Whittemore Peterson Institute XMRV retrovirus study link with CFS: Media Round up 10

Whittemore Peterson Institute XMRV retrovirus study link with CFS (Science journal): Media Round up 10

WordPress Shortlink: http://wp.me/p5foE-2bk

This is the tenth Round up of media coverage of the Whittemore Peterson Institute XMRV study published, last week (08.10.09), in Science journal.  Round ups also include commentary from patient organisations, patient community websites and bloggers and links for related material.

 

Press Release:

The European ME Alliance  www.europeanmealliance.org 

Eight-Country European ME Alliance Issues Kudos to WP Institute, Pledges Cooperation
October 16, 2009

The European ME Alliance www.europeanmealliance.org  is a group of European organizations formed less than a year ago to encourage more ME/CFS biomedical research funding – Belgium, Denmark, Ireland, Germany, Norway, Sweden & UK.
__________________

ME Alliance Press Release Oct 16:

The European ME Alliance (EMEA) wish to congratulate the Whittemore- Peterson Institute for the painstaking, professional and groundbreaking work which its staff have performed, along with the National Cancer Institute and the Cleveland Clinic, which has resulted in the publication of the findings of a novel virus XMRV in causing or influencing ME.

The members of EMEA recognize that the staff at WPI are performing research of the highest quality.

The publication of this research in Science magazine is itself an amazing achievement.

This work has been achieved in an amazingly short period of time and the tenacity, dedication and sheer excellence of the WPI has brought hope to millions of people, patients, carers and friends, in Europe and further afield.

EMEA announces its continued full support for WPI and hopes to be able to become a stronger partner in the future.

Signed by all members of the European ME Alliance:

Belgium – ME/CFS Association (Nieuwrode, Belgium)
Denmark – ME-NetDK
Ireland – Irish ME Trust
Germany – Fatigatio e.V.
Norway – Norges ME-forening
Spain – Liga SFC
Sweden – Riksföreningen för ME-patienter
UK – Invest in ME

The European ME Alliance
www.europeanmealliance.org

——————–

Tate Mitchell reports via Co-Cure mailing list    16 October 2009

The CFIDS Assoc. just posted some updates on their Facebook page, including a link to an interview with Laura Hillebrand, author of Seabiscuit, by The New Yorker, the Oct. 29-30 CFSAC meeting agenda is published, which is to include a presentation by Dr. Daniel Peterson entitled ‘XMRV Association with CFS’, and CFIDS Assoc. Scientific Director Suzanne Vernon writes about the new XMRV findings”

http://www.facebook.com/CFIDSAssn

Oct. 29-30 CFSAC agenda

http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac091029_agenda.html

Interview with Laura Hillebrand

http://www.newyorker.com/online/blogs/backissues/2009/10/back-issues-laura-hillenbrand.html

—————–

Commentary

http://www.facebook.com/note.php?note_id=185660730538&ref=mf

http://www.cfids.org/cfidslink/2009/110402.asp

Xplained

By Suzanne D. Vernon, PhD
Scientific Director, The CFIDS Association of America

The announcement on October 8, 2009, that an infectious retrovirus called XMRV (xenotropic murine-related retrovirus) was linked to CFS, could be the game-changing scientific event we have been waiting for. Whether XMRV provides the long-awaited causal link will depend on the findings described in the Science paper being replicated by another laboratory in another group of CFS patients. To help clarify what we know, let’s review the findings.

Dr. Judy Mikovits and her team at the Whittemore Peterson Institute for Neuro-immune Disorders (WPI) made a very insightful connection three years ago. XMRV was first described in prostate cancer in 2007 by investigators at the Cleveland Clinic, who also reported that XMRV-positive prostate cancer patients have alterations in RNase L, an antiviral immune system pathway. The WPI investigators knew that RNase L activity is also altered in blood cells from CFS patients and they made the decision to look for XMRV in CFS patients with this immune defect.

When scientists want to find a virus, we look for it in the sickest individuals because often this is where there is likely to be the highest levels of a virus, if present. Dr. Dan Peterson has been caring for and researching CFS patients since the 1984 Incline Village outbreak, so he identified CFS patients with prolonged disabling fatigue, cognitive impairment, and documented laboratory immunological abnormalities (including altered RNase L activity) to hunt for XMRV.

