Category: Dr Ian Gibson

Slip slidin’ away (APPG on ME inquiry into NHS services for ME)

APPG on ME inquiry into NHS services for people with ME

According to the draft Timeline circulated at the 1 April APPG on ME meeting:

5 May  Deadline for people with M.E. to submit questions to Dr Turner via website or in writing

(no website has been launched)

12 May  Compilation and issue of final questions

– patient survey
– questions for service providers identifying those that are obtainable under FO1

(no questionnaires or patient surveys have been issued)

19 May  Comment on draft surveys by parliamentarians – return to Dr Turner

Whitsun Recess

21 May -1 June

(Parliament is now in recess)

26 May  Issue final surveys and post them on inquiry website

(that’s today, no website, no surveys)


According to the ME Association (page 7, ME Essential)

“The delay arose because there was an initial problem finding an administrator. This has been resolved with the secondment of a parliamentary intern to the inquiry.”


We still have no Minutes and no transcript of the important 1 April meeting of the APPG on ME.  The inquiry’s Terms of Reference have been placed on Dr Des Turner’s parliamentary website, but no copy of any draft or finalised Timeline has been published.

Nobody knows what’s going on and Dr Turner is not responding to concerns.  Secretariat to the APPG on ME – that’s Action for M.E. and the ME Association, have issued no statements on the progress of these arrangements.

After the fiasco that was the “Gibson Inquiry”, why did the APPG committee think they could undertake this inquiry with unrealistic deadines and no adequate admin resources?

Why has the Secretariat encourage them to do so?

The APPG on ME should pull this inquiry.

The Secretariat should be advising them against going ahead.

RiME: Comments re. Surveys for APPG on ME NHS Services Inquiry

Campaigning for Research into ME (RiME)

NHS Services Inquiry

RiME’s Comments re. Surveys for Services Inquiry was sent to Dr Turner today 29/4/09 (below).

We encourage ME patients and carers to write in (those who can). If you do, please send us copies. We feel it useful in these situations to have a bank of comments. If those running the Inquiry were to publish in 2010 a favorable report and say ‘we had few, if any, adverse comments’ at earlier stages of the process, that comment can then be rebutted (remember Lord Turnberg’s remark re. the Royal Colleges Report in the House of Lords Jan. 04?).

Comments to  (in word format) or Dr Des Turner MP, 179 Preston Road, Brighton, BN1 6AG by May 5.

Note: the May 5 deadline is for surveys comments (oral and written evidence comes later).

RiME will shortly be setting up a new folder on its website entitled ‘Services Inquiry’. It will contain information on the Terms of Reference, RiME’s responses, and others’ comments.


Dear Dr Turner,

The document ‘APPG Inquiry on NHS services provision for people with ME, Draft, Terms of Reference’ was distributed at the APPG meeting April 1 2009. It is not signed but since it begins ‘APPG Inquiry … ‘ it would seem reasonable to assume that you are responsible for its contents as Chair of APPG on ME. The questions below, accordingly, are to you. Time is short, so I will confine my comments to Para. 2:

…. M.E. is classified as a neurological illness under the World Health Organisation classification (ICD G93.3). However the NHS largely uses the term Chronic Fatigue Syndrome instead of M.E. or else adopts the hybrid CFS/M/E. in diagnosing and treating patients. Terminology is a contentious matter. It has some bearing on this inquiry because to use only the precise WHO classification of M.E. above will impede access to information from the NHS that is crucial to the success of this inquiry…..

It is poorly written and difficult to understand. Let’s break it down sentence by sentence:

1. M.E. is classified as a neurological illness under the World Health Organisation classification (ICD G93.3).

Correct. We understand that.

2. However the NHS largely uses the term Chronic Fatigue Syndrome instead of M.E. or else adopts the hybrid CFS/M/E. in diagnosing and treating patients.

ToR 2 trace the 13 CNCCs and 50 LMTs back to the CMO Report 2002. The CMO Report, of course, was never about G93.3 ME (note that a number of ME organisations wouldn’t sign up to it eg the 25% Group wouldn’t sign primarily because it didn’t recognise G93.3). Instead it used a composite term ‘Chronic Fatigue Syndrome/Myalgic Encephalomyelitis’ (‘CFS/ME’). ‘CFS/ME’ is an artificial construct with no diagnostic or research criteria and no scientific precision. What the Government did was to fudge G93.3 ME with a host of other illnesses that would fit a loose definition of CFS; ME, consequently, gets skewed and diluted (1).

So, can you tell us please: Since the APPG on ME recognises G93.3 why is it leading an inquiry on something else?

If the APPG had integrity, should it not (1) distance itself from any services inquiry (2) be critical of the ‘CFS/ME’ Services (3) fight for biomedical ME Research?

3. Terminology is a contentious matter.

It shouldn’t be, unduly. That is, if the powers to be adhered to the ICD G93.3 classification of ME, and the illness described by the Canadian Criteria – a neuro-immune-endocrine-vascular illness.

4. It has some bearing on this inquiry because to use only the precise WHO classification of M.E. above will impede access to information from the NHS that is crucial to the success of this inquiry.

This fourth (final) sentence is very hard to make sense of. It seems to contain a number of confused and conflated points:

It has some bearing on this inquiry

In other words, it is secondary to the inquiry?

Trying to understand the whole paragraph: The inquiry (about ‘CFS/ME’) is the all important thing and mere matters of classification and nomenclature must not be allowed to get in its way?

Again, if the APPG had integrity should it print such a statement? Should it not fight to keep ME separate from loosely defined CFS?

the success of this inquiry. Those words would seem to indicate (well, this is how it is being interpreted by some) that those involved in writing the document predict a successful outcome; that is, a report that concludes favorably on existent ‘CFS/ME’ services in England? I refer you to RiME’s response to ToR 1.

I ask that you answer each of the four questions (underlined) please.


Organisations are asked to submit suggestions re. surveys by May 5.

If the surveys use artificial constructs such as ‘CFS/ME’ then it will render the Inquiry invalid (see above). Moreover, will the Inquiry team approach providers who supply Chronic Fatigue Services; here, the ME disappears altogether. For example, will you approach the Chronic Fatigue Clinics in Kent? Do they not exclude persons with neurological illness via Section 5.4 of their Admittance Criteria?

