The WHO Somatisation Project: The Elephant in the Room

January 31, 2009 — meagenda

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.

Keywords

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 questio 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?

Regards,

Suzy

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,

Heather

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.

Regards,

Suzy

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

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

www.afme.org.uk

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.

http://www.iop.kcl.ac.uk/departments/?locator=430&context=926

“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 (www.afme.org.uk ) 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: http://psy.psychiatryonline.org/cgi/reprint/48/4/277 ]

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: http://psy.psychiatryonline.org/cgi/reprint/48/4/277.pdf

Full paper in html format: http://psy.psychiatryonline.org/cgi/content/full/48/4/277

or open PDF here on ME agenda CISSD review

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: kkroenke@regenstrief.org

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 http://www.hdpi.hr/plansymp.htm

——————–

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

http://www.meassociation.org.uk/content/view/203/70/

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: http://www.cfs-aktuell.de/mai07_1.htm [ Auto Google translation of Regina Clos's report: http://tinyurl.com/sykesgermantoenglish ]

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?

MEA: Summary Board of Trustees meeting: 27 January 2009

January 31, 2009 — meagenda

Ed: The MEA has published a summary of its January meeting of the Association’s Board of Trustees.

No update on the progress Dr Des Turner’s proposed APPG on ME inquiry into NHS service provision for people with ME is reported ( see previous posting: Next meeting of the APPG on ME ).

No date appears to have been set, yet, for a February meeting of the APPG on ME.

The summary informs that the second meeting of the MRC’s “Expert Group on ME/CFS Research” is planned for March. The MRC advised me in January that revisions to the group’s Terms of Reference are anticipated to be agreed at this second meeting of the group and that a copy will be provided to me under the FOI Act as soon as the Terms of Reference are agreed. A copy will be published here on ME agenda.

The web pages for the entry on “Chronic Fatigue Syndrome” on the NHS Choices website, referred to in the summary below, can be found here

——————–

ME Association | 30 January 2009

ME Association: Summary Board of Trustees meeting: 27 January 2009

This is a short summary of key points to emerge from a meeting of The ME Association Board of Trustees that took place at our Head Office in Buckingham on Tuesday 27 January 2009. Informal discussions also took place on a number of issues the night before.

Please note that this is a summary of the Board meeting – not the official minutes.

The order of subjects below is not necessarily in the order that they were discussed.

PRESENT

Trustees:

Ewan Dale (ED) – Honorary Treasurer
Neil Riley (NR) – Chairman (by telephone link)
Charles Shepherd (CS) – Honorary Medical Adviser

Officials:

Gill Briody (GB) – Company Secretary
Tony Britton (TB) – Publicity Manager

Apologies:
Mark Douglas (MD)
Rick Osman (RO) – Vice Chairman
Ba Stafford (BS)

FINANCES

ED reported that overall income from subscriptions, donations, gift aid and general fundraising for the year ending December 2008 has been roughly in line with expenditure, which included some significant additional items due to the Head Office move at the beginning of 2008. This is very encouraging given the major economic problems that started to emerge during the latter part of 2008. However, like all charities we are now facing a situation where people may be reducing the amount of money they are able or willing to give to the charity sector. And at the same time demand on our support and information services may well start to increase. Trustees agreed to continue to maintain a very tight control over expenditure and to secure the best rates of interest on money held in our unrestricted and restricted (ie research fund) reserve accounts – where there is going to be a significant fall in income as a result of the base rate cuts.

The annual stocktaking of literature and goods for sale has been successfully completed.

FUNDRAISING INITIATIVES

Amazon Walk to raise funds for a tissue and post-mortem bank: BS had sent in an email report on Ed Stafford’s progress on the Amazon Walk. Ed’s most recent blog posting comes from Milagos, Peru. He will shortly be collecting his visa for entry into Brazil – which makes about 3,000 km to go as the crow flies!. Progress can be followed on the Amazon Walk blog at www.walkingtheamazon.com . Ed’s fundraising page for ME research at JustGiving can be found at: http://www.justgiving.com/walkingtheamazonmeresearch . Just over £5,000 has been raised so far.

Mobile phone and ink cartridge returns and trolley coins Trolley coins can still be ordered using the pdf ORDER FORM on the MEA website (www.meassociation.org.uk) ,or the insert in the February issue of ME Essential magazine, or by phoning MEA Head Office: 01280 818964/818968.

Fundraising information TB produced a draft layout for our new fundraising information leaflet.

A number of other fundraising initiatives were discussed, including a decision to once again sell Christmas Cards in 2009. A number of possible designs were considered.

2009 AGM AND TRUSTEE ELECTIONS

Trustees agreed to a timetable for the 2009 AGM and trustee elections. The AGM will take place at Head Office in late June or early July. Trustees standing for election this year are Mark Douglas and Barbara Stafford. Further information on the AGM and trustee elections will appear in the February issue of ME Essential magazine.

We are very keen to hear from anyone who would like to discuss the possibility of joining the MEA as a trustee. Applications are welcome from people with ME, carers, and anyone who has skills which they feel could be of benefit to the charity. In order to proceed with an application, non members would have to become members of the MEA.

NICE JUDICIAL REVIEW

CS updated trustees on administrative arrangements for the NICE judicial review. The two day Hearing will take place in the High Court in London on 11 and 12 February 2009. A representative from the MEA will attend the Hearing. More information, as it comes in, will appear on MEA website:

http://www.meassociation.org.uk/content/blogcategory/30/161/

PARLIAMENTARY

APPG Inquiry into NHS Services CS reported on progress with the Inquiry that has been initiated by Dr Des Turner, Chairman of the APPG. Further information will appear on the MEA website news section as it becomes available.

APPG The next meeting of the APPG is intended to take place in February and it is hoped that there will be a presentation from Jonathan Shaw, Minister for Disabled People. As soon as a date becomes available it will appear on the MEA website news section. The minutes of the 8 October meeting can be found on the MEA website (news section archive).

Countess of Mar’s Group: FORWARD ME CS reported on the second meeting of this group that took place at the House of Lords on Tuesday 18 November. A website has been set up where information about the group and minutes from meetings are available. A summary of the November meeting will appear in the February issue of ME Essential magazine. Forward ME website: www.forward-me.org.uk

RESEARCH

Ramsay Research Fund (RRF) funding for Professor Julia Newton et al, University of Newcastle CS updated trustees on the new research study into muscle function in ME/CFS that was approved at the last Board meeting in November. Further information about this study can be found at the end of this summary.

ME Observatory Steering Group CS reported that the next Steering Group meeting will take place on Tuesday February 3.

Post-mortem tissue bank feasibility study CS reported that the next meeting of the Steering Group that is overseeing this new item of research that will be examining various aspects of how an ME/CFS specific tissue/post-mortem bank could be set up will take place on February 3rd. CS will also be having a separate meeting with the researchers on Monday 2 February. It was agreed that CS should visit one of the existing post-mortem/tissue banks in the UK to take this preparation forward.