The WPI laboratory team detected XMRV sequences in 68 of 101 (67%) CFS patients tested and in 8 of 218 (3.7%) healthy control subjects. The Cleveland Clinic confirmed the presence of XMRV in a subset of these same CFS cases, 7 of the 11 (64%) samples from WPI. The Cleveland Clinic researchers found that the CFS XMRV was similar to prostate cancer XMRV, and not a mouse virus (murine leukemia virus) that could have been a contaminant explaining the discovery.

The investigators designed several new assays to understand XMRV. They looked to see if XMRV was expressed in peripheral blood mononuclear cells (PBMCs) of CFS patients. PBMCs from 19 of 30 CFS patients expressed XMRV proteins compared to 0 of 16 PBMC samples from healthy controls. They also wanted to know which cells harbored XMRV; they found it in T and B cells in the blood of one CFS patient. The investigators looked to see if the XMRV from CFS patients was infectious. Both blood cells and plasma (the cell-free fraction of blood) from XMRV-positive CFS patients were able to transmit this virus to a susceptible cell line, indicating infectiousness in laboratory culture. Finally, they wanted to know if XMRV stimulated the immune system to produce antibodies. Plasma from 9 of 18 CFS patients had antibodies that reacted with a virus protein similar to that found in XMRV, compared to no reaction from plasma of 7 healthy controls.

This Science paper tells us that XMRV plays a possible role in CFS pathogenesis in these CFS patients. How much we can generalize these findings to other CFS patient populations? That answer will depend on the results of replication studies.

The design of replication studies should include CFS patients who are similar to those selected by Dr. Peterson and reported in the Science study. Unfortunately, the details about the CFS patients were not sufficient to enable independent investigators to select similar CFS patients. For example, we need to know the age, sex, duration of illness, medical history, and medication use, to name a few characteristics, of the studied patients to select CFS patients who as similar as possible to the original group. We also need to know something about the healthy control subjects, since there is nothing in the paper or supplementary materials that describes how they were selected. Independent replication studies should also include patients with mild and moderate CFS, at least one chronic disease control group (e.g., multiple sclerosis, lupus) and sex and age-matched healthy controls. We are actively working with several independent research groups to expedite these studies.

While these exciting studies of XMRV continue, the CFIDS Association continues its support of our funded investigators. It’s important to remember that HIV was discovered to be the cause of AIDS 26 years ago, but worldwide research on AIDS treatment, cure and prevention continues today. Our funded investigators’ research on why EBV triggers CFS, whether ion-channel receptors are markers of fatigue, why CFS patients have higher rates of leaky gut, why CFS patients have slow blood flow to the brain, why CFS patients have metabolic disturbances in the brain, and how we can bring this information, as well as XMRV, together using powerful computational tools are all important as we work together to solve CFS.

References:
Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome. Lombardi VC, Ruscetti FW, Gupta JD, Pfost MA, Hagen KS, Peterson DL, Ruscetti SK, Bagni RK, Petrow-Sadowski C, Gold B, Dean M,  Silverman RH, Mikovits JA. Science 8 October 2009. 1179052.

Supporting online material for Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome. Lombardi VC, Ruscetti FW, Gupta JD, Pfost MA, Hagen KS, Peterson DL, Ruscetti SK, Bagni RK, Petrow-Sadowski C, Gold B, Dean M, Silverman RH, Mikovits JA. Science 8 October 2009.

A new virus for old diseases? Coffin JM and Stoye JP. Science 8 October 8 2009.

Information about the Association’s research program:
http://www.cfids.org/about/acceleratecfsresearch.asp

—————–

Commentary

Professor Andrew Lloyd AM
Director, Centre for Infection and Inflammation Research University of New South Wales

http://www.me-cfs.org.au/node/448

New Retrovirus – Comments by Professor Andrew Lloyd

©2002 – 2009 ME/CFS Society of NSW Inc. 

—————–

Commentary

RESCIND would like to emphasize what we feel are probably the two most powerful quotes on record in M.E. (C.F.S.) history…

Dr. Nancy Klimas as quoted from the Q & A New York Times article “Is a Virus the Cause of Fatigue Syndrome?” – posted online Oct 15, 2009

http://consults.blogs.nytimes.com/2009/10/15/readers-ask-a-virus-linked-to-chronic-fatigue-syndrome/

“But I hope you are not saying that C.F.S. patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V.”

Dr. Marc Loveless as quoted by Tom Hennessy from A Brief History of the Name Change Movement

http://www.rescindinc.org/history.htm

Dr. Shelekov looked puzzled and maybe a little skeptical. But Dr. Marc Loveless, sitting next time to him said, “Dr. Shelekov, this man (meaning me) is telling you the truth. I have treated more than 2500 AIDS and CFS patients over the past 12 years. and my CFS patients are MORE sick and MORE disabled, every single day, than my AIDS patients are, except in the last two weeks of life!”