If you were to, let’s be clear as to what you would be doing: You as Chair of the APPG on ME which recognises G93.3 ME, would be investigating services which exclude patients with neurological illness, yes?

Could you please also answer this fifth question.

Yours Sincerely, Paul Davis RiME

(1) For more information on CMO Report and York Review 1 see RiME Newsletters 3 + 4 (RiME Website).

RiME’s Response to Terms of Reference 1 Nov. 2008….

APPG on ME Inquiry: Video reports

APPG on ME Inquiry: Video reports

You Tube Video reporting of the APPG on ME Inquiry on NHS Services for People with ME

The UK All Party Parliamentary Group on ME (APPG on ME) launched an Inquiry into NHS service provision for people with ME on the auspicious date of the 1st of April 2009. This Inquiry was initially discussed at the previous APPG on ME meeting of the 8th of October 2008. The Inquiry is of similar type and format to the ill fated Gibson Inquiry into ME research and in which Dr. Ian Gibson will be taking a prominent role together with the APPG on ME Chairperson Dr. Des Turner and Lady Mar who all served on Gibson Inquiry Panel.

I have produced a critical appraisal of the virtues and vices of the inquiry and the way it has been set up and the consequent way in which the inquiry will unfold which are contained in two You Tube video reports which can be seen on my You Tube Channel, action4change4me

The first video report deals with the way in which the Inquiry was set up and the way the APPG on ME intend to put their Inquiry into practice, which can be viewed in normal and High Definition video at:

The second video report deals with the background to this Inquiry and way in which the proposal for an Inquiry was developed by the APPG on ME. It can be viewed at:

The APPG on ME is a committee of Parliamentarians who engage in round table discussions with charity representatives and interested members of the public.

I would therefore like to suggest that it may be helpful to understand the dynamics of the APPG on ME and the way in which the ME charities represent ME sufferers and carers by gaining some background on the way in which charities are themselves set up and how they operate.

A video documentary on the types of UK charity/non-profit organisation in the UK compared with the USA can be viewed at:

A video documentary on the way in which UK charities are governed and regulated can be viewed at:

A documentary video giving an introduction to the subject of Charity Constitutions can be viewed at:

Taken as a set of five evidence based documentary video reports these videos aim to inform the viewer. Thus informed, the viewer will therefore be able to gain a depth of understanding of events at the APPG on ME as well as acquiring a level of knowledge about UK ME charities and they way they operate at the APPG on ME and more generally in terms of the legal form, function, structure and purpose of charities from the point of view of an ME sufferer who has spent a great may years involved in the charity and voluntary sector.

Ciaran Farrell  |  4 April 09


APPG press release: NHS inquiry

Today, Action for M.E. has published the APPG on ME press release launching the APPG on ME inquiry into NHS services for people with ME.  When the Inquiry website has been launched, the URL will be posted here.  Thereafter, readers should refer to the Inquiry website for information and progress.

APPG press release: NHS inquiry
03 April 2009

Dr Des Turner MP, Chair of the All Party Parliamentary Group (APPG) on M.E., has today issued a press release, launching an inquiry into NHS service provision for people with M.E./CFS in England.

Press release open hereNHS inquiry Press Release  or

[Ed: The ME Association has posted a more extensive version of the press release which includes Notes for Editors, Background and a copy of the Terms of Reference.  This version of the press release can be read on the ME Association’s news page here:]

The inquiry committee will consist of Dr Turner MP, Dr Ian Gibson MP, Tony Wright MP, Andrew Stunel MP, Peter Luff MP and the Countess of Marr.

Announcing the terms of reference, Dr Turner said:

Terms of Reference open here :  Terms of Reference  or

“The committee will consider written evidence from patients and professionals before inviting individuals and organisations to make oral presentations.

“Written evidence will include the findings of questionnaires, for patients and NHS service providers, which are currently being drawn up.

“People with M.E., carers and professionals are invited to submit suggestions for specific questions which should be asked in these surveys. Our deadline for receiving people’s ideas is 5 May 2009.

“The cut-off point for the submission of written evidence will be 30 June 2009. Oral hearings are likely to take place in the middle of July.”

A website is being set up for the inquiry, which will include the timetable of activities.

Until the website is activated, the contact address for the inquiry is: APPG inquiry M.E. services, c/o Dr Des Turner MP, 179 Preston Road, Brighton BN1 6AG.

The launch was announced at a meeting of the APPG in Committee Room 20, House of Commons, on Wednesday, attended by Andrew Stunell MP, Peter Luff MP, Ceri Finnigan representing Edward Davey MP, Dr Derek Pheby of the National ME Research Observatory, Kirstie Haywood, Royal College of Nursing Research Institute at Warwick University, representatives of the Secretariat – Action for ME and the ME Association – and a number of other groups including the 25% Group, MERUK, RiME, K&SAME and Warwickshire ME Network, individuals with M.E. and carers.

Other items on the APPG agenda included a statement from the West Midlands M.E. Groups consortium,

WMMEG statement open here:  WMMEG statement 2009  or

entitled M.E./CFS – Education and training in the NHS, which expressed concerns about the balance of speakers at the forthcoming NHS CCRNC conference and an article from Pulse which outlined Care Quality Commission proposals to make NICE recommendations (for all conditions) mandatory.

Pulse article:

A speaker from the Care Quality Commission will be invited to clarify the implications of its proposals at the next meeting of the APPG, date provisionally set for 24 June 2009 (to be confirmed).

Care Quality Commission site:

TV presenter Max Cotton and a BBC camera crew from the Politics Show were also present to film and interview 24-year-old Samantha Brown, who has had her benefits withdrawn since she became a student, her constituency MP Des Turner and Jane Colby, Young ME Sufferers Trust.

