APPG meeting on Wednesday, 2 July: Change of room

Ed: Agenda for this meeting here:

http://meagenda.wordpress.com/2008/06/24/appg-on-me-agenda-for-meeting-and-agm-2-july-2008/

 

Would people travelling to the APPG on ME meeting in Westminster this Wednesday please note that the venue has been changed?

The meeting will now be held in Committee Room 20, House of Commons, instead of Committee Room 19. The time stays the same: 1-3pm.

Tony Britton
Publicity Manager, The ME Association
Home-based: 60 Broadgate, Weston, Spalding, PE12 6HY
Tel: 01406 370293 Mob: 07880 502927 Email: tbritton02@yahoo.com
ME Association website: http://www.meassociation.org.uk/

RSM webcasts, Dr A Cleare and Prof M Hotopf

A fourth and fifth RSM Conference webcast (registration required to view)

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

RSM CFS Conference: First three webcasts plus abstracts

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

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

Four 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

Presentation by Dr Anthony Cleare http://rsm.mediaondemand.net/player.aspx?EventID=1292

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]  http://www.rsm.ac.uk/chronicfatigue08/cleare.pdf
Dr Anthony Cleare, Institue of Psychiatry, London
View Webcast http://rsm.mediaondemand.net/player.aspx?EventID=1292

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

 

Summary ME Association Board of Trustees meeting, 24 June 2008

MAY BE REPOSTED

This is a summary of key issues that were discussed at a meeting of The ME Association Board of Trustees. The full day meeting was held in Buckingham on Tuesday 24 June 2008. Informal discussions on some of these issues also took place on the evening before.

PRESENT

Trustees

Ewan Dale
Mark Douglas
Neil Riley (Chairman)
Charles Shepherd
Barbara Stafford

Staff

Gill Briody (Company Secretary)
Tony Britton (Publicity Manager)

Apologies

Rick Osman (Vice Chairman)

PREMISES

Having had to vacate our previous premises at fairly short notice in April, due to the expiry of a temporary lease, this was the first meeting to be held in our new premises just outside the town. Gill Briody reported that the move had gone smoothly and that everything was now running to plan – with the exception of a few minor teething problems.

Statement regarding the promotion of events associated with Ms Diane Newman

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 had undertaken to organise two ME Awareness Week “Peoples Day Events”. She also took on the role of Event Organiser for two events to mark 2008 ME Awareness Week - 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 http://readmeukevents.wordpress.com.

In the light of recent issues, I am no longer prepared to carry notices and promotional material for any events organised by Ms Newman. Nor will I be prepared to carry notices or other material for any May 2009 “Peoples Day Events” which Ms Newman might also undertake 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 as “Event Patron” to these “Peoples Day Events” organised by Ms Newman 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 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 very contentious, 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 has Ms Newman been 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 for a position statement.

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

I cannot undertake to publicise any future events where an “Event Patron” has been appointed who holds such views.  Nor am I prepared to undertake to publicise any future events where the Event Organiser has not been prepared to be open and transparent about the views and opinions she holds on such matters 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
http://readmeukevents.wordpress.com

RSM CFS Conference: an ETA for webcast

May be reposted

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.

RiME: Update on issues with Minutes of APPG meeting 12 July 2007

PERMISSION TO REPOST

RiME   Campaigning for Research into Myalgic Encephalomyelitis

Update on issues with Minutes of APPG Meeting 12/7/07: Latest…

RiME wrote a detailed letter to the APPG Chair Des Turner 8/11/07 re. the mintues of the 12/7/07 meeting ( www.erythos.com/RiME  APPG Meetings, July ’07 Meeting), with copies to Heather Walker (AfME) and Tony Britton (MEA), complaining that what I said 12/7/07 was not reported or reflected accurately.

12/7/07 I read out statements from five Group leaders in England, condemning the clinics in their areas (this was corroborated by three attendees); two of the comments (Kent + Birmingham) were omitted altogether, and the rest of what I said was not reported accurately. There was also the matter of the Chair’s remark, ‘The Chair noted that the views of Mr Davis… did not seem to reflect those of the majority’. Four attendees (three of whom were taking notes) do not recall this.

Des Turner replied to the above letter on 16/11/07:

“… I am sorry you did not feel that the minutes gave a full and accurate report of the points you made. The minutes are not intended to provide a verbatim record…”

Tony Britton [Ed: MEA secretariat to the APPG on ME] replied on 14/11/07:

“Thanks for showing me this. I’ve just reviewed my notes. The minutes look fine to me – adequately reflecting what went on at the meeting.”