Medical Research Council (MRC) Expert Group on ME/CFS Research CS updated trustees on the current situation regarding this group, which has been set up by Professor Stephen Holgate, and reported on the first meeting of the group that was held in London on 15 December. The MEA gave a presentation on the role of the charity sector in initiating and funding research. A summary of this meeting will appear in the February issue of ME Essential magazine. A further meeting is being planned for March.

Ramsay Research Fund constitution Trustees agreed to start work on a new constitution for the Ramsay Research Fund which will be more relevant to the current situation regarding ME/CFS research.

Application for funding in relation to post-mortem research Trustees discussed a new funding proposal that is awaiting ethical approval.

Other applications for research funding CS updated trustees on several other preliminary applications for research funding that have been received.

Practice nurses’ attitudes to cause and management of ME/CFS Trustees discussed the results of this recently published research paper, which indicates a very poor understanding of the pathological factors that may be involved in the causation of ME/CFS. Some of the nurses who were interviewed also displayed very negative or prejudicial views about people with ME/CFS. CS has written to members of the FORWARD ME Group to ask for a discussion on nurse education to be placed on the Agenda for the next meeting. The MEA has approached the Royal College of Nursing about ME/CFS education in the past and the results of this study indicate that we need to do so again. The full paper can be accessed via the news section (January 2009 archive) of the MEA website.

SCOTTISH CLINICAL GUIDELINES

ED reported on the current state of progress relating to the development of clinical guidance for doctors in Scotland – a document that is partly being based on the content of the MEA purple booklet for health professionals: ‘ME/CFS/PVFS – An Exploration of the Key Clinical Issues – and the Public Health Needs Assessment. The timescale for both projects has had to be re-organised with redrafted documents relating to both initiatives coming out in February for further stakeholder consultation. The aim is to achieve publication during ME Awareness Week in May.

NHS DIRECT

TB reported on a meeting he had attended on January 20th of the NHS Direct Access Issues Group at NHS Direct HQ, where the possibility of MEA involvement in future work on chronic and long term conditions was mentioned. TB has been invited to give a presentation to the group at their next meeting in April. We are also working with NHS Choices on a video about ME/CFS.

MEA ANNUAL MEDICAL MEETING

Trustees discussed arrangements for the 2009 Annual Medical Meeting. CS is going to contact local groups to see if anyone would like to co-operate with us in the way that the Colchester Group did for the 2008 meeting.

OTHER ME/CFS MEETINGS

Royal Society of Medicine CS reported on arrangements for the patient meeting in the ‘Medicine and ME’ series that will be held at the Royal Society of Medicine on Saturday 11 July. More information on this meeting, including how to apply to attend, can be found in the February issue of ME Essential magazine.

Invest in ME Conference Trustees agreed to both TB and CS attending this conference in May. We are also going to ask the organisers if the MEA can have a display stand at the conference.

MEA MANAGEMENT QUESTIONNAIRE

TB updated trustees on the analysis of data from around 3500 on-line questionnaires and 750 paper questionnaires. The overall response makes this the largest ever survey of public opinion about management issues that has ever been undertaken here in the UK, possibly in the world. A comprehensive summary of the results will appear in the February issue of ME Essential magazine and it was agreed to start work on the preparation of a more substantial report which summarises and comments on the results. All of the relevant patient feedback will be passed to the APPG Inquiry into NHS Services.

MEA LITERATURE

A new information leaflet on PHI/permanent health insurance will shortly be made available.

MEA literature can be obtained using the pdf ORDER FORM on the MEA website: http://www.meassociation.org.uk, or the 8 page order form insert in the February issue of ME Essential magazine, or by phoning Head Office on 01280 818064/818968.

MEA WEBSITE

The new regular on-line survey feature has proved to be very popular. So far, we have surveyed public opinion on reactions to flu vaccination (November); the NICE guideline on ME/CFS (December) and post-mortem research (February). Trustees considered various options for future questions. The February survey will be allow people to comment on how satisffied they are with the NHS management of their ME/CFS. Results from current and past on-line surveys can be found on the MEA website.

It was agreed to update the section on alternative and complementary therapies.

ME CONNECT

Trustees discussed whether ME Connect Helpline could also be linked in to NHS services and given publicity by the ME/CFS clinics.

ME ESSENTIAL MAGAZINE

TB reported on the content of the February issue of ME Essential. This will be sent out to members towards the end of the month. It was agreed to produce a survey form for people to comment on the content of the magazine – in particular the not always easy task of achieving the right balance between serious news and medical information and ‘lighter’ human interest features.

DATE OF NEXT MEETING

Provisionally fixed for Tuesday 17 March 2009

Summary prepared by Dr Charles Shepherd
MEA trustee

ADDENDUM

Further information on new MEA funded research into muscle energy metabolism:

Professor Julia Newton and colleagues at the University of Newcastle have been investigating the role of autonomic system dysfunction in ME/CFS and several papers from her research group relating to these findings have now been published. Professor Newton has also been looking at possible explanations for the sometimes quite disabling fatigue that is reported by people with primary biliary cirrhosis. The main emphasis of the new study being funded by the ME Association’s Ramsay Research Fund will be to look at whether there is a peripheral (ie muscular) component to exercise-induced fatigue in ME/CFS by examining how skeletal muscle produces lactic acid during exercise and then removes the acid during the recovery phase. The proposed study will take forward findings from small studies that have already examined this aspect of muscle function. Some of these studies indicate that there is a defect in muscle energy metabolism/production, possibly due to mitochondrial dysfunction, that cannot be explained by the deconditioning/inactivity model – at least in a sub-group of people with ME/CFS.

MEA website

ENDS

Posted in APPG on ME, CFS Clinics, CFS Clinics Inquiry, Countess of Mar, Invest in ME, Judicial Review, ME Association, ME events, ME in Parliament, ME Observatory, MRC, NHS service provision inquiry, NICE, NICE CFS/ME guideline, NICE Judicial Review, Royal Society of Medicine. Comments Off

Funeral arrangements for Lynn Gilderdale

January 26, 2009 — meagenda

Postings on ME agenda site for media coverage of the death of Lynn Gilderdale are identified by the Freefoto.com image above and are archived in Categories under Gilderdale Case

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Funeral arrangements for Lynn Gilderdale who died in December, last year, have been announced today by the ME Association and the 25% M.E. Group

From the ME Association News Page | Monday, 26 January 2009

Funeral arrangements for Lynn Gilderdale

The funeral service for Lynn Gilderdale, who died in December, will be held at St Peter’s Church, Station Road, Stonegate, East Sussex TN5 7EB, on Friday, February 6, at 10.45pm. The family say that those wishing to pay their respects to Lynn will be very welcome.

Immediately after the service, there will be a gathering at Dale Hill Hotel, Ticehurst, East Sussex TN5 7DQ.

Close family will be going to the Crematorium after the service but will at the hotel between 1.15 and 1.30pm.

The family request family flowers only and that those who wish to make a donation to ME research may do so as follows:

Cheques payable to: Glasgow Caledonian University

Please write a/c 10103/M4057 on the back of the cheque.