The Politics Show site:

APPG on ME: Agenda for meeting on 1 April 2009

The Secretariat to the APPG on ME has published the Agenda for the 1 April meeting.  I had asked Sarah Vero, researcher to Dr Ian Gibson MP (Secretary to the APPG on ME committee), if she could confirm who would be undertaking Secretariat duties following the standing down of the ME Association’s Tony Britton.  This request for information was passed to Dr Des Turner (Chair, APPG on ME committee) for a response.  No response has been forthcoming from Dr Turner but it appears that my request has since been passed on to Heather Walker (Action for ME Secretariat to the APPG on ME).  I have, today, received a copy of the Agenda for the 1 April meeting from Ms Walker who does not confirm whether the ME Association will be providing a replacement for Tony Britton.

The APPG had issued an invitation to the new Minister for Disabled People at the DWP, Jonathan Shaw MP, to attend a proposed meeting in February.  It would appear from the Agenda that the APPG has been unable to obtain a commitment from the Right Honourable Jonathan Shaw MP to attend a meeting in February, March or April. 

The focus of the next meeting appears to be the APPG’s  proposed inquiry into NHS services. 

Given the unresolved concerns over the draft Terms of Reference, issued last October, and given the lack of resources and funding for this proposed inquiry, as intimated to me in January by a source close to the ME Association, I am a little surprised that Dr Turner appears to be pressing ahead.

Previously published concerns about the draft Terms of Reference issued in October 2008 can be read here:

and here:

The draft Terms of Reference can be read here:  

Contact details for the APPG Secretariat here:

Responses already published on ME agenda can be read here:

Response from RiME

Response from Invest in ME

Response from 25% ME Group

Response from Suzy Chapman

Response from Greg Crowhurst

Response from Ciaran Farrell


Minutes of the previous meeting (October 2008) can be read here:


Action for M.E. News

All Party Parliamentary Group inquiry

18 March 2009

An APPG inquiry into NHS service provision for people with M.E. will be the focus of the next meeting of the All Party Parliamentary Group on ME to be held 1.30-3pm, Wednesday 1 April 2009, Committee Room 20, House of Commons.

The agenda will be as follows:

1. Welcome by the Chairman

2. Minutes of the last meeting

3. Matters arising

4. APPG Inquiry on NHS service provision for people with ME

i. Parliamentarians who will be considering evidence
ii. Terms of Reference
iii. Website
iv. Questionnaires and submissions of written evidence
v. Timetable

5. Any Other Business

6. Date of Next Meeting

The APPG on M.E. will be open to members of the public. Before they travel, visitors should check for announcements on the Action for M.E. and ME Association websites, as the meeting room may change at very short notice if it is required by a parliamentary committee.

Entrance to the meeting will at the St Stephen’s Door to the House of Commons, and then ask the way to Committee Room 18. Please allow sufficient time in case there are big queues waiting to go through the security gatehouse. There is separate access for people in wheelchairs.

Please note: amendments to minutes should be put in writing to the Secretariat one week before the meeting. E-mail  or write to: Heather Walker, Action for M.E., Canningford House, 38 Victoria Street, Bristol BS1 6BY

APPG on ME: Next meeting to be held on 1 April 2009

Secretariat to the APPG on ME, Action for M.E. and the ME Association, have announced details of the next meeting of the All Party Parliamentary Group on ME (The APPG on ME)

Next meeting of All Party Parliamentary Group on ME – April 1

(Announced on Tuesday, 03 March 2009)

The next meeting of the All Party Parliamentary Group on M.E., chaired by Dr Des Turner MP, will take place 1.30-3pm, Wednesday 1 April 2009, Committee Room 20, House of Commons. Agenda to be confirmed. Further details will be posted in due course.



Clarification regarding membership of the APPG on ME

There have been misunderstandings on some forums that AfME (Action for M.E.), 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.

None of the above are members of the APPG on ME.

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

But 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 the House of Lords are permitted membership of the APPG on ME, and only Members of the House of Commons or Lords have voting rights at its meetings.

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

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 membership 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 : a research organisation and a registered charity (Scotland), represented at APPG on ME meetings by Mrs Sue Waddle, a former trustee of Invest in ME.

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

RiME : unregistered, non membership, 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 are sometimes 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:

The WHO Somatisation Project: The Elephant in the Room

The Elephant in the Room

The WHO Somatisation Project [CISSD Project]

A call for transparency from Action for ME: Part One


Image | belgianchocolate | Creative Commons

Note: This report has undergone revision and updates since publication on 31 January. If quoting or reposting this report, please use the text below.

This report may be republished as long as it is republished in its entirety, unchanged and with the author and source acknowledged.  Note that embedded links may drop out.


APA    DSM    DSM-IV    DSM-V    WHO    ICD    ICD-10    ICD-11    American Psychiatric Association    Diagnostic and Statistical Manual of Mental Disorders    World Health Organization    Classifications    DSM Revision Process    DSM-V Task Force    DSM-V Somatic Distress Disorders Work Group    Somatic Symptom Disorders Work Group    DSM-ICD Harmonization Coordination Group    International Advisory Group    Revision of ICD Mental and Behavioural Disorders    Global Scientific Partnership Coordination Group    ICD Update and Revision Platform    WHO Collaborating Centre    CISSD Project    MUPSS Project    Somatoform    Somatisation    Somatization    Functional Somatic Syndromes    FSS    MUS    Myalgic encephalomyelitis    ME    Chronic fatigue syndrome    CFS    Fibromyalgia    FM    IBS    CS    CI    GWS

A call for transparency from Action for ME: Part One

The WHO Somatisation Project

In late 2006, the attention of a few of us was grabbed by three lines spotted in Action for ME’s year end Report and Accounts:

Extracts: Report and Accounts for the year ended 31 March 2006

Page 15

Movements in restricted funds
Revenue Restricted Funds


“WHO Somatisation Project         Incoming Resources 2006: £24,000    Outgoing Resources 2006: £24,000”


WHO Somatisation Project This grant is provided to help lobby the World Health Organisation for the recognition of M.E. and its re-categorisation as a physical illness.”