I immediately said to Dr. Loveless that “YOU have to use that line in every speech you give on this illness for the rest of your life!” (in 1994, Dr. Loveless gave this same testimony under oath to the US Congress).

——————–

Radio broadcasts

Science Friday on NPR

“Science Friday is a weekly science talk show, broadcast live over public radio stations nationwide from 2-4pm Eastern time as part of NPR’s ‘Talk of the Nation’ programming.”

http://www.sciencefriday.com/about/listen/

Podcast:  Virus Tied to Chronic Fatigue Syndrome

Clicking on this link will start download of mp3 Podcast from Science Friday site:

http://podcastdownload.npr.org/anon.npr-podcasts/podcast/510221/113890711/npr_113890711.mp3 

——————–

Patient community websites and blogs

Cort Johnson’s Phoenix Rising website

http://aboutmecfs.org/Rsrcs/XMRVResources.aspx

The news on XMRV is breaking fast and items are being added regularly to the XMRV Resource Center on Phoenix Rising. The Resource Center has links to scientific articles, analyses by chronic fatigue syndrome specialists (check out the video by Dr. Klimas on CFSKnowledge Center), media reports, Q&A’s, blogs and more.

Hillary Johnson (journalist and author of Osler’s Web)

Website: http://oslersweb.com/

Blog: http://oslersweb.com/blog.htm

——————–

Related links

http://www.transworldnews.com/NewsStory.aspx?id=130725&cat=12

Science and Technology News

Hemispherx Biopharma Finds New Retrovirus in Chronic Fatigue Syndrome

Rochester, New York 10/16/2009 08:55 PM GMT (TransWorldNews)

Hemispherx Biopharma, Inc. (AMEX: HEB) has announced a discovery of a novel retrovirus in Chronic Fatigue Syndrome (CFS). The retrovirus may shed light on the potential mechanism of action of Ampligen, an experimental therapeutic, in CFS. CFS is a debilitating disease of unknown etiology that affects 17 million worldwide…

—————–

About.com 

Fibromyalgia & CFS Blog

http://chronicfatigue.about.com/b/2009/10/16/update-ampligen-for-chronic-fatigue-syndrome-2.htm

UPDATE: Ampligen for Chronic Fatigue Syndrome
Friday October 16, 2009

NEWSBRIEF: We now have an update on the FDA’s much-delayed decision on Ampligen for chronic fatigue syndrome that explains why we’ve been kept waiting for so long….

——————–

Links to scientific coverage

Whittemore Peterson Institute Q and A
Whittemore Peterson Institute Press Release
Science News: Retrovirus might be culprit in chronic fatigue syndrome
New Scientist: Chronic fatigue syndrome linked to ‘cancer virus’
Scientific American: Retrovirus Linked to Chronic Fatigue Syndrome, Could Aid in Diagnosis
Nature: Virus linked to chronic fatigue syndrome
NIH News: Consortium of Researchers Discover Retroviral Link to Chronic Fatigue Syndrome

——————–

Previous ME agenda Media Round ups

Round up 10: Whittemore Peterson Institute XMRV retrovirus study link with CFS (Science journal):
http://wp.me/p5foE-2bk

Round up 9: Notice from Dr David Bell, Lyndonville News; Article by Paul R. Cheney MD, PhD:
http://wp.me/p5foE-2aQ

Round up 8: XMRV retrovirus study: Position statement from ME Association 14.10.09: http://wp.me/p5foE-2at

Round up 7: XMRV Retrovirus: Whittemore Peterson Institute: CFS: Media Round up 7: http://wp.me/p5foE-2aa 

Round up 6: XMRV Retrovirus: Whittemore Peterson Institute Chronic Fatigue Syndrome study: Videos and audios: http://wp.me/p5foE-29L 

Round up 5: Supporting Online Material for XMRV Chronic Fatigue Syndrome study: http://wp.me/p5foE-299

Round up 4: XMRV Retrovirus: Whittemore Peterson Institute Chronic Fatigue Syndrome study:
http://wp.me/p5foE-28F

Round up 3: Whittemore Peterson Institute (WPI) Chronic Fatigue Syndrome retrovirus XMRV in the media: http://wp.me/p5foE-280

Round up 2: Science 9 October 2009: Whittemore Peterson Institute (WPI) Chronic Fatigue Syndrome link to retrovirus: 08.10.09: http://wp.me/p5foE-27v