Send to:

C Waterhouse Funeral Directors
High St.
Burwash
East Sussex
TN19 7ET

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Lynn Gilderdale Tribute website

http://lynngilderdale.net/

Please read the Lynn Gilderdale Tribute website Disclaimer at:

http://www.lynngilderdale.net/disclaimer.html

Please note that Suzy Chapman, owner of ME agenda site and Read ME UK Events site has no connection or involvement with the Lynn Gilderdale Tribute website. All enquiries about the Lynn Gilderdale Tribute website or the content of the site should be referred directly to the Lynn Gilderdale Tribute site webmaster.

Posted in CBT, CBT/GET, Gilderdale case, Judicial Review, ME in the media, NICE, NICE CFS/ME guideline, NICE Judicial Review, WHO (World Health Organization). Comments Off

Response to Great Yarmouth and Waveney Joint Health Scrutiny Committee document

January 24, 2009 — meagenda

Response to Great Yarmouth and Waveney Joint Health Scrutiny Committee document:
Statement on behalf of Suffolk Youth and Parent Support Group

In the previous posting at:

http://meagenda.wordpress.com/2009/01/24/great-yarmouth-and-waveney-joint-health-scrutiny-committee-16-january-09/

I posted a PDF and an html version of the document

Great Yarmouth and Waveney Joint Health Scrutiny Committee

16 January 2009

Item no. 6 Norfolk and Suffolk CFS/ME Services:

Suggested approach from Keith Cogdell, Scrutiny Support Manager

It has been drawn to my attention that patients STRONGLY OBJECTED to the suggested approach from Keith Cogdell, Scrutiny Support Manager. A detailed statement provided by Barbara Robinson, on behalf of Suffolk Youth and Parent Support Group, dated 24/01/09 can be accessed here:

PDF Statement by Suffolk Youth and Parent Support Group

Posted in 25% ME Group, CBT/GET, CFS Clinics, CFS Clinics Inquiry, ME in children, NHS service provision inquiry, NICE, NICE CFS/ME guideline, NICE Judicial Review. Comments Off

Great Yarmouth and Waveney Joint Health Scrutiny Committee: 16 January 09

January 24, 2009 — meagenda

On 23 January, the ME Association published a notice announcing the launch of a new website and online patient survey for people with ME/CFS in Norfolk and Suffolk. The announcement can be read here on the ME Association’s newspage or here on ME agenda. The new website is here

“The Norfolk and Suffolk ME/CFS Service Development Group was set up at a meeting chaired by the Great Yarmouth and Waveney Primary Care Trust in August 2007. There are patient representatives on it for each of the following: Norfolk, Suffolk, Great Yarmouth and Waveney, the severely affected, and children and young people.

“The patient survey is supported by Beccles and District ME/CFS Support Group, Suffolk Youth and Parent Support Group, local members of the 25% ME Group, ME Drop In Support Group Great Yarmouth, and West Norfolk ME Support Group.”

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Co-incidently, while searching for other material, yesterday, I found the following document at:

http://www.norfolk.gov.uk/consumption/groups/public/documents/committee_report/healthscrut160109item6pdf.pdf

Great Yarmouth and Waveney Joint Health Scrutiny Committee

16 January 2009

Item no. 6 Norfolk and Suffolk CFS/ME Services

Suggested approach from Keith Cogdell, Scrutiny Support Manager

Update: It has been drawn to my attention that patients STRONGLY OBJECTED to the suggested approach from Keith Cogdell, Scrutiny Support Manager. A detailed statement from Barbara Robinson, on behalf of Suffolk Youth and Parent Support Group, dated 24/01/09 can be accessed here:

PDF Statement by Suffolk Youth and Parent Support Group

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The Great Yarmouth and Waveney Joint Health Scrutiny Committee document is a 14 page PDF document which includes 2 appendices. I have reproduced this document in text format with the chart and also included a copy of the PDF file [189 KB].

Caveat:

I am not a resident of the PCT area covered by this document and I have no connection with the Norfolk and Suffolk ME/CFS Service Development Group, its website or survey. I am posting this document in full as a matter of interest to the wider ME community. The document is dated 16 January 2009. I am unable to confirm whether the document has been superseded by more recent documents.

In order to ascertain how this document relates to the objectives of the Norfolk and Suffolk ME/CFS Service Development Group and its survey please consult the group’s Patient Representatives. Care has been taken in the conversion of this document to html format. If quoting from or forwarding this document, please rely on the original document in PDF format as no responsibility can be accepted for any errors or ommissions.

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Click link below to open document in PDF format. The text version is appended.

Great Yarmouth and Waveney Health Scrutiny Committee 16 January 2009

[Related document: GREAT YARMOUTH AND WAVENEY JOINT HEALTH SCRUTINY COMMITTEE
MINUTES OF THE MEETING HELD ON 22 OCTOBER 2008 at: http://www.norfolk.gov.uk/consumption/groups/public/documents/minutes/healthscrut221008minspdf.pdf ]

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Text version of PDF document

Great Yarmouth and Waveney Joint Health Scrutiny Committee

16 January 2009

Item no. 6

Norfolk and Suffolk CFS/ME Services

Suggested approach from Keith Cogdell, Scrutiny Support Manager

1.Background

1.1 The issue of services for people with CFS/ME was referred to the Joint Committee by the Suffolk Health Scrutiny Committee in March 2008. Reports to the of the [sic] Joint Committee on 12 August highlighted past and current concerns of patient and carer groups about the level and nature of service provision, and clarified the arrangements for service commissioning and delivery.

1.2 The Joint Committee decided to focus its attention on work being undertaken by NHS Great Yarmouth and Waveney to revise the service specification, and how this fitted with the guidelines issued by the National Institute for Health and Clinical Excellence (NICE).

1.3 A report to the Committee on 22 October from the Chief Executive of NHS Great Yarmouth and Waveney described the approach being taken by the PCT in reviewing the service specification and linking this work to the NICE guidelines. The report also highlighted a delay in completing this work in respect of a key element of the NICE guidelines on ‘Treatment and Management’, and how this would be managed in respect of meeting deadlines for tendering for the services by April 2009.

1.4 The Chief Executive made a commitment that there would be no change to current services until the revised service specification and the tendering process with the new provider are completed.

1.5 The Committee agreed that a special meeting should be arranged to discuss the revised service specification. However, as can be seen from the annexed reports from NHS Great Yarmouth and Waveney and the Norfolk Local Involvement Network, work is continuing on this and the next meeting of the Service Design Project group has been scheduled for 9 January. Members will also have noted that the current service specification will continue to be used until the service re-design work has been completed and the revised specification has been agreed by the Trust’s Board.

Suggested action

2.1 Given that it is not possible to pursue the original intention of today’s meeting, it is suggested that Members:

• Consider and comment on the contents of the annexed reports
• Request a verbal update on progress made at the last Service Design Project Group meeting from NHS Great Yarmouth and Waveney and the Norfolk Local Involvement Network
• Agree to revisit this subject when the revised service specification has been drawn up and before it is finally agreed by the Trust’s Board

[Logo] NHS Great Yarmouth and Waveney

CFS/ME Service Re-Design Briefing Note

8th December 2008

At the Great Yarmouth and Waveney Joint Health Scrutiny Committee meeting on 22nd October 2008, it was agreed that patient representatives would submit the final consensus view documents regarding a proposed service model by 31st October 2008. This was later extended to Monday 3rd November 2008. On this date, a consensus document was submitted for the following section:

• Treatment and management.