Apart from this very brief reference in the 2006 Accounts, nothing had previously been reported by AfME about their involvement in this project. Nothing on AfME’s website, no statements issued and no information in AfME’s members’ magazine, InterAction. Why was a grant needed to lobby the WHO for “the recognition of M.E. and its re-categorisation as a physical illness” when ME has been classified by the WHO as a neurological condition since 1969? [WHO ICD-10, at G93.3]

Keen to establish the nature and purpose of this mysterious “WHO Somatisation project” in which AfME had hitherto been surreptitiously engaged, a question was raised by Ciaran Farrell at the Public Meeting of the GSRME, in February 2007:

Extract: Notes of the Public Meeting of the GSRME, 6 February 2007: compiled by Sarah Vero, researcher to Dr Ian Gibson, MP

Published 09.02.07

Notes on GSRME Public Meeting | 6 February 2007 | Committee Room 10

Ciaran Farrell


Also I would like to ask AFME why they received £24,000 from ? for lobbying the WHO about their document “Defence of Somatization”.  Tell me, how does that help anybody here?

Sue Waddle

I would like to hear the answer to that too. […]

For an accurate record of what was actually raised by Mr Farrell in relation to the “WHO Somatisation project” at this public meeting on 6 February 2007, I include a transcript from the audio:

Transcript, Audio recording GSRME Public Meeting | 6 February 2007


Ciaran Farrell [Person with ME]:


“…and if I may, Dr Gibson, I would like to ask a question of the Action for ME representatives, here, [Ed: Angela Murphy and Helen O’Brian attended the meeting as representatives of AfME] and that is, I’ve noticed from your Accounts that you received a sum of £24,000 from the WHO for a project called the “Somatisation Project” which is listed as lobbying the WHO on behalf of those patients who see the condition as physical”.

Could you please elucidate how you go about this and how that would actually help us here?

[Ed: Dr Ian Gibson MP (Meeting Chair) interjects and invites further questions from the floor…]

Sue Waddle [Representing Invest in ME]:

“I would also be very interested to hear the answer to that.”

[Ed: Second request for a response to this question unacknowledged by Dr Gibson; Dr Gibson makes no move to invite a response from Action for ME and moves discussion forward to other topics; issue is left hanging.]

On 15 February 2007, I contacted Heather Walker, Communications Manager, Action for ME:

From: Suzy Chapman
Sent: 15 February 2007 14:10
To: Heather Walker
Subject: Re: Agenda APPG for ME February 22 meeting

[Unrelated material omitted]

Who would be the member of staff within AfME to talk to about the £24,000 WHO Somatisation Project, please?



Ms Walker responded:

From: Heather Walker
To: Suzy Chapman
Sent: Thursday, February 15, 2007 2:36 PM
Subject: RE: Agenda APPG for ME February 22 meeting

Not sure about this WHO project, Suzy, it must be before my time – but I’ll ask around.

Most likely people (fundraising, finance, CEO) are tied up in a budget meeting all afternoon and away at a Research Observatory meeting tomorrow, so it may be next week before I can get back to you though.

Kind regards,


I then received the following:

From: Heather Walker
To: Suzy Chapman
Sent: Friday, February 16, 2007 11:01 AM
Subject: RE: Agenda APPG for ME February 22 meeting

Just found out the records are held by our finance manager, but he’s away on holiday for 10 days.

I think the person involved was Richard Sykes, Westcare, so it is a while ago.

I thought this an odd and possibly obfuscatory response, since the grant was recorded in the year end 2006 accounting period, making the project in question contemporaneous – not dating from the days of Westcare.  I responded with the following:

From: Suzy Chapman
To: Heather Walker
Sent: Friday, February 16, 2007 11:01 AM
Subject: RE: Agenda APPG for ME February 22 meeting

Dear Heather,

The information concerning this grant is taken from Page 15 of AfME’s latest Annual Report and Accounts which suggests that it is a project which post dates Richard Sykes, who, I understand, retired [from involvement with Westcare] some years ago.

From Report and Accounts Year end 31 March 2006

WHO Somatisation Project Incoming: £24,000 Outgoing: £24,000

“The grant is provided to help lobby the World Health Organisation for the recognition of M.E. and its re-categorisation as a physical illness.”

I may have missed it, but I don’t recall seeing any information in AfME’s “InterAction” about this project.

I should be pleased if you could provide the contact details for the member of staff who can provide information about the nature and purpose of this project.



I received the following two weeks later:

From: Heather Walker
To: Suzy Chapman
Cc: Trish Taylor ; Nick Boatwright
Sent: Friday, March 02, 2007 10:28 AM
Subject: RE: WHO Somatisation Project

Hello Suzy

Sorry for the delay, I have been working away from the office this week.

Haven’t had chance to speak to Trish, [personal information omitted as a matter of courtesy] but I have had some info from Nick [Boatwright, AfME Organisation and Finance Manager] .

The CISSD Project (Conceptual Issues in Somatoform and Similar Disorders) involves examining some of the conceptual issues which have led some psychiatrists and others to claim that CFS/ME should be classified as a Somatoform Disorder – a claim which is hotly contested by ME Organisations and others. Within a much wider field the Project will examine some of the conceptual issues and background assumptions which have led to this claim. It will also consider other ways of classifying CFS/ME. The project also involves examining the current WHO classification of CFS/ME.

I hope this helps.

Kind regards,


Heather Walker

Communications Manager
Action for M.E
Direct line: 0117 930 1323

Action for M.E. is the leading charity dedicated to improving the lives of people affected by M.E.
3rd Floor, Canningford House, 38 Victoria Street, Bristol, BS1 6BY, 0117 927 9551

So now we had a formal name for the project  – The CISSD Project (Conceptual Issues in Somatoform and Similar Disorders).

With Acting CEO, Trish Taylor, unavailable and with the Communications Manager, Heather Walker, giving the appearance of a member of staff who might prefer to keep a lid on this issue, I did not consider it likely that I was going to get a more expansive clarification of the nature and purpose of this project and AfME’s relationship to it. I decided to rely for the time being on my own researches.

To date, Action for ME has still to publish anything about this project or set out the nature of its own involvement and objectives other than the very cursory information published in its year end accounts:

From its last two accounting periods:

Extracts: Report and Accounts for the year ended 31 March 2007

Page 7

“Since April 2007 another three projects have completed including the WHO Somatisation project.”