Round up 1: Whittemore Peterson Institute (WPI) Chronic Fatigue Syndrome link to retrovirus: 09.10.09: http://wp.me/p5foE-272

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:

http://www.youtube.com/watch?v=ndqP-pSrj6I

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:

http://www.youtube.com/watch?v=a0Jgz8kZLmk

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:

http://www.youtube.com/watch?v=Wqf4YVUiRxQ

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

http://www.youtube.com/watch?v=i770zeuZO40

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

http://www.youtube.com/watch?v=D_iIve7qfPw

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

action4change4me

The WHO Somatisation Project: The Elephant in the Room Part Two

elephant2

Image | belgianchocolate | Creative Commons

The Elephant in the Room Part Two

The WHO Somatisation Project [CISSD Project]

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 Two

[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.]

Update: This morning I have written to Mr Nick Boatwright, Head of Finance, Action for ME, requesting clarification of the source(s) of funding for the grants of £24,000 recorded in accounting period year end 31 March 2006 and £18,750 recorded in accounting period year end 31 March 2007.  Any response received will be published, here.  [Updated: 03.02.09]

The previous report at: 

https://meagenda.wordpress.com/2009/01/31/the-who-somatisation-project-the-elephant-in-the-room/

provided some background to the issue of AfME’s involvement with the “WHO Somatisation Project” [CISSD Project]. It also raised questions and concerns about AfME’s role, their objectives and their lack of transparency around this Project…

We are still waiting for AfME to set out exactly what the nature of their relationship with the WHO has been relative to this Project, what functions and tasks AfME had agreed to undertake on behalf of the Project, where the funding for the 2006 and 2007 grants has come from and what AfME has spent this money on, and for a clear picture of what their objectives have been, as patient representatives.

In the meantime, I’d like to set out in Part Two the links between one source of funding and Dr Richard Sykes, Co-ordinator of the CISSD Project and “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 Psychiatry.

The previous posting highlighted three grants provided to AfME in relation to this Project:

From the 2006 Accounts:

Page 15
 
Movements in restricted funds
Revenue Restricted Funds
 
WHO Somatisation Project         Incoming Resources 2006:  £24,000    Outgoing Resources 2006:  £24,000

Source of funding unspecified

From the 2007 Accounts:
 
Page 13
 
Movements in restricted funds
Revenue Restricted Funds

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

Source of funding unspecified

From the 2008 Accounts: 

Page 14

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

Page 23
 
15 Incoming and Outgoing Resources
 
Under Charitable activities  

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

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.

So over the past three years, AfME appears to have been in receipt of a total of £62,750 for activities relating to the “WHO Somatisation Project” [the CISSD Project].  Funding provided, AfME says, for the purposes of “lobbying the WHO” and for “disseminating the findings” of the CISSD Project. 

It’s not clear from the 2006 and 2007 Accounts, but had been thought that the source of the first two grants might have been the WHO, themselves.  If this were the case, it starts to become hellishly complicated – for why would the WHO provide funding to AfME to enable them to “lobby the World Health Organisation for the recognition of M.E. and its recategorisation as a physical illness” and why would the WHO need to be “lobbied” to recognise M.E. and recategorise it as a physical illness when Myalgic encephalomyelitis is already indexed in WHO ICD-10 at G93.3, and has been classified since 1969?

So the information AfME had given in its Accounts about the purpose of these two grants didn’t appear, on the surface, to make a lot of sense.

According to the information in the 2008 Accounts relating to the third grant, AfME would appear to have been undertaking the role of disseminators of the Project’s findings, which suggests that AfME had played an integral role as facilitator for this CISSD Project.  How and when did this come about?  Through what means was AfME engaged in disseminating the Project’s findings? Was AfME attending UK and international conferences and presentations or was Dr Richard Sykes fulfilling this role?  Who would be “producing a number of recommendations”?  The CISSD Project Group or its Co-ordinator, Dr Sykes, or AfME, themselves?

It has yet to be confirmed whether these three grants were intended to be used in full, or in part, by AfME, to support the work that Dr Sykes has done and may still be doing, in his role as Co-ordinator of the Project, or whether Dr Sykes received funding for this role from other source(s) or whether he received no funding, at all; if not for this use, what has the funding been spent on?

What little information AfME has placed in the public domain has been worded in such a way that it is not possible to disentangle what the CISSD Project Group were tasked to do, what the Project’s Co-ordinator, Dr Richard Sykes, had been co-opted to undertake and what AfME were undertaking, in the name of the Project, and for which three grants had been provided.