This document has been reviewed and an early draft service specification has been prepared, which considers the views of patient representative members of the SDPG.

Work continues on the draft service specification. However, the next step is to reconvene a meeting of the SDPG to discuss this further. As the purpose of this meeting is to agree the draft service specification, it is important that all members of the group (both patient representatives and commissioners) are able to attend. Unfortunately it has proven difficult to identify a date prior to Christmas which is suitable for all attendees, and therefore the meeting will need to take place early in the New Year.

As members of the SDPG will be aware, NHS Great Yarmouth is required to formally establish its Provider Arm as an Arms-Length Trading Organisation (ALTO) by 1st April 2009 and will be tendering services provided by the Provider Arm. The services to be tendered include the CFS/ME Service. However, in recognition of the service re-design work underway with patient representatives and commissioners from other PCTs, together with the impending judicial review in February, it has been agreed that in the interim, the tender document will include the current service specification – this will ensure the continuation of a service in the interim, while NHS Great Yarmouth and Waveney commissioners continue to work with other commissioners, and patient representatives through the SDPG to develop a robust service specification.

Norfolk and Suffolk ME/CFS Service

Report by the Manager of Norfolk Local Involvement Network (LINk)

At the time of writing this report (6 January 2009), the new Service Specification has not been seen by Patient representatives or Norfolk LINk members (requests have been made). A meeting has been arranged for the 9th January to discuss the service model, Patient representatives, Commissioners and Norfolk LINk members have been invited to this meeting.

Update since 22nd October 2008 Joint Health Scrutiny Committee meeting.

Members of the Norfolk LINk have met with NHS Gt Yarmouth and Waveney representatives’ Mr Michael Stonard (Chief Executive), Mr James Elliott (Commissioning Director) and Mr Alistair Lipp (Public Health Director), as recommended by the Gt. Yarmouth and Waveney Joint Health Scrutiny Committee. During the meeting it was stated that the Provider Arm of the PCT was struggling with staff shortages to provide an adequate service, and that discussions with commissioners at NHS Norfolk and Suffolk PCT were going to be held. The suggestion made by Mr. Stonard was to possibly approach Peterborough to provide an arms length service. Norfolk LINk has not been updated on the outcome of these discussions.

An email request for information has also been sent to the Provider Arm currently providing the ME/CFS service for information about the service their provide and at the time of writing this report a response has not been received. (The 20 working days deadline for requests for information is due on the 8 January due to bank holidays)

Patient representatives, in consultation with their groups, have completed and returned to NHS Gt. Yarmouth and Waveney the Treatment and Management section of the specification within 3 days of the deadline date 31st October 2008, in agreement with NHS GT Yarmouth and Waveney.

Further to Norfolk LINk discussions with NHS Gt. Yarmouth and Waveney, MP’s Norman Lamb and Dr. Ian Gibson have met with a representative of NHS Norfolk and have requested a public meeting to be held to discuss the future of ME/CFS services in Norfolk.

I have also been in discussions with this representative of NHS Norfolk and informed him of the Joint Health Scrutiny Committee’s meeting on this subject.

NHS Modernising agency – Good care planning for people with long term conditions

Every PCT is committed to achieving the maximum health improvement through prevention and other interventions ensuring that the primary care element of the targets of national service frameworks are met and comply with quality requirements which also specify tertiary or secondary services. The National Service Framework (NSF) Long Term Neurological Conditions (LTNC) is specified with regard to children and young people. Patients and Carers recognise that NHS Gt. Yarmouth and Waveney’s Board has chosen to provide all services under the NICE Guidelines. However, given that the guidelines for ME/CFS are under judicial review and the Trust is required to meet targets within the NSF, patients and carers are asking for the Trust to reconsider its decision and to consider the Long Term Neurological Conditions National Service Framework, as populated by the Peninsula School of Medicine. Patients are also requesting that the Trust considers an experienced consultant level (triage) and separate pathways for ME and CFS as they hold separate World Health Organisation (WHO) Identification Codes.

NSF Standard 7 – provision of appropriate specialist care
This standard demonstrated in a Best Practice Pathway demonstrates that access to a specialist CFS/ME team for advice should be available and that the team is multi-disciplinary and consists of a specialist consultant, specialist nurse, physiotherapist, occupational therapist (OT), dietician, counsellor, social worker, and links to other services.

The Specification for future services
Nationally, service users and carers are asking for a specialist consultant level Biomedical service to be instated and locally (see appendix 1) are requesting the new service specification to be led by a Biomedical Specialist in line with the National Service Framework (see appendix 2 NSF as applied by Peninsula Medical School). There is ever-increasing biomedical evidence to support an argument for this model both nationally and locally as can be seen by patient survey results; this model is that put forward by Dr Mitchell to the Department of Health in 2004 for a share of the £8.5 million investment in ME/CFS services based on the 2001 care pathway as outline by Mr. Mike Stonard at the 22nd October 2008 OSC meeting – “a care pathway had been introduced in 2001 and would continue in place until any change could be agreed with the patient groups”. There is also overwhelming evidence through patient surveys nationally that Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT), treatments recommended by NICE, have only worked for 5% of patients surveyed. For the rest of the patients surveyed, these treatments have either made no difference or have worsened the patients condition.

Current services concerns
Patients and Carers are very concerned that the current inadequate service will continue to remain in place due to the delays, as recent meetings have been cancelled by NHS GT Yarmouth and Waveney in the development of the new Service Specification.

By NHS Gt. Yarmouth and Waveney’s own admission, “there are staff shortages vacancies which cannot be filled”. This is further compounded by the failure by commissioners to authorise replacement lead consultant posts. The current service is and has been for a long period of time, inadequate leaving patients undiagnosed, unmanaged and waiting to be seen longer than the government waiting targets. Patients, carers and their families would like to see immediate action.

[Logo] Suffolk Single Gateway [Logo] Suffolk Youth and Parent Support Group

Appendix 1

Introduction

When the SDPG was set up it was emphasised that we are designing a service to meet local needs. With this in mind patient groups have carried out 2 surveys over the last 6 months gathering information from a total of 76 people with ME in Norfolk and Suffolk. In addition we have included information regarding NHS provision for children and young people

Patient Evidence A consists of 55 respondents and includes all patient groups from mildly to very severely affected.

Patient Evidence B comprises 21 respondents and was carried out in partnership with the 25% Group. This concentrated on the needs and experiences of those severely affected by ME.

Patient Evidence C comprises of information relating to children, young people and their carers from Cambridgeshire and Norfolk.