Page 13

Movements in restricted funds
Revenue Restricted Funds


“WHO Somatisation Project         Incoming Resources 2007:  £18,750    Outgoing Resources 2007:  £18,750”

Page 14

“WHO Somatisation Project. This grant is provided to help lobby the World Health Organisation for the recognition of M.E. and its recategorisation as a physical illness. This grant ceased in March 2007.”


Extracts: Report and Accounts for the year ended 31 March 2008

Page 14

“CISSD Project

“This grant, from the Hugh and Ruby Sykes Charitable Trust is provided to disseminate the findings of the WHO Somatisation Project whose research came to an end in 2006. The aim is to produce a number of recommendations which, if accepted by the World Health Organisation, would be of direct benefit to people with M.E.”

Page 23

Movements in restricted funds
Revenue Restricted funds (cont’d)


“CISSD Project         Restricted Funds 2008: £20,000     Total Funds 2008:  £20,000”

So although the source of the grant in 2008 for £20,000 “to disseminate the findings of the WHO Somatisation Project whose research came to an end in 2006” is recorded as having been awarded by The Hugh and Ruby Sykes Charitable Trust, it isn’t at all clear where the initial grant of £24,000 in 2006 came from and either is the provenance of the £18,750 evident, recorded in year end 2007.

Dr Richard Sykes

Dr Richard Sykes is indeed involved in the CISSD Project but it had nothing to do with Westcare, which was absorbed into Action for ME in 2002.  Dr Sykes is listed as an “Honorary Member” of the WHO Collaborating Centre for Research and Training in Mental Health and Section of Mental Health Policy at Kings College London, Institute of Psychology.  Dr Sykes is the Co-ordinator of the CISSD Project.

“Richard Sykes

is the co-ordinator of the interdisciplinary and international CISSD (Conceptual Issues in Somatoform and Similar Disorders) Project which will present recommendations to the World Health Organisation and the American Psychiatric Association for the revision of the current classifications in the International Classification of Diseases and the Diagnostic and Statistical Manual. The Project involves looking at the precise criteria for Somatization Disorder (if this construct is to be retained), the use of patient-friendly language, and if and how the distinction between mental and physical disorder should be drawn. He taught and researched in Philosophy for several years before retraining in social work and working in social services departments in the UK. He then set up Westcare UK, a charity for people with Chronic Fatigue Syndrome/ME which merged with Action for ME ( ) in 2002. As director of Westcare UK, he was the co-ordinator of the National Taskforce on CFS/ME, which produced an influential report in 1994.”

What’s it all about, AfME?

Why has AfME published no information to date about this Project and its involvement with it?

Have there been three tranches of funding awarded to AfME in relation to this Project, and if not, how does the figure of £18,750 (2007 accounting period) relate to the initial award of £24,000 (2006 accounting period)?

What is the source of the grant awarded in 2006 and the second grant in 2007 and why was this not disclosed in the 2006 and 2007 Report and Accounts?

Has this funding been provided to support the work of the Project Co-ordinator, Dr Richard Sykes, or is the WHO or another organisation funding Dr Sykes’ work on this Project, and if so which organisation?

To whom is Dr Richard Sykes directly accountable?

On what basis does AfME relate to the CISSD Project and to whom is AfME directly accountable with regard to the Project?

If the funding in 2006 and 2007 was for the sole use of AfME, to what purpose has this funding been put?

Is AfME prepared to publish a breakdown of how this funding has been spent in 2006 and 2007?

According to information given in the 2008 Accounts, an additional grant of £20,000 has been provided to “disseminate the findings of the WHO Somatisation Project”:

On which organisation’s behalf and to which target audience(s) is dissemination of the Project’s findings being undertaken and to whom is AfME directly accountable for this task?

How is the more recent award of £20,000 from the Hugh and Ruby Sykes Charitable Trust, which is recorded as having been awarded to “disseminate the findings of the WHO Somatisation Project”, going to be spent?

What are the implications for the ME patient community if recommendations described as being “of direct benefit to people with M.E.” were not accepted by the WHO?



While we wait for Action for ME to issue a statement on the CISSD Project and to clearly set out its role in relation to the Project and the purpose to which these grants have been put, here is some further information and links relating to the Project and some questions for the ME Association:

The make up of the CISSD Project Work-Group

International Chair: Professor Kurt Kroenke, Indiana University School of Medicine and Regenstrief Institute, Indianapolis;
UK Chair: Professor Michael Sharpe
, Department of Psychiatry, University of Edinburgh;
Principal Collaborator: Professor Rachel Jenkins, WHO Collaborating Centre;
Co-ordinator: Dr Richard Sykes, WHO Collaborating Centre.
Project Advisor: John Bradfield  [Source: WHO  ICD Update and Revision Platform ]

The Conceptual Issues in Somatoform and Similar Disorders Work-Group includes, in addition to the above: Natalie Banner, Arthur Barsky, John Bradfield, Richard Brown, Frankie Campling, Francis Creed, Veronique de Gucht, Charles Engel, Javier Escobar, Per Fink, Peter Henningsen, Wolfgang Hiller, Kari Ann Leiknes, James Levenson, Bernd Löwe, Richard Mayou, Winfried Rief, Kathryn Rost, Robert C. Smith, Mark Sullivan, Michael Trimble. [Source: ]

See paper published by the CISSD Project Chairs and Principal Collaborator, Rachel Jenkins, in July 2007:

Review Articles

Psychosomatics 48:4, July-August 2007

Revising the Classification of Somatoform Disorders: Key Questions and Preliminary Recommendations

Full paper in PDF format:

Full paper in html format:

or open PDF here on ME agenda CISSD review

Revising the Classification of Somatoform Disorders: Key Questions and Preliminary Recommendations
Kurt Kroenke, M.D., Michael Sharpe, M.D., and Richard Sykes, Ph.D.

Received January 14, 2007; accepted January 19, 2007. From Indiana University School of Medicine and Regenstrief Institute, Indianapolis, IN; the School of Molecular and Clinical Medicine, Univ. of Edinburgh, Edinburgh, UK, and the WHO Collaborating Centre, Institute of Psychiatry, Univ. of London, UK.