And this is why it is essential that AfME clearly sets out its relationship to the WHO in respect of this CISSD Project and the history of its involvement in this Project in order that its members and the wider ME community might disentangle the enmeshment between the WHO and the CISSD Project, between AfME and the WHO, between AfME and the CISSD Project, between Dr Sykes and the CISSD Project and between AfME and Dr Sykes.

Dr Richard Sykes relationship with The Hugh and Ruby Sykes Charitable Trust

Dr Richard Sykes is the brother of Sir Hugh Sykes.

Charity Commission Register of Charities

Sir Hugh is a Trustee of The Hugh and Ruby Sykes Charitable Trust and also a Trustee of a number of other charitable organisations, including the Industrial Trust.

Sir Hugh’s brother, Dr Richard Sykes PhD, was the Director of the organisation known as Westcare (Westcare UK).  In September 2002, the assets and operation of Westcare were transferred to Action for ME in what was viewed by some as having been a very controversial so called “merger”.

See:  The ONE CLICK AfME Dossier

Extract:  AfME Report and Accounts Year end 2003

http://www.afme.org.uk/res/img/resources/2002-2003%20Charity%20Accs%20Part1.pdf

Page 6 of 11

“Merger
Action for M.E. merged with the charity Westcare UK on 17th September 2002.

“Westcare UK was a smaller Bristol based charity, providing services to people with M.E. It had a high reputation in the field for its national residential courses and telephone support lines and regionally based clinical services.

“Westcare UK was a leading proponent of the practice of “pacing”, a rehabilitation approach recognised within the CMO’s report as beneficial and consistently judged to be the most helpful approach in Action for M.E.’s surveys of its members.

“Westcare UK was also renowned for its publication of occasional reports, which had national impact.

“Action for M.E. has placed on record its appreciation of the work of Westcare UK’s trustees, its founder and director Dr Richard Sykes and benefactors, including Sir Hugh Sykes, whose support made the merger possible.”

Sir Hugh Sykes was also a Trustee of Westcare.  Through The Hugh and Ruby Sykes Charitable Trust, funding was provided to help finance Westcare on a year by year basis:

Extract: Westcare Financial Statement (Document courtesy of The ONE CLICK Group)

http://tinyurl.com/westcare02financial

FINANCIAL STATEMENTS

1 July 2001 – 30 June 2002

Page 3

Trustees

[…]

Sir Hugh Sykes DL

——————-

Page 5

Report of the Trustees continued

Subsequent Events

“On 17 September 2002, the assets and operation of Westcare were transferred to Action for ME.”

——————-

Page 10

Recorded under

Notes to the Accounts

2. Donations – Businesses, Organisations & Trusts

H&R Sykes Charitable Trust*     General, £25,000      Restricted, £0         2002, £25,000          2001, £25,000

[…]

(Footnote)

*”Sir Hugh Sykes is the original settlor of Westcare UK and is the brother of the Director, Richard Sykes”**

Although in February 2007, AfME’s Communications Manager, Heather Walker, may have momentarily conflated the WHO Somatisation Project as having had something to do with Dr Richard Sykes and Westcare, a strong historical link exists between Dr Richard Sykes, Westcare, Sir Hugh Sykes and Action for ME and its so called “merger” with Westcare.

And now a contemporary relationship has been forged between AfME, the WHO Somatisation CISSD Project, Dr Richard Sykes (CISSD Project Co-ordinator and “Honorary Member” of the WHO Collaborating Centre, KCL/IoP) and his brother, Sir Hugh Sykes, via this grant of £20,000 that The Hugh and Ruby Sykes Charitable Trust has provided to AfME “to disseminate the findings of the WHO Somatisation Project”  with the aim of producing “a number of recommendations which, if accepted by the World Health Organisation, would be of direct benefit to people with M.E.”

I call publicly on Action for ME for a full report on the history of its involvement with this CISSD Project, its funding, its aims and objectives and its implications for the ME patient community.

**For definition of the term “settlor” see http://www.hmrc.gov.uk/manuals/tsemmanual/tsem1017.htm

To be continued

Compiled by Suzy Chapman

Published: 02.02.09
Updated: 03.02.09: Contacted Nick Boatwright, Finance Manager, AfME for confirmation of source of two grants in 2006, 2007 for CISSD Project

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

elephant

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 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?

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?

 

Further reading:

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

http://www.cfs-aktuell.de/mai07_1.htm

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:  http://tinyurl.com/sykesgermantoenglish

———————

 

Published paper: 2006:

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

http://www.ncbi.nlm.nih.gov/pubmed/16581355

[Abstract]

Sykes R.