Patient Evidence A

An analysis of the information has been split into 3 sections:

Background information, age, sex, severity of illness etc
What the ME Service should provide
Number and severity of symptoms

Background Information

1. On average people who responded have been ill for 11 years

2. The average age is 51, the youngest respondent is 15, and the oldest 80

3. 4 respondents are very severely affected, 24 severely affected, 23 moderately affected and 3 mildly affected

4. The average number of months waiting to be seen at the clinic is 5.3, the shortest time being 1 month and the longest 18 months

5. The most common precipitating factor is a combination of infection/trauma and trying to continue to work. This was the case for over half (51%) of respondents. This is an area where GP education could be very effectively targeted

6. A significant proportion, 30%, has not been referred to the ME Service at all, and for some of those that have been referred it has taken months if not years to persuade their GP. This ties in with the fact that 25% do not have a supportive GP.

7. Dr Mitchell saw 46% of patients, Dr Gherkin 22%, GPwSI 22%, and OT’s 11%. There have been some negative comments regarding GPwSI.

What should the ME Service Provide

1. 3 respondents answered ‘yes’ to every question and 5 respondents answered ‘yes’ to every question bar one.

2. 80% to 100% wanted the following:

ongoing support for their ME symptoms, advice on symptom management, monitoring of symptoms and medication and medical confirmation of symptoms and disability
a biomedical consultant
advice on pacing, an appropriate information pack
silent area/waiting room, home visits by consultant where necessary, consultant level monitoring of ongoing research with feedback to patients, opportunity to participate in research
blood tests, neurological tests, physical tests and a prescribing service.
mobility advice and advice on aids and equipment
ongoing support for secondary infections/diseases

Our evidence demonstrates that ME affects people for a long period of time and patients want ongoing support and monitoring provided by a biomedical service. It is likely that people want a prescribing service as they do not feel adequately supported by their GP. Medical confirmation of symptoms and disability is vital for people who are disabled by ME but have difficulty dealing with employers, insurers and claiming benefits.

3. The other results were less clear cut. 76% want counselling but only 33% a psychiatrist. People do not see themselves as having mental health problems but recognise counselling as a useful tool to assist in adjusting to chronic illness. There is a roughly even split between those who do and don’t want CBT. 64% felt 8 weeks is an acceptable waiting time as long as the patient is referred quickly by the GP in the first place.

GET is the least popular intervention with 69% not wanting it.

Symptoms

1. Not every respondent recorded every symptom, and every respondent has multiple symptoms.

2. The most severe symptoms are post exertional fatigue, long recovery period from exertion, fatigue, sleep disturbance and pain. These are the areas where intervention should be targeted. Medication for sleep disturbance and pain needs to be considered.

3. 100% of respondents are affected by fatigue, sleep disturbance, pain, sensitivities to light/noise, odours, memory disturbance and cognitive difficulties. Recording consultations and an information pack are a practical way that problems with cognition and memory can be ameliorated at clinic.

4. 90 to 100% are affected by post exertional fatigue, long recovery period after exertion, erratic body temperature, muscle weakness, and emotional lability.

5. 80 to 90% are affected by hot flushes, dizziness and weakness on standing, gastrointestinal difficulties, breathless with exertion, tender lymph nodes and recurrent flu like symptoms. Dietetic and nutritional advice is an area worth exploring. Difficulties in preparing meals and gastrointestinal problems can result in poorly nourished patients and so impede improvement. Medication for nausea can be helpful.

6. Overall the whole ‘package’ of symptoms has a significant affect on patients functioning and quality of life.

Patient Evidence B

This evidence relates to the severely affected and again has been split into 3 sections:

Support received by patients
What should the ME Service be offering for those who are severely affected
An analysis of symptoms

Support received by patients Nearly half, 48% receive no support at all from either their GP or the ME Service. 33% either have received or are in receipt of support from the ME Service. 29% receive support from GP’s and 10% from social services etc. Some have received support from both GP and the ME Service which is why the total percentage is in excess of 100. Accessing services for people with severe ME is extremely difficult because of their physical limitation and disability and the special needs that they have, which are rarely provided for, such as a quiet room or a place to lie down.

What should a ME Service be providing for the Severely Affected?

The results are very similar to the information gathered from Patient Evidence A.

1. 100% want a biomedical service, neurological and blood tests, symptom management, ongoing support for secondary infections and diseases, and medical confirmation of symptoms and disability.

2. 90 to 100% want physical tests, opportunity to participate in research, home visits/assessment by the consultant, short waiting time, silent waiting room, consultant level monitoring of ongoing research with feedback to patients, and an information pack.

3. 75 to 90% want a biomedical consultant, prescribing service, wheelchair and mobility advice, advice on pacing.

4. As with Patient Evidence A there is a recognition that help may be needed adjusting to chronic illness and 61% wanted counselling.

5. None of the respondents want a biopsychosocial service. 95% don’t want a psychiatrist, 90% don’t want GET, and 72% don’t want CBT. Evidence from patients demonstrates that both GET and CBT to be inappropriate and harmful.

Analysis of Symptoms

1. The smallest number of symptoms experienced per sufferer is 12 and the maximum number of symptoms experienced is 37, the average number of symptoms experienced is 25.

2. The most severe symptoms are general malaise, post exertional fatigue, and loss of thermostatic stability

3. 80 – 90% experience head pain, bladder dysfunction, numbness, visual and perceptual disturbances, nausea and vomiting

4. 70 – 80% experience sore throat, flu like symptoms, heat/cold intolerance, extreme pallor, worsening of symptoms with stress and slow recovery and pain

Patient Evidence C

This patient evidence was collected from children, young people and their carers in Norfolk and Cambridgeshire. The evidence was presented to Dr David Vickers, who is Director of Specialist Children’s Services, South Cambridgeshire PCT, and was on the NICE Working Group. The information was used to inform the development of children’s services in Cambridgeshire.

Service Provision

1. GP Service

a. As with adult services it is entirely a matter of chance as to whether an understanding GP is involved in the care of the child. Frequent examples of families changing GP practice in order to find someone sympathetic.
b. GP’s appear to be out of their depth in dealing with complex cases.
c. Lots of examples of disbelief, sarcasm, accusations of neurotic mothers.