Send correspondence and reprint requests to Kurt Kroenke, Indiana Univ. School of Medicine and Regenstreif Institute, Indianapolis, IN 46202. e-mail:

Psychosomatics 48:277-285, July-August
© 2007 The Academy of Psychosomatic Medicine

Extract: Revising the Classification of Somatoform Disorders: Key Questions and Preliminary Recommendations, Kurt Kroenke, M.D., Michael Sharpe, M.D., and Richard Sykes, Ph.D.

“The Conceptual Issues in Somatoform and Similar Disorders (CISSD) Project (see Acknowledgment) was launched several years ago by Richard Sykes to stimulate a multidisciplinary dialogue about the taxonomy of somatoform disorders and the medical diagnoses of functional somatic syndromes (e.g., irritable bowel syndrome, chronic fatigue syndrome, fibromyalgia). A series of three CISSD workshops, spanning a total of 6 days were held in London, UK (May 20, 2005), Oxford, UK (March 29–31, 2006), and Indianapolis, IN (May 10–11, 2006). Proceedings of the 2005 Workshop have recently been published.19–26 The 2006 workshops brought together American and European experts to further consider the key questions and potential changes to be addressed in any revision of the Somatoform Disorders category, with the explicit aim of informing the development of DSM–V.”

NB: A brief report and update, The draft report of the CISSD Project: R Sykes, was published in June 2006 in the Journal of Psychosomatics, see below.

In September 2006, Dr Sykes participated in the 26th European Conference of Pyschosomatic Research 2006, Dubrovnic, Croatia.  He is listed in the Symposium Programme as: WHO Collaborating Centre, Institute of Psychiatry, University of London.

Dr Sykes chaired and co-chaired several plenary sessions including: Plenary Symposium 7: “Conceptual Issues in Somatoform and Similar Disorders” in which he presented on “Somatoform Disorders: What are patients’ concerns and do they matter?” and “Emerging proposals from the CISSD Project”. (C Dowrick also presented at this session.)

PDF here Sykes Dubrovnic Somatisation Symposium programme or go here


In April 2007, the ME Association publicised the 2007 Melvin Ramsay Society Meeting

This annual meeting was attended by Dr Charles Shepherd, The ME Association, who presented an update on the  NICE Guideline on CFS/ME.

Dr Richard Sykes also gave a presentation at this Ramsay Society meeting titled the “Conceptual issues in the classification of ME/CFS” in which he reported on the work of the CISSD Project group.

See report by Regina Clos at:  [ Auto Google translation of Regina Clos’s report: ]

But the ME Association published no report on this meeting or on Dr Sykes’ talk. The content of this talk would have presented the ME Association with an opportunity to comment publicly on the CISSD Project, but the Association has issued no public comment regarding the CISSD Project, at all, nor its implications for the ME/CFS community. If the CISSD Project has been discussed at MEA Board of Trustees meetings, it has not been reported on in the summaries of its board meetings and there are no references anywhere to the CISSD Project on the ME Association’s website.

Some questions for the ME Association

Has this CISSD Project, AfME’s involvement in it and the Project’s implications for ME/CFS patients been discussed amongst the members of the ME Alliance?

[Note:  The status of the ME Alliance remains unclear, because Sir Peter Spencer has not been prepared to answer questions regarding its current status.]

Why has this CISSD Project and its implications never been discussed at a meeting of the APPG on ME?

The ME Association is surely aware of this Project – why has the Association had nothing at all to say about the Project?

Has the ME Association been approached for involvement in this Project and has there been any input by the Association?

Is the ME Association prepared to publish a commentary around their understanding of this Project and setting out the implications of the Project for the benefit of its members and for the wider ME community?

I do not consider that we should have to wait until AfME “disseminate the findings of the WHO Somatisation Project” for detailed information about this Project, what AfME’s involvement in it has been over the past three years and how these various grants have been spent.

Is the ME Association prepared to challenge AfME to be open and transparent about the Project as a whole, and AfME’s own involvement in it?


Further reading:

Regina Clos has published a copyright report of the Ramsay Society Meeting 2007 at:

at which Dr Richard Sykes presented on the “Conceptual issues in the classification of ME/CFS”.

The report is in German and you will need to use an auto translator for the gist.

Update:  Auto Google translation of Regina Clos’s report:



Published paper: 2006:

Somatoform disorders in DSM-IV: mental or physical disorders?


Sykes R.

J Psychosom Res. 2006 Apr;60(4):341-4.

WHO Collaborating Centre, Institute of Psychiatry, University of London, United Kingdom.

OBJECTIVE: To examine analytically the question of whether the characterization of somatoform disorders (SFDs) in Diagnostic and Statistical Manual, Fourth Edition (DSM-IV) provides adequate grounds for classifying them as mental disorders rather than as physical disorders.

METHODS: Analytical examination.

RESULTS: There are prima facie grounds for classifying SFDs as physical disorders since they are characterized by physical symptoms. The characterization of SFDs in DSM-IV does not provide adequate grounds for classifying them as mental disorders.

CONCLUSION: The spectrum of SFDs is drawn too widely in DSM-IV. At least some of the conditions now listed as SFDs in DSM-IV should be either given a dual diagnosis or classified simply as physical disorders.

PMID: 16581355 [PubMed – indexed for MEDLINE]


Published report: 2006:

The draft report of the CISSD project R.D. Sykes
Journal of Psychosomatic Research June 2006 (Vol. 60, Issue 6, Pages 663-664)

[Subscription only; no Abstract available; not indexed on MEDLINE]

The Editor of the Journal of Psychosomatic Research is Professor Francis Creed. Francis Creed is Professor of Psychological Medicine in the Psychiatry Research Group , School of Medicine, University of Manchester and was a member of the CISSD Project Work-Group. Professor Creed has also been a member of the American Psychiatric Association’s DSM-V workgroup on Somatic Distress Disorders since 2007.