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

WHO Collaborating Centre, Institute of Psychiatry, University of London, United Kingdom. richardsykes@blueyonder.co.uk

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)

http://www.jpsychores.com/issues/contents?issue_key=S0022-3999%2806%29X0365-3

[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

http://www.who.int/mental_health/evidence/icd_summary_report_march_2008.pdf

———————-

Paper: 2007:

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

http://tinyurl.com/riefisaacpaper

[Abstract]

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

Abstract

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]

———————-

Review

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: http://content.karger.com/produktedb/produkte.asp?typ=fulltext&file=000109949

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:
https://meagenda.wordpress.com/2009/02/02/the-who-somatisation-project-the-elephant-in-the-room-part-two/

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.

Next meeting of the APPG on ME

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.

———————–

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.

———————–

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

Does Action for ME operate openly and is it fulfilling its obligations to the Big Lottery Fund?

Can Action for ME be said to be operating openly and democratically and is it fulfilling its obligations to the Big Lottery Fund?

As issues around the AfME National ME Observatory are currently being debated, it may be useful to revisit a posting from last year; this is prefaced with commentary on just one aspect of Action for ME’s management of the National ME Observatory Project:

Action for ME has yet to fulfil its obligation to the Big Lottery Fund to create a website or dedicated webpages for the purpose of communicating with the public, professionals and the ME community and for disseminating reports and results on the various projects being undertaken and for the publication of other information relating to the operation of the Observatory.

Even basic information such as the names of members of the Observatory Steering, Management and Reference Groups and other individuals or organisations involved in this Project, the organisations these individuals represent and their function within the Project Groups or within the Observatory Project as a whole, is still not publicly available and has not been published on Action for ME’s website or on a dedicated website.

[The following information taken from documents provided by the Big Lottery Fund under FOI Act.]

Total grant awarded by the Big Lottery Fund to Action for ME in March 2006 was £503,028

The revised yearly breakdown, as it stood on 1 November 2007, was:

Year One  £213,105
Year Two  £171,644
Year Three  £118,279

Of this, £23,120 has been allocated for “Publicity and dissemination“, broken down over three years:

Year One  £8,000
Year Two  £7,300
Year Three  £7,820

During the application assessment process, it had been agreed with the Big Lottery Fund that the Project would carry out certain tasks in each year of the grant.

Extract Page 6, Grant Offer, taken from document provided by the Big Lottery Fund under FOI Act:

Page 6: Project tasks

During the assessment of your application we agreed that your project would deliver certain tasks during each year of the grant.

We will ask you to report on how far you have met these each year.  For more details of this see ‘Monitoring your grant’ on pages 10-13 of your Grant offer pack.  The tasks that we agreed are as follows:

Year One – Action for ME

  • Initiation of National ME Observatory collaboration, including media announcements in lay and professional media, and establishing communication links with the CFS/ME community.
  • Website will contain some information on support for social inclusion of people living with CFS/ME and their families in England.

Year One – University of East Anglia, London School of Hygiene & Tropical Medicine, University of Hull

  • Report of main findings of the systematic review of support for social inclusion of people with CFS/ME in England.
  • Initial report of the pilot of disease register for CFS/ME.

Year Two – Action for ME

  • Expansion of web-based communication facilities for Observatory, in order to improve facilities for dissemination of the results of the project, and preparation of strategy for succession funding.
  • Workshops involving people benefiting from research.

Year Two – University of East Anglia, London School of Hygiene & Tropical Medicine, University of Hull

  • Descriptive epidemiological study: completion of patients recruitment.
  • Report of main findings of quality studies (studies IV, V and VI)

Year Three – Action for ME

  • Dissemination of results through workshops reporting back to people with CFS/ME, conferences, publications, the media and web-based facilities, and submission of research proposals for further funding.

Year Three – University of East Anglia, London School of Hygiene & Tropical Medicine, University of Hull

  • Descriptive epidemiological study: report of main findings
  • Disease register: evaluation of pilot study and complete proposal for extension of register.


In Table 10, Page 46, of Action for ME’s funding application document “Establishing A Chronic Fatigue Syndrome (CFS)/Myalgic Encephalomyelitis (ME) OBSERVATORY FOR SOCIALLY-INCLUSIVE EPIDEMIOLOGICAL AND SOCIAL RESEARCH INTO CFS/ME” submitted to the Big Lottery Fund in 2005, a figure of £2000 was projected for “The internet-website for CFS/ME Observatory” for the dissemination of information to a target audience of “lay public, CFS/ME community, Professional, carers, Stakeholders” with the delivery date given as the second and third years.