2. Community Paediatric Service

a. Usually referred because of the need for out of school teaching rather than the CPS having any particular specialist knowledge of ME.
b. Knowledge and understanding very patchy resulting in overambitious expectations by HCP’s.
c. Lack of continuity of care and regular review appointments
d. Some paediatricians willing to do home visits which was welcomed

3. Mental Health Services

a. Arrogance verging on abusive, lack of understanding and knowledge among HCP’s
b. CBT did not result in recovery, though counselling did help children adjust
c. Too willing to diagnose depression and where present depression was as a result of the way children have been treated by Teachers and HCP’s rather than as a result of the effects of ME

Overview of NHS Services

1. Doctors generally very patronising and parents do not feel listened to.
2. Paediatricians not found to be very good at talking to or relating to children
3. Lack of provision of written information for children and parents to refer to
4. Lack of appropriate management early on leads to deterioration
5. Lack of parental involvement and choice, referrals to other HCP’s without consent
6. Lack of co-ordination and communication between HCP’s
7. CMO’s Report published in 2002 does not appear to have made any difference to the experience of service users

NHS and LEA
1. No evidence of joined up working, some described the situation in Cambridgeshire as ‘appalling’.
2. Situation somewhat better in Norfolk where long term provision for children is recognised and provided
3. Many children put under pressure to return to school when unfit, and inappropriate demands of schools thought to do a great deal of damage to children

Suggested Improvements

1. Education of doctors and other HCP’s so they are up to date with research into ME and management and treatment of the illness.
2. Education of LEA’s so that children are not pressured to do longer hours at school, return to school before they are ready, and easy access to home tutoring.
3. Willingness to listen to parents and children’s experiences, and to take into account the sometimes profound functional disability and disruption to family life as a result of ME.
4. HCP’s should communicate effectively and agree an individualised management strategy for each child.
5. A genuine choice of management approaches should be available as with other illnesses.
6. There is a need for domiciliary and acute services.
7. ME is a chronic illness. Long term support is vital.
8. It is more important that HCP’s knowledgeable in the field of ME are provided than a specialist children’s service per se. One respondent commented that she would rather her child saw a specialist in ME than a paediatrician with little, no or inappropriate knowledge in the field.

Conclusion

As our surveys have shown, ME sufferers in Norfolk and Suffolk want the ME Service toi: Honour the fact that ME is a serious neurological disease (WHO ICD 10. G93).

Acknowledge that ‘Myalgic Encephalomyelitis’ is a World Health Organisation (WHO: ICD 10 – G93.3) defined neurological disease and is not the same condition as ‘idiopathic chronic fatigue’ described separately by the WHO at ICD -10-F.48
Use an appropriate biomedical definition that takes account of the above and accords with international research evidence, expertise and proper WHO illness category demarcation.
Actively educate other clinicians, paramedical staff and social and child-education services regarding the true physical nature and impact of this disease.
Use the primary WHO-listed name “Myalgic Encephalomyelitis”, as opposed to “CFS, Chronic Fatigue or Encephalopathy” (Hooper 2007)

Respect the fact that ME is a multi-system disease affecting all systems of the body:

Acknowledge that biopsychosocial CBT/GET treatments are deemed inappropriate at best and contra-indicated at worst by leading international specialists and consensus diagnostic and treatment protocols ii iii
Be particularly aware of the severity of severe ME symptoms and the high level of post exertional malaise and post- exertional fatigue experience and accommodate it; so that patients can be seen and given proper ongoing support.

Validate the ME sufferer’s experience through adequate biomedical testing:

Provide a biomedical clinician who can recognise the symptoms of real ME, their impact, and make appropriate recommendations, based on current physical research and state-of the-art practice.
Offer appropriate biomedical tests and scans that prove that the severe ME sufferer has a physical illness and illuminates what is going wrong in their body.
Provide appropriate state-of the-art biomedical assessment that will provide a medically-informed and scientifically objective report about the illness and disability.
Give patients the opportunity to choose to participate in physical research, especially the severely affected that have in the past been excluded and/or underrepresented in research projects. It is hoped that this will promote better patient outcomes and disease prevention.

Treat the symptoms as much as possible:

Explore, prioritise and validate the neurological symptoms of ME.
Provide home visits from a biomedical clinician for those not well enough to travel.
Have the willingness and funding to prescribe drug and nutritional interventions for illness management (e.g. pain relief and sleep promotion) and, where possible, for better prognosis (e.g. appropriate antiviral treatments).
Acknowledge that all other treatments/therapies should be agreed with the input and agreement of the ME specialists as principal advisors – due to their understanding of possible adverse reactions, complications etc. This particularly applies if there are also mental health/conditions/complications.

Competently provide support:

Acknowledge the genuine severe disability so that support can be given to sufferers to claim benefits and grants etc, to enable true entitlement.
Offer advice based on awareness of safe practice and safe treatments regarding how to deal with other medical conditions and illnesses that might arise.
Provide access by phone for specific symptom management/ backup.

Appendix 2

Illustration: NSF for Long-Term Conditions – as applied to CFS/ME As taken from page 24 of the Peninsula Medical School – Service Investment Programme Report 2004-2006.

Quality requirement 1: A person-centred service
People with CFS/ME are offered integrated assessment and planning of their health and social care needs. They are to have the information they need to make informed decisions about their care and treatment and, where appropriate, to support them to manage their condition themselves.

Quality requirement 2: Early recognition, prompt diagnosis and treatment
People suspected of having CFS/ME are to have prompt access to specialist expertise for an accurate diagnosis and treatment as close to home as possible.

Quality requirement 3: Emergency and acute management
People with CFS/ME needing hospital admission for this or other health needs are to be assessed and treated in a timely manner by teams with the appropriate skills and facilities, seeking specialist advice regarding their CFS/ME, if needed.

Quality requirement 4: Early and specialist rehabilitation
People with CFS/ME who would benefit from rehabilitation are to receive timely, ongoing, high quality rehabilitation services in hospital or other specialist setting to meet their continuing and changing needs. When ready, they are to receive the help they need to return home for ongoing community rehabilitation and support.

Quality requirement 5: Community rehabilitation and support
People with CFS/ME living at home are to have ongoing access to a comprehensive range of rehabilitation, advice and support to meet their continuing and changing needs, increase their independence and autonomy and help them to live as they wish.

Quality requirement 6: Vocational rehabilitation
People with CFS/ME are to have access to appropriate vocational assessment, rehabilitation and ongoing support to enable them to find, regain or remain in work and access other occupational and educational opportunities.

Quality requirement 7: Providing equipment and accommodation
People with CFS/ME are to receive timely, appropriate assistive technology/equipment and adaptations to accommodation to support them to live independently; help them with their care; maintain their health and improve their quality of life.

Quality requirement 8: Providing personal care and support
Health and social care services work together to provide care and support to enable people with CFS/ME to achieve maximum choice about living independently at home.

Quality requirement 9: Palliative care
People with very severe CFS/ME are to receive appropriate services when they need them to control symptoms, offer pain relief and meet their needs for personal, social, psychological and spiritual support, in line with the principles of palliative care.

Quality requirement 10: Supporting family and carers
Carers of people with CFS/ME are to have access to appropriate support and services that recognise their needs both in their role as carer and in their own right.

Quality requirement 11: Caring for people CFS/ME in hospital or other health and social care settings
People with CFS/ME are to have their specific needs met while receiving care for other reasons in any health or social care setting.

Full document in PDF format

Great Yarmouth and Waveney Health Scrutiny Committee 16 January 2009

Posted in 25% ME Group, CBT/GET, CFS Clinics, CFS Clinics Inquiry, NHS service provision inquiry, NICE, NICE CFS/ME guideline, NICE Judicial Review. Comments Off

Countdown: Judicial Review NICE CFS/ME Guideline

January 23, 2009 — meagenda

Image | bortescristian | Creative Commons

High Court Hearing Countdown

Judicial Review NICE Guideline for CFS/ME

Where? | Room 76, Royal Courts of Justice, The Strand, London WC2A 2LL

East Block location maps | http://www.nicemecourt.co.uk

When? | 11th and 12th February 2009

Why? | http://www.meactionuk.org.uk/nicejr.htm

What else do I need to know? | http://www.nicemecourt.co.uk

Whom do I contact? | contact@nicemecourt.co.uk

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The NICE M.E. Guidelines Judicial Review new YouTube video

“Annette Barclay talks about the impending legal challenge to the NICE guidelines on M.E.”

