people and has to be taken, you know, right up into the echelons of a new illness which hasn’t been addressed properly by the medical profession…

Stephen Bumfry: Well, just describe to me what ME means and what the symptoms are…

Ian Gibson: Well, I have met constituents who have very depressed days when they can’t move, when they can’t get out of the house, and so on… For some people it’s very, very serious, that goes on for quite a long time – it might go on for their whole lives. Other people recover and can go out of doors, can maybe even stagger to work but it’s certainly not something that is manageable without proper treatment.

Stephen Bumfry: Now, I know that this condition has been dubbed “Yuppie Flu” – which is very unfortunate…

Ian Gibson: Yes. That was the meaning, I think. I think that was the attempt to say “Oh, dear, they’re just making it all up – it’s artificial.” Completely, completely untrue. There’s I think 250,000 people in this country who have symptoms of ME, different gradations of it, as I pointed out.

Quite often GPs miss it, don’t recognise it, don’t see it, just think it’s a temporary thing – just go home, have a couple of days in bed and you’ll be alright, again. Now that’s not their fault – it’s just that it’s never been taken seriously by the medical profession – whereas it has been in other parts of the world – the World Health Organisation has recognised that it is a neurological disease, that there may be factors like viruses, and other agents present – that it’s more biomedical than psychiatric and that has not been the prevailing thinking of the people in the medical professional.

So now…now this decision really helps us move that on and to say look NICE have made a decision based very, very much on the psychiatric analysis and there is plenty of evidence…massive amount of evidence now to suggest that it’s more complicated than that…

Stephen Bumfry: So your campaign has a got a bit of momentum, now, then?

Ian Gibson: Oh, yes. It’s got a momentum…we will support…there are many different groups in this field who argue about the different causes of it in terms of which agents might be involved…the problems with children and particularly with adults. It’s very combative, everybody has little arguments about it…what it really does need is a huge investment into research to find out what the cause is and we have been pleading for that for some time.

We have got the scientists and medics who are interested in this field together…they’re be putting together an application in conjunction with people in Canada and other countries who are interested in this, who’ve done some research but certainly need a huge injection of resource to get this settled once and for all.

NICE’s decision is what’s being challenged. Without all that evidence, it’s pretty poor, I think, to come out with the decision that they have and I’m very grateful that Kevin and a friend of his have challenged the ruling by NICE. In fact, I’m seeing, in an hour’s time, the Chairman of NICE, Sir Michael Rawlings, who’s a friend of mine, and we’ve had lots of arguments about drug availability for cancers and other things where NICE has been involved to make the assessment of the evidence and I shall talk to him about ME and say “Come on, don’t you really think we need to have a proper study carried out on this now, before you make decisions…”

Stephen Bumfry: We’ve got Lynne McKinley producing the show in the studio, Dr Gibson, and a member of Lynne’s family is affected by ME – Lynne…

Lynne McKinley: Absolutely. I know my nephew Rob has had ME for sixteen years. Actually, I did actually send him a copy of the High Court ruling ‘cos I thought he might be interested in seeing this and he said – well, this is what he emailed back to me:

“The bottom line is that until more biomedical research is carried out to understand the condition the arguments will continue to rage.”

He said, “It’s depressing to acknowledge just how little progress has been made in the sixteen years since I’ve been unwell. Two weeks ago, I went up to South London to give blood for Dr Jonathon Kerr’s research project…”

Ian Gibson: Excellent work, excellent biomedical work…

Lynne McKinley: “…abnormal gene expression in ME patients. I’m sure it’s through scientists like him that the real breakthroughs will be made.”

And so obviously, my nephew is very much a fan of Dr Kerr. But I can almost feel his frustration – sixteen years with ME…

Ian Gibson: Oh, absolutely…I can replicate that story many times over – it’s an absolute disgrace and appalling that it has been unacknowledged as a serious, serious condition which the medical profession really should have taken up. It’s up to government now to take a serious look at the whole situation and inject some money into it. The fight back starts here, again, for the hundredth time…we keep pushing at it and just now and again, this just shows you, if you give up, you know you’ll get nothing, you’ve gotta keep pushing and suddenly there’s a break somewhere.

Stephen Bumfry: Lynne, just briefly, then…

Lynne McKinley: The other thing that Rob just mentions in his email, he says some of the charities like ME Research UK and CFS Research Foundation, they’re raising money for biomedical research, just, you know, worth a mention, and I guess, you know, anybody that has a member of the family that has ME will understand the importance of supporting…

Ian Gibson: Fair comments…fair comments..

Stephen Bumfry: Dr Ian Gibson, MP for Norwich North, thank you very much for joining us this morning…

Ian Gibson: Thank you very much.

Stephen Bumfry: And if its affected you or someone in your family in any way, shape or form – 01603 617 321 or you can text me and that’s 07786 200 951, give us a shout here on “Breakfast with Bumfry”.

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