On 6 November 2007, the Big Lottery Fund Grant Officer had written to Dr Trish Taylor, CCd to Sir Peter Spencer, requesting an interim monitoring report detailing progress to date against agreed tasks and any changes to the project that may have occurred.  In particular, comments on the project tasks for year one were requested. 

According to the document “National M.E. Observatory Long Term Strategy to Funding, Derek Pheby, 14 September 2007″, work on the three year programme had begun in April 2007.  In 2008, the Observatory Project would have entered Year Two –  in which “Expansion of web-based communication facilities for Observatory, in order to improve facilities for dissemination of the results of the project, and preparation of strategy for succession funding” had been an agreed task. 

The Project will shortly be entering Year Three and Action for ME are significantly behind schedule over the creation of the website/webpages for the dissemination of information relating to the Observatory.

In late November 2008, Action for ME’s Heather Walker advised one enquirer that “The Observatory will have web pages accessible via Action for M.E.’s website” and that these are being produced by Action for ME’s IT Manager in association with the University of East Anglia but there is still no web presence for the Observatory.

How much longer is it going to take Action for ME to fulfil this requirement of their grant award?

Is the Big Lottery Fund Grant Officer aware that no website for the dissemination of information about this project is in operation; that AfME has failed to set out lines of accountability for those responsible for the management of this project and for the oversight of the spending of £500,000 of public money and that no channel of communication exists between the project’s management and the public because this has yet to be facilitated?  Therefore the operation and progress of this project and those responsible for it cannot be monitored by the public because this information is not available for public scrutiny.

————————

Disclosure by AfME of the composition of the Steering and Management Groups for the National ME Observatory
[First published on ME agenda on 29 October 2008]

“The irony of this is, that as a result of AfME and the Observatory Project Group Co-ordinator’s decision not to place the information I had requested in the public domain the result has been that I have actually ended up with a vast bundle of stuff – the research proposal application documents, the research project costings, copies of the three independent expert review reports, the business plan, the research agreement, variation reports, copies of letters and emails between AfME/Observatory Project personnel and The Big Lottery Fund, internal and external correspondence relating to applications submitted by other individuals under FOI for information about the Observatory Project; staff costings, job specs, costings for equipment, travel, workshops, conference attendance, translations, transcriptions, video equipment, printing, consumables, development of a website…” 

AfME finally coughs up with a list of names!

I’d like to set the following on record:

On 1 October 2007, I first contacted Dr Derek Pheby, AfME National Observatory Project Co-ordinator, (CCd to AfME’s Sara Brooks):

I wrote:

“Following the 16 June meeting of The ME Association Board of Trustees, Dr Charles Shepherd published a summary of key points emerging at that meeting. In his summary, Dr Shepherd writes:

‘A meeting of the ME Observatory Steering Group took place on the same day. As this clashed with the Board meeting, the MEA could not, unfortunately, be represented.’

To the best of my knowledge, The ME Association has not made any announcement to this effect, but I assume from what Dr Shepherd has written in his summary that a representative of the ME Association, possibly Dr Shepherd, himself, has been appointed to the ME Observatory Steering Group.

Issue 61 of AfME’s InterAction magazine carries an update on the National Research Observatory which includes a list of lay members appointed to the Steering Group and a list of those appointed to a Reference Group but there is no mention of Dr Shepherd’s appointment or of any others who may have been appointed over and above lay members.

I would like to make a formal request for the following information:

1] Have any other representatives of national ME patient organisations (other than the MEA and AfME’s own staff and Trustees) been allocated seats on the Steering Group and through what process were these seats allocated?

2] Other than any ME patient organisations, have any other organisations or individuals (other than those specifically named lay individuals that comprise the Steering and Reference Groups and are named as such in InterAction) been allocated seats on the Steering, Management or any other group or groups that comprise the Observatory Project and through what process were these seats allocated?

3] Would you please provide a complete list of members of:

The Steering Group (both lay and professional)
The Management Group
The Reference group
Any other individuals or organisations involved in this Project

The list to include:

Name of individual
Organisation Represented (where appropriate)
Function within Project Group or within Project as a whole

Contact details for individuals/organisations are not required.

If a Line Management organisational chart has been produced then a copy of this would also be welcomed.”