8.17 mins | GBCOne

ME agenda site has no connection with any legal case involved in the NICE Judicial Review or with the unofficial supporters’ website. All enquiries about the Judicial Review, including media enquiries, should be directed to Leigh Day & Co or to the High Court, as appropriate. Members of the ME community planning to attend the hearing or who are able to offer assistance should direct enquiries about arrangements for what is currently scheduled for a two day hearing to the web master of the NICE JR Supporters’ website

Posted in CBT, CBT/GET, CFS Clinics, FINE Trial, NICE, NICE CFS/ME guideline, NICE Judicial Review, PACE Trials, Prof Hooper, Professor Peter White, Simon Wessely, WHO (World Health Organization). Comments Off

The use of practice nurses in the management of ME/CFS

January 23, 2009 — meagenda

[Ed: I have appended copies of the provisional Abstract and full paper in PDF format.]

“[Includes] link to full paper, which contains some very depressing quotes on how some nurses view ME/CFS and the patients who have it.” Dr Charles Shepherd, MEA

From the ME Association News page | 23 January 2009

The use of practice nurses in the management of ME/CFS

Barriers to the use of practice nurses in the delivery of effective management strategies for the care of people with ME/CFS have been identified in a study published today by

BMC Nursing, an open-access journal publishing original peer-reviewed articles on all aspects of nursing.

A total of 29 practice nurses were interviewed for the study led by Dr Carolyn Chew-Graham, senior lecturer in primary care at Manchester University’s School of Community-based Studies.

In the provisional abstract carried on BMC Nursing, the six authors say:

“Practice nurses had limited understanding about CFS/ME which had been largely gained through contact with patients, friends, personal experiences and the media rather than formal training. They had difficulty seeing CFS/ME as a long term condition.

“They did identify a potential role they could have in management of CFS/ME but devalued their own skills in psychological intervention, and suggested counselling as an appropriate therapeutic option. They recognised a need for further training and on going supervision from both medical and psychological colleagues.

“Some viewed the condition as contentious and held pejorative views about CFS/ME. Such scepticism and negative attitudes will be a significant barrier to the management of patients with CFS/ME in primary care.”

And, among their conclusions, they say:

“Training must begin by addressing negative attitudes to patients with CFS/ME.”

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Open access

http://www.biomedcentral.com/1472-6955/8/2/abstract

BMC Nursing
Volume 8

Viewing options:
Abstract (Provisional)

PDF (192KB) (Provisional)

Research article

Practice Nurses’ views of their role in the management of Chronic Fatigue Syndrome/Myalagic Encephalitis: a qualitative study

Carolyn A Chew-Graham , Rebecca Dixon , Jonathan W Shaw , Nina Smyth , Karina Lovell and Sarah Peters
BMC Nursing 2009, 8:2doi:10.1186/1472-6955-8-2

Published: 22 January 2009

Abstract (provisional)

Background

NICE guidelines suggest that patients with Chronic Fatigue Syndrome/Myalgic Encephalitis (CFS/ME) should be managed in Primary Care. Practice Nurses are increasingly being involved in the management of long-term conditions, so are likely to also have a growing role in managing CFS/ME. However their attitudes to, and experiences of patients with CFS/ME and its management must be explored to understand what barriers may exist in developing their role for this group of patients. The aim of this study was to explore Practice Nurses’ understanding and beliefs about CFS/ME and its management.

Methods

Semi-structured interviews with 29 Practice Nurses. Interviews were transcribed verbatim and an iterative approach used to develop themes from the dataset.

Results

Practice nurses had limited understanding about CFS/ME which had been largely gained through contact with patients, friends, personal experiences and the media rather than formal training. They had difficulty seeing CFS/ME as a long term condition. They did identify a potential role they could have in management of CFS/ME but devalued their own skills in psychological intervention, and suggested counselling as an appropriate therapeutic option. They recognised a need for further training and on going supervision from both medical and psychological colleagues. Some viewed the condition as contentious and held pejorative views about CFS/ME. Such scepticism and negative attitudes will be a significant barrier to the management of patients with CFS/ME in primary care.

Conclusions

The current role of Practice Nurses in the ongoing management of patients with CFS/ME is limited. Practice Nurses have little understanding of the evidence-base for treatment of CFS/ME, particularly psychological therapies, describing management options in terms of advice giving, self-help or counselling. Practice Nurses largely welcomed the potential development of their role in this area, but identified barriers and training needs which must be addressed to enable them to feel confident managing of patients with this condition. Training must begin by addressing negative attitudes to patients with CFS/ME.

The complete article is available as a provisional PDF. The fully formatted PDF and HTML versions are in production.

Click link to open PDF of full paper

The use of practice nurses in management of CFS/ME

Practice Nurses’ views of their role in the management of Chronic Fatigue Syndrome/Myalagic Encephalitis: a qualitative study

Posted in CBT, CBT/GET, CFS Clinics, CFS Clinics Inquiry, ME Association, NHS service provision inquiry, NICE, NICE CFS/ME guideline, NICE Judicial Review. Comments Off

European Court rules on accrual of annual leave for the long-term sick

January 23, 2009 — meagenda

ME Association News page | 23 January 2009

European Court rules on accrual of annual leave for the long-term sick

The European Court of Justice has ruled that workers who are off sick for the whole of an annual leave year are entitled to a period of four weeks paid annual leave despite the fact they they are not actually at work. National courts can decide whether the leave is taken during that year or carried over to the following year – but, either way, the employee is entitled to be paid at some point.

And the court has ruled that the right to paid annual leave is not lost at the end of a leave year if the worker was off sick for the whole of that year, or if he or she was off sick for part of the year and is still absent when the employment terminates.

The European Court has handed down judgement in the case of Stringer v HMRC – overturning a decision of the British Court of Appeal who in April 2005 ruled that the right to paid holiday did not accrue during periods of sickness absence. This judgement was appealed to the House of Lords, who referred the case to the European Court.

Richard Woodman, an employment specialist at Royds Solicitors, with whom the ME Association works on private health insurance disputes, said:

“The House of of Lords will now give a final judgement but will no doubt overturn the Court of Appeal’s judgement in the light of the ECJ decision.

“This will be a most unpopular decision with employers, because in essence it means that there is a right to accrue annual leave for those on long term sick for an unlimited period of time if they are ill for a number of years.”

Posted in Employment legislation, ME Association. Comments Off

Next meeting of the APPG on ME

January 23, 2009 — meagenda

Compiled by Suzy Chapman | 23 January 2009

Next meeting of the APPG on ME

The last meeting of the All Party Parliamentary Group on ME took place on 8 October. The Minutes of that meeting can be read here

The next meeting had been scheduled for December, subject to availability of a speaker.