Heather Walker did not reply to RiME, but wrote to one of our supporters in Kent on 7/1/08:

“… As the person who drafted these minutes can I say that I stand by what I wrote 100% – and that I work very hard to try to ensure balanced reporting…”

At the beginning of the 22/1/08 Meeting, I challenged the minutes. It was agreed to amend the reporting of what I said; according to the official minutes of that meeting, ‘Heather Walker apologised for omitting mention of two of the five leaders… ‘ (I don’t recall hearing this, nor did Joy Birdsey and another person who were taking notes); but the Chair’s comment stayed in.

In a letter dated 5/6/08 Sir Peter Spencer [CEO AfME] wrote to one of our supporters in Scotland:

“… At the next meeting of the APPG, which was held in January, we apologised for omitting mention of two of the five group leaders to whom RiME referred in their statement. The omission was not deliberate…”

So, are we satisfied now? No, not entirely. We don’t feel that the Secretariat for the 12/7/07 meeting (AfME) responded appropriately to people’s concerns prior to the last meeting 22/1/08: RiME’s letter wasn’t answered; and in the above reply to Kent Ms Walker says she stood by what she wrote 100%.

Have the minutes been amended at the Charities’ end?

MEA Website: the 12/7/07 minutes, which I ran off 17/6/08 (can’t seem to find them on their website this week), appear to be the same as they were when published by AfME 2007.

AfME Website: having checked this week there seems to be nothing about the 12/7/07 or 22/1/08 Meetings; the APPG Minutes page seems to cut off at the May ’07 Meeting.

[Ed: This appeared to be due to a temporary technical glitch.  I had the same problem but the page in question did load in full after a protracted delay.]

Accordingly, RiME has written to Ms Walker (AfME) 26/6/08:

“… RiME wrote to Des Turner MP, you and Tony Britton (MEA) 8/11/07 about inaccuracies in the official minutes of the 12/7/07 APPG Meeting. The other two replied, you didn’t. ME parties, especially ones in Kent and Birmingham, feel you should have replied and made more of an effort to sort the situation out.

“You wrote to a person in Kent 7/1/08:

…. As the person who drafted these minutes can I say that I stand by what I wrote 100% – and that I work very hard to try to ensure balanced reporting….

But Sir Peter Spencer wrote 5/6/08:

… At the next meeting of the APPG, which was held in January, we apologised for omitting mention of two of the five group leaders to whom RiME referred in their statement. The omission was not deliberate…

Do you still stand by your 7/1/08 statement to the Kent ME patient?

This letter will be put in the public domain…

RiME has also written to Sir Peter Spencer AfME 26/6/08:

… Your comments please re. the enclosed letter (letter to Heather Walker 26/6/08 – ed.).

Since there seems to be nothing on your website re. the minutes of the 12/7/07 APPG Meeting (and the last one), it is not possible to see if the necessary amendments have been made. Are you aware of this?

This letter will be put in the public domain…

_______________________________________________

NB A number of letters were sent in. Here is one by the leader of Kent ME Network 8/1/08:

Dear Dr Turner,

… At the last APPG meeting, Paul Davis of RiME read out the following statement on behalf of the Kent ME Network:

‘Sarah Gould wrote to you on June 15 2007 saying ”I attended the CBT clinic in Maidstone …it offers nothing to those with neurological conditions like ME … members feel that the money would be better spent on biomedical research…”

Could you tell me why this statement was not included in the official minutes? This is what he reportedly said:

‘Paul Davis read out a letter from the Norfolk Group which listed dissatisfaction with CBT-led specialist services amongst local support groups in Norfolk, Manchester, Winchester and Eastleigh, adding that money would be better spent on biomedical research’.

There was no mention of the much maligned Kent Clinics, and members of our Group are extremely upset that their views were not recorded in the official minutes. Some wanted to attend the meeting, but were unable to do so due to the nature of the illness.

I request that the minutes be amended accordingly.