Apart from confirming that Dr Shepherd (MEA) did indeed hold a seat on the Steering Group, Dr Pheby provided no responses to these questions, stating that “Those lay members who were appointed as a result of the exercise all consented to have that fact reported in Interaction. We were obliged to seek that consent as a result of our obligations under the Data Protection Act, which restricts what further information we can disclose about other participants in the project whose consent to disclosure has not at this stage been sought.”

Dr Pheby evidently had no inclination to obtain consent in order to release a list of names to me nor did he appear to consider that the information I had requested should already have been placed in the public domain.

Continue reading

ME patient organisation end of year round up

ME patient organisation end of year round up

01.01.09

ME Association:

The response submitted to PULSE in relation to the Bass article on somatoform disorders has still not been published.

A copy of the MEA’s response can be found in the news section of the MEA website here:

http://www.meassociation.org.uk/content/view/735/70/

or here, on ME agenda:

https://meagenda.wordpress.com/2008/12/23/pulse-mea-responds-to-article-on-somatoform-disorders/

The only additional response that has been published by PULSE is from Belinda Rowland, 25 Dec 08, one time student nurse, currently NHS clerical:

http://www.pulsetoday.co.uk/story.asp?storycode=4121546

***********************

Action for ME:

According to AfME’s e-newsletter: Keep Me Updated 3

“The Medical Research Council (MRC) has set up a multi-disciplinary panel* to try to entice new talent into the field.

“MRC-critics may scoff but the Chair, Professor Stephen Holgate*, has overseen significant progress in respiratory research and Boris Leszek, Chief Executive of the MRC, is taking a personal interest, so there is hope.

“Action for M.E.’s Sir Peter Spencer, who attended the group’s first meeting, alongside Dr Charles Shepherd of the MEA, said: “The meeting of minds has considerable potential for re-invigorating research into M.E. The emphasis is very clearly on biomedical scientific research.”

“A workshop will be held later next year, looking at how to engage scientists and new technology in investigations on the physiology of M.E. and to collect data to identify separate types of the illness which relate to genetic variations.”

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

*Ed: Professor Stephen Holgate also chairs the CFS Research Foundation’s research committee.

** For a list of current members of the MRC’s “multi-disciplinary panel” obtained under FOI see:

https://meagenda.wordpress.com/2008/12/12/foi-request-mrc-cfsme-multi-disciplinary-panel-members-list/

A copy of the Terms of Reference for this new MRC group will be posted here when I have received this document from the MRC.

For a copy of AfME’s report on the inaugural meeting of the MRC’s “multi-disciplinary panel” see:

https://meagenda.wordpress.com/2008/12/19/mrc-multi-disciplinary-panel-expert-panel-inaugural-meeting/

***********************

ME Alliance:

Action for ME’s Sir Peter Spencer has yet to provide a response to the following questions first raised with AfME and the ME Association on 20 November 2008:

To: ME Alliance: Heather.Walker@afme.org.uk ; peter.spencer@afme.org.uk ; charles.c.shepherd@btinternet.com ; tbritton02@yahoo.com

Re: Current status of the ME Alliance

It was understood that the existing ME Alliance was anticipated to be reconvening earlier this year.

I should be pleased if you could clarify the following:

1] Is the ME Alliance still extant?

2] Who are the current members of the ME Alliance?

3] Does the ME Alliance currently have a convener and who is the convener?

4] When did the last meeting of the ME Alliance take place and which organisation reps were present at that meeting?

5] Has a date for a future meeting of the ME Alliance been set and when is the next meeting anticipated to be held?

6] Does the current ME Alliance have a constitution, mission statement or statement of objectives and if so where can these be accessed?

7] Does the ME Alliance intend to publish an agenda, minute, note or summary of any meetings it might hold in the future?

There has been much speculation amongst the ME community about whether the meetings being held by the Countess of Mar are a “new Alliance” or a “Reformed Alliance” which has replaced the “old Alliance”.

Given that very little information about the existing ME Alliance has been issued over the last couple of years since the departure from Action for ME of Chris Clark, and given the evident confusion about the current status of the ME Alliance it would be appropriate for a statement to be issued clarifying the situation and responses provided to the queries raised above.

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

It is now six weeks since these questions about the existing Alliance were first raised with AfME and the MEA.

Heather Walker of AfME has identified Sir Peter Spencer as the person within AfME authorised to respond to queries in relation to the existing ME Alliance; I have received no response at all from the ME Association on these matters.

A futher request for clarification of the status of the existing ME Alliance will be sent, today, to Sir Peter and to the ME Association.   It is beginning to look as though the status of the existing ME