It had been proposed by Ms Diane Newman (The M.E. Society, formerly Peterborough ME and CFS Self-Help Group) that a representative of the Mental Health Alliance should be invited to attend the APPG to discuss how new Mental Health legislation will affect people with ME and how it is being implemented. It is understood that the secretariat had been waiting on Ms Newman to suggest potential speakers.

Since the issue of speakers from the area of Mental Health remained unresolved, the December meeting was postponed. The focus of the next meeting appears to have shifted away from new Mental Health legislation and an alternative speaker is now being sought.

I am advised that Jonathan Shaw MP, new Minister for Disabled People at the DWP, has been invited to attend a meeting proposed for February.

The Minister has been offered dates in early February, that is, prior to the NICE Judicial Review on 11th and 12th and the Parliamentary Half Term Recess (12th to 23rd February) but has also been offered alternative dates towards the end of the month.

So the date of the next meeting has still not been finalised – which is unfortunate as some regular attendees of APPG meetings will be planning to also attend one or both of the scheduled Court hearings for the NICE Judicial Review and some are going to need to book travel and escort arrangements for both these events.

As soon as a date had been firmed up and the agenda available, I will publish a copy here.

Tony Britton, Press and PR for the ME Association, has stepped down from his role as minute taker, a duty alternating between himself and Action for ME’s Heather Walker. It is not known whether the MEA intends to furnish a replacement for Mr Britton or whether the drawing up of agendas and the taking of minutes will be undertaken at future meetings only by a representative for Action for ME.

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Proposed APPG inquiry into NHS service provision

With no meeting of the APPG scheduled until February (possible even later, depending on availability of a speaker) this means that there will have been no opportunity to discuss publicly the proposed APPG inquiry into NHS service provision for people with ME/CFS for well over four months.

We were given to understand that some form of patient questionnaire was to be issued before Christmas as part of a call for Written Submissions. This questionnaire has not materialised and no call for Written Submissions, deadlines for submissions or dates for Oral Hearings have been issued, either.

A revised and agreed Terms of Reference has not been published and no announcement has been made setting out the position on source(s) of funding for this project or whether an administrator for the project and admin resources have been secured. It had been mooted by Dr Des Turner, MP (Chair, APPG on ME), in October, that the inquiry might seek to obtain the necessary admin resources via Lord Darzi’s Office.

When the draft Terms of Reference were published in October, there were concerns that many of the processes and procedures through which this proposed inquiry would be undertaken remained undecided, that its aims and objectives remained undefined, and it was questioned whether the Terms of Reference, as they stood, could properly represent the voice of the ME community, in general, and the severely affected, in particular.

One view was that it would have been far better if some of the overall policies, practices and procedures had been thought through, worked out and incorporated into the terms of reference as a means of achieving the inquiry’s aims and objectives and then the matter put out to consultation with the ME community, with a reasonable timescale for people to respond within, and with a far better idea of what the inquiry plans to do and how it intends to carry out its plans.

It is not even known whether Dr Turner has been able to pull together a panel to undertake this inquiry.

So the progress of this project is left hanging.

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Status of the ME Alliance

On 20 November 2008, I raised a number of questions in relation to the current status of the existing ME Alliance.

Sir Peter Spencer was identified as the representative who would be taking responsibility for responding to these queries on behalf of the Alliance. To date I have received no response from Sir Peter to this request for clarification.

Since it is now over nine weeks since this request was first made, and since a number of reminders have since been sent, I can only assume that the issue of the status of the existing ME Alliance is not something about which Action for ME is prepared to be transparent.

See previous posting Countess of Mar group Forward-ME website

Posted in AfME, Action for M.E., APPG on ME, APPG on ME Minutes, Benefits, CFS Clinics, CFS Clinics Inquiry, DWP, Judicial Review, ME Alliance, ME Association, ME in Parliament, Mental Health Act, NHS service provision inquiry, NICE CFS/ME guideline, NICE Judicial Review, Welfare reform. Comments Off

NHS service in Norfolk and Suffolk: patients launch new website

January 23, 2009 — meagenda

From the ME Association’s news page: new website and online patient survey for people with ME/CFS in Norfolk and Suffolk.

The Norfolk and Suffolk ME/CFS Service Development Group

“The NHS is changing ME/CFS Services in Norfolk and Suffolk…

We need your views to clearly demonstrate to the NHS what patients want and don’t want from their ME/CFS Service.”

http://www.meassociation.org.uk/content/view/764/70/

NHS service in Norfolk and Suffolk – patients launch new website

Patient representatives campaigning for improvements to the NHS service for people with ME/CFS in Norfolk and Suffolk – which has been without a lead consultant since the retirement of Dr Terry Mitchell – launched a new website today to enlist the support of ME/CFS sufferers, their families and carers.

And there’s a prize draw to encourage patients with ME/CFS to take part in a confidential online patient survey. People are being asked to say what they want for an ME/CFS service in the two counties. The results will be passed on to NHS service commissioners.

Dawn Whittaker, one of the people behind the website, said: “The website has two functions – to publicise the patient survey and to keep people in Norfolk and Suffolk up to date with the development of ME/CFS services in the region.”

When the NHS has written its Draft Service Model, this will be put up on the website and patients encouraged to send in their own comments.

The Norfolk and Suffolk ME/CFS Service Development Group was set up at a meeting chaired by the Great Yarmouth and Waveney Primary Care Trust in August 2007. There are patient representatives on it for each of the following: Norfolk, Suffolk, Great Yarmouth and Waveney, the severely affected, and children and young people.

The patient survey is supported by Beccles and District ME/CFS Support Group, Suffolk Youth and Parent Support Group, local members of the 25% ME Group, ME Drop In Support Group Great Yarmouth, and West Norfolk ME Support Group.

The website and online questionnaire is here:

http://www.norfolkandsuffolk.me.uk/index.html

Posted in CBT, CBT/GET, CFS Clinics, CFS Clinics Inquiry, ME in children, NHS service provision inquiry, NICE, NICE CFS/ME guideline, NICE Judicial Review, PACE Trials. Comments Off

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Judicial Review NICE Guideline for CFS/ME

Where? | Room 76, Royal Courts of Justice, The Strand, London WC2A 2LL

When? | 11th and 12th February 2009

Why? | http://www.meactionuk.org.uk/nicejr.htm

What else do I need to know? | http://www.nicemecourt.co.uk

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The use of practice nurses in the management of ME/CFS

European Court rules on accrual of annual leave for the long-term sick

Next meeting of the APPG on ME

NHS service in Norfolk and Suffolk: patients launch new website

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High Court Hearing Countdown

Judicial Review NICE Guideline for CFS/ME

Where? | Room 76, Royal Courts of Justice, The Strand, London WC2A 2LL

When? | 11th and 12th February 2009

Why? | http://www.meactionuk.org.uk/nicejr.htm

What else do I need to know? | http://www.nicemecourt.co.uk

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