I have yet to receive a reply to my letter of June 15 2007 regarding the clinics, and I look forward to hearing from you on each of these issues…

cc Heather Walker AfME, Tony Britton MEA

______________________________________________

Paul Davis

rimexx@tiscali.co.uk  

www.erythos.com/RiME

MP3 of broadcast, BBC Radio Norfolk, 19 June

The ME Association News page has flagged up an MP3 download of the first segment of the strand on ME which was broadcast on BBC Radio Norfolk “Breakfast with Bumfry” show, on 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 jump to:

http://meagenda.wordpress.com/2008/06/20/transcript-bbc-radio-norfolk-thursday-19-june-2008/

APPG on ME: Agenda for meeting and AGM, 2 July 2008

May be reposted

Before I post the Agenda for the next meeting of the APPG on ME I’d like to correct a misconception posted on one of the forums of the Benefits and Work site.

It has been posted that AfME (Action for ME), the MEA (The ME Association), AYME (Association of Young People with ME), TYMES Trust (The Young ME Sufferers Trust), The 25% ME Group, ME Research UK, BRAME (Blue Ribbon for Awareness of ME) and RiME (Campaigning for Research into ME) are all members of the All-Party Parliamentary Group on ME.

The All-Party Parliamentary Group on ME is not constituted as an Associate Parliamentary Group and therefore only Members of the House of Commons or Lords are permitted membership of the group and only Members of the House of Commons or Lords have voting rights at its meetings.

In Associate Parliamentary groups, applications for membership of the group may be accepted by the group officers from organisations, interest groups, commercial concerns and individuals other than MPs or Members of the House of Lords.

So the only members of the APPG on ME are parliamentarians.

From the office of the Parliamentary Commissioner:

“Groups are only required to register with us the names of their officers and of 20 ‘qualifying members’. The full membership list, including names over and above that, resides with the group and it is for them to ensure that it is comprehensive and up to date. [...] Any MP (ie not just signed up members of the group) is entitled to turn up at any meeting of the group, and to speak and vote at the meeting – unless a subscription is charged in which case voting may be restricted to paid-up members of the group.”

The group’s current office holders and its twenty qualifying members (made up of cross party MPs and members of the House of Lords) can be viewed at the link, below.

http://www.publications.parliament.uk/pa/cm/cmallparty/register/memi383.htm

Under “BENEFITS RECEIVED BY GROUP FROM SOURCES OUTSIDE PARLIAMENT” AfME and The ME Association are listed as jointly providing the secretariat to the Group.

“Action for ME and The ME Association both provides secretarial support (addressing and stuffing envelopes, taking minutes, photocopying).”

AfME and the MEA alternate the task of minute taking and circulation of minutes and agendas for these meetings but they are not members of the APPG Group and their status as organisations and that of their representatives in relation to the Group is no different to that of any other organisation that sends a representative to attend these meetings.

Although APPG groups are not permitted to advertise their meetings as “Public Meetings”, meetings of the APPG on ME are held in House of Commons committee rooms and are open to members of the public, that is, national ME patient organisations, representatives of the committees of “local” and regional ME support groups and other interested parties; they are also open to individual members of the ME community and their carers, who can and do regularly attend and contribute to these meetings.

So none of the five national registered ME patient organisations listed above are members of the APPG on ME but they attend APPG meetings, send their representives to meetings, and in the case of AfME and the MEA, provide the secretariat function.

ME Research UK is a research organisation and a registered charity and is represented at APPG on ME meetings by Mrs Sue Waddle, a former trustee of Invest in ME.

BRAME is an unregistered, non membership organisation run entirely by Christine Harrison and her daughter, Tanya. Both Christine and Tanya attend APPG on ME meetings.

RiME is an unregistered, non membership organisation run by Paul Davies. Paul Davies attends APPG on ME meetings, sometimes supported by other individuals.

A number of ME sufferers and carers of ME sufferers attend APPG on ME meetings and their names will be listed as attendees in the minutes of meetings, and their contributions to these meetings minuted.

I hope this clarifies any misconceptions about policy and proceedings at these meetings and the status of the organisations and individuals who attend them.