On 30 January, Stephen Ralph of MEActionUK published a commentary via Co-Cure in which the following WHO document was highlighted and which will be of interest:

Summary Report of the 3rd Meeting of the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders, 11 – 12 March, 2008


Paper: 2007:

Current Opinion in Psychiatry:Volume 20(2)March 2007p 143-146


Are somatoform disorders ‘mental disorders’? A contribution to the current debate [Behavioural medicine: Edited by Winfried Rief and Mohan Isaac] Rief, Winfried a; Isaac, Mohan b

a Clinical Psychology and Psychotherapy, University of Marburg, Marburg, Germany b University of Western Australia, Perth, Australia


Purpose of review: During the last 2 years, a debate has started over whether the somatoform symptoms / medically unexplained symptoms are wrongly placed under the category of mental disorders (section F in International classification of diseases-10 and in Diagnostic and statistical manual for mental disorders-IV).

Recent findings: Most experts on medically unexplained symptoms agree that there is a substantial need for revision of the diagnoses of somatoform disorders. While some authors suggest moving the somatoform disorders from axis I to axis III, others suggest improving the classification of these syndromes on axis I, such as by using empirically derived criteria and by introducing psychological descriptors which justify the categorization as a mental disorder. In contrast to the situation when the last version of Diagnostic and statistical manual for mental disorders was published, new empirical data has shown some psychological and behavioural characteristics of patients with somatoform symptoms. These and other empirically founded approaches can be landmarks for the revision of this section in Diagnostic and statistical manual for mental disorders-V and International classification of diseases-11.

Summary: The classification of somatoform disorders as ‘mental disorders’ could be justified if empirically founded psychological and behavioural characteristics are included into the classification process. Attention focusing, symptom catastrophizing, and symptom expectation are outlined as possible examples of involved psychological processes.

PMID: 17278912 [PubMed – indexed for MEDLINE]



Journal of Psychopathology 2008;41:4-9 (DOI: 10.1159/000109949)

Validity of Current Somatoform Disorder Diagnoses: Perspectives for Classification in DSM-V and ICD-11

Free PDF of full paper:

or open here on ME agenda  PDF: ICD-11

Bernd Löwe a, Christoph Mundt b, Wolfgang Herzog a, Romuald Brunner c, Matthias Backenstrass b, Klaus Kronmüller b, Peter Henningsen d

Departments of a Psychosomatic and General Internal Medicine, b Psychiatry and c Child and Adolescent Psychiatry, Center of Psychosocial Medicine, University of Heidelberg, Heidelberg, and d Department of Psychosomatic Medicine and Psychotherapy, Technical University of Munich, Munich, Germany


Continued in Part Two, with a report on the links between Dr Richard Sykes and Sir Hugh Sykes:

Compiled by Suzy Chapman

Published: 31.01.09
Revised: 01.02.09
Updated: 03.02.09: Addition, confirmation that Dr C Shepherd (MEA) attended and presented at Ramsay Society Annual Meeting 2007
Updated: 04.02.09: Addition, Abstract, R Sykes 2006 paper; Correction, URL for html version of paper “Revising the Classification of Somatoform Disorders: Key Questions and Preliminary Recommendations”; Addition, Abstract, 2007 review: “Are somatoform disorders ‘mental disorders’? A contribution to the current debate” [Behavioural medicine Edited by Rief, Isaac]
Update: 05.02.09: Addition, TinyURL for auto translation report on Ramsay Society Meeting 2007
Update: 21.02.09: Addition, link, R Sykes, 2006 report, The Draft report of the CISSD project; Information relating to Prof Francis Creed.

House of Commons Recess dates for 2009, APPG on ME inquiry

House of Commons Recess dates for 2009 (All recess dates are provisional)

House returns: Monday, 12 January 2009 – Half Term: House rises: 12 February 2009

House returns: 23 February 2009 – Easter: House rises: 2 April 2009

House returns: 20 April 2009 – Whitsun: House rises: 21 May 2009

House returns: 1 June 2009- Summer: House rises: 21 July 2009

Summer recess

House returns: 12 October 2009

In addition to the recess dates listed above, the House will not sit on the following Bank Holiday: 4 May


The meeting of the All Party Parliamentary Group on ME, which had been anticipated to take place in December pending availability of a potential speaker, was postponed.  The next meeting is provisionally scheduled for February.  Parliamentary half term runs from 12th – 23rd February.  It would be unfortunate if any meeting of the APPG held in February were to clash with the Judicial Review of the NICE Guideline on “CFS/ME”, scheduled for a High Court hearing on Wednesday 11th and Thursday 12th February.  (See previous two postings here and here.)

Meetings of the APPG on ME are open to members of the ME community, representatives of national ME patient and research organisations, representatives of local and regional ME/CFS support groups and other interested parties.  Paul Davis of RiME urges everyone well enough to attend the next meeting to do so.  I will post the Agenda, here, as soon as an Agenda has been circulated by the secretariat.   If you are planning to attend, please check back for any last minute changes to House of Commons’ committee room and time.

No further information on MP Dr Des Turner’s proposed inquiry into NHS service provision for people with ME has emerged since the last meeting of the APPG, in October.  Minutes of the October meeting can be read here on ME agenda.

The final Terms of Reference for this proposed APPG on ME inquiry (which will be an unofficial inquiry) have yet to be published and it remains unknown what amendments have been made to the draft document as presented at the October meeting or whether the APPG has taken any heed of the many concerns submitted to Dr Turner and the APPG secretariat (Action for ME  and the ME Association) in November concerning the inquiry’s Terms of Reference, in particular, and the scope, administration, aims and objectives of this proposed inquiry, in general.

Dr Turner (APPG Chair), who intiated this project, has still to announce a chair and a panel to carry out the inquiry but it is understood that Dr Richard Taylor MP, Dr Ian Gibson MP and the Countess of Mar have committed to membership of an inquiry panel.

On the matter of timescales, it had been stated at the October APPG that:

“The Chair would send out an invitation to submit written evidence before Christmas with a view to hearing oral evidence in February/March and publication before the summer recess (subject to funding).” Minutes APPG on ME meeting, October 2009

But no deadlines for submissions of Written Evidence have been announced by the APPG and neither have any dates for hearings for Oral Evidence.

Dr Charles Shepherd (MEA), has said that the most important source of evidence will be that sent in by people with ME/CFS who have used hospital based services and that he hopes there will be a large response when the Inquiry calls for patient evidence which he says will probably, in part, take the form of a questionnaire.

But calls for patient evidence and a patient questionnaire have yet to be issued by the APPG.