A Guide to the Rules on All Party Groups can be downloaded here:

http://www.parliament.uk/documents/upload/PCFSGroupsRules.pdf

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APPG on ME: Agenda for meeting of the Group which is also the Group’s AGM on Wednesday 2 July 2008 as provided by Tony Britton, MEA, secretariat to the APPG on ME on 24 June

Click here  Agenda PDF  for Agenda in PDF format

Meeting of the APPG on M.E. to be held on Wednesday 2nd July, 1.00-3.00pm
Committee Room 19, House of Commons

AGENDA

Business meeting

1. Welcome by the Chairman, Dr Des Turner MP

2. Apologies for absence

3. Minutes of the last meeting.

4. Matters Arising.

Annual General Meeting

1. Election of Chairman

2. Election of Vice-Chairs, Secretary and Treasurer

Business Meeting (continued)

5. Presentation on Child Protection Issues as they affect the families of children with ME by Jane Colby, executive director of The Young ME Sufferers Trust, and Mary-Jane Willows, chief executive of The Association of Young People with ME.

6. Oral Reports:

(a) NICE Guideline: Judicial Review hearing, 17th June

(b) House of Lords debate, 2nd June

(c) Royal College of General Practitioners classification

(d) Lord Darzi and the NHS Review

(e) The Strategic Health Authorities’ consultation on the NHS Review

(e) NHS Plus occupational health leaflets – update

(f) DWP medical guidance

6. Any Other Business

7. Date of Next Meeting

Transcript: BBC Radio Norfolk, Ian Gibson, May 2007

In May 2007, Dr Ian Gibson MP had taken part in another broadcast of the Stephen Bumfrey show, in a strand on ME for ME Awareness Week:

First published on the Co-Cure emailing list on 23 May 2007 

THE FOLLOWING IS AN UNOFFICIAL TRANSCRIPT OF AN EXTRACT FROM THE STEPHEN BUMFREY SHOW, RADIO NORFOLK (UK), 11 MAY 2007. WHILE CARE HAS BEEN TAKEN IN TRANSCRIBING THIS EXTRACT, SOME ERRORS MAY REMAIN (although the absence of Dr Ian Gibson’s answers to the questions concerning the petition by “M.E. Support-Norfolk” is not an error of transcription):

Transcript prepared by John Sayer
23 May 2007

Stephen Bumfry (presenter): So if you’re on Gentleman’s Walk in Norwich on Saturday, you may be asked to sign a petition organised by a Norfolk M.E. support group. Well, Ian, you can tell us more about this, can’t you?

Ian Gibson: Yes, well, a couple of years ago I got visited by some people from Norfolk and from Norwich who were concerned about the government’s position on M.E. and treatment centres and their whole attitude to it and many people didn’t believe that M.E. existed – it was just, you know, people making it up and so on; it certainly does when you meet constituents and I met a lot of people and started an inquiry off.

Now, it wasn’t a perfect inquiry, in the sense that we didn’t have a lot of administrative help and so on, but we’ve got a report out. I got people from the Lords and the Commons and we interviewed people including government ministers on the issue and what we’ve found is that some of the patient groups, now support groups, of which there are quite a few, are working better together, where there had been a bit of rivalry before now they’re working together.

We’re also thinking about putting in a big grant request for biomedical research – there’s an argument whether it’s a sorta psychological illness or biomedical and we came down very much on the biomedical side and said that we really do need some research in that area.

Stephen Bumfry: Didn’t it used to be called “yuppie flu” when it started?

Ian Gibson: Well, that was when it started. Yeah, “yuppie flu”…

Stephen Bumfry (talking over): Yeah, when it was first identified.

Ian Gibson: …well, that gave the game away. It was just people finding reasons for taking a day off work. It’s nothing like, some people are seriously ill…

Stephen Bumfry (talking over): Tell us about the symptoms. I mean, how bad can it be?

Ian Gibson: Well, it, I mean it varies in different people but, I mean, it can be much, it can put people right out of action. It can be, in bed for weeks and they just feel generally ill, muscular problems and so on and just feeling really down. I mean, the flu kind of symptoms kinda describe some of the symptoms but the weakness of people needed some kind of approach medically and the medics in general just thought that some kind of cognitive therapy would be good enough. Well it helps but it’s not good enough. We need to have a real understanding of what causes it.

Stephen Bumfry: Do you think the petition’s gonna make any difference?

Ian Gibson: Yes I think there’s been an awareness week of it and I think our report will make a difference. We had a meeting in London and lots of people are feeling more confident now about moving it on. We’ve had people from Canada and the States over, telling us about what they’re doing there and I think there’s a new excitement in the field and perhaps within – shake government up to do something about supporting it. The treatment centres are very important and there is a possibility of the one in East Anglia disappearing and losing it’s leadership and so on, and we’re fighting to keep  that.