On the matter of funding for this unofficial inquiry, it had been stated by Dr Turner at the October APPG that:

“…resourcing the Inquiry was an issue as a great deal of work would be involved. A similar Inquiry, resourced by a special interest group, had recently cost £40k. Suggestions to raise money included issuing an appeal for funds or approaching a pharmaceutical company for sponsorship.” Minutes APPG on ME meeting, October 2009

No announcement about a source/sources of sponsorship has been made.

Perhaps it is the case that the APPG on ME committee has decided to review its plans for this proposed inquiry into NHS service provision until after the Judicial Review of the NICE Guideline for “CFS/ME” (G53) has taken place.

Notwithstanding the imminence of the NICE Judicial Review, given that the next meeting of the APPG on ME is not scheduled until February, given the unresolved issues around the inquiry’s draft Terms of Reference, the ambitious scope of this project, the inquiry’s lack of funding, uncertainties over who is going to be responsible for the collection and processing of data and the administration of other processes through which this proposed inquiry will be undertaken, it seems unrealistic of the APPG and the secretariat to the APPG (AfME and the MEA), who have so far been assisting with the administration of the inquiry, to consider that this project could be completed before the summer recess.

I will post any official updates on the progress of this proposed inquiry as these are issued or as information becomes available.  

A NICE DILEMMA by Margaret Williams, Part Three

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

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


A NICE Dilemma? by Margaret Williams  published 15 December 2008

Part Three

Community Dietician Judith Harding was a member of the CNCC Collaborative 2004 – 2006, CFS/ME Service Investment Programme 2004 -2006, “Enabling People”: Implementation of Clinical Service Developments for Multi-Disciplinary Chronic Disease Management, Penninsula Medical School, CFS/ME Programme (Clinical Lead: Professor Anthony Pinching; Programme Director: Patricia A Noons).

Dr Fred Nye, Clinical Champion of the Liverpool “CFS” Clinical Network Co-ordinating Centre, achieved notoriety in 2005 when an advertisement for “therapists” to work in his Centre caused justified offence. The advertisement informed applicants patients with “CFS/ME” have perpetuating illness behaviour; that they experience barriers to understanding; that there can be significant barriers to accepting the changes needed in behaviour, which have to be overcome in therapy in order to facilitate a successful outcome; that the Fatigue Therapist will be required to modify patients’ predisposing personality style and provide motivation to patients with CFS; that some clients may be resistant to working in a psychological framework and that there may be verbal aggression (Chronic Fatigue Treatment Service: Ref: 2570. Closing date: 31st January 2005).

In 2001, Nye published his view in the BMJ (2001:322:387-390) that “CFS” patients “develop a strong physical perception of the condition” and that “Extensive research has failed to identify any serious underlying pathology”. Such a statement is easily shown to be erroneous. Nye continued: “Reduction in activity results in cardiovascular and muscular deconditioning, which exacerbates symptoms. We have developed a treatment for CFS (that) involves educating patients about the medical evidence of physical deconditioning”. The article re-iterated the take-home message: “No serious underlying pathology has been identified in patients with CFS. Cognitive behaviour therapy targeted at changing illness beliefs and graded exercise helps some patients”. However, Nye was compelled to concede that an intention to treat analysis showed that 32% of patients still complained of fatigue one year later. Continue reading “A NICE DILEMMA by Margaret Williams, Part Three”

APPG on ME: Minutes of meeting, 8 October 2008

APPG on ME: Minutes of meeting, 8 October 2008

PDF of Minutes (12 pages)

Minutes 8.10.08


APPG minutes of meeting held on 8 October 2008

Published: 15 December 2008

The next meeting of the APPG is likely to take place in February (date and speaker to be confirmed).

Further information about the proposed NHS services inquiry will be one of the items on the agenda.

All Party Parliamentary Group on M.E.

Chair: Des Turner MP

Vice-Chairs: Andrew Stunell MP; Tony Wright MP

Secretary: Ian Gibson MP

Treasurer: David Amess MP

Minutes of the meeting of the All Party Parliamentary Group on M.E. held at 4pm, Wednesday 8 October 2008

Committee Room 17, House of Commons



Dr Des Turner MP (Chairman)

Andrew Stunell MP (Vice Chairman)

Tony Wright MP (Vice Chairman)

Rt Hon Tom Clarke MP

Kerry McCarthy MP

Janet Dean MP

Damian Green MP

Sir Robert Smith MP

The Countess of Mar

James Bolton, DWP

Phill Wells, PS, Mr Purnell

Koyes Ahmed, Office of Des Turner MP


Tony Britton (MEA)

Dr Charles Shepherd (MEA)

Sir Peter Spencer (Action for M.E.)

Heather Walker (Action for M.E.)


Organisational representatives and people with M.E.

Jane Colby (Tymes Trust)

Christine and Tanya Harrison (BRAME)

Joy Birdsey (Kent and Sussex Alternative Group for ME)

Doris Jones (25% Group)

Janet Taylor (Kirklees Independent ME Support Group)

Di Newman (Peterborough ME and CFS Self-Help Group and Cambridgeshire Neurological Alliance)

Bill and Janice Kent (reMEmber)

Barbara Robinson (Suffolk Youth and Parent Support Group)

Page 2

Sue Waddle (MERUK)

Paul Davis (RiME)

Natasha Posner

Annette Barclay

Ciaran Farrell

Augustine Ryan

Stephen Jones


Janet Anderson MP, Tim Boswell MP, Peter Bottomley MP, Graham Brady MP, Kelvin Hopkins MP, Baroness Howe of Idlecote, Dr Brian Iddon MP, Elfyn Llwyd MP, John Leech MP, Ann McKechin MP, Eddie O’Hara MP, Ken Purchase MP, Baroness Jo Valentine, Rudi Vis MP, Sir Nicholas Winterton MP.

1. Welcome

Dr Turner welcomed everyone to the meeting and introduced the main speaker, The Rt Hon James Purnell MP, Secretary of State for Work and Pensions, who was accompanied by James Bolton, Deputy Chief Medical Adviser at the DWP. Continue reading “APPG on ME: Minutes of meeting, 8 October 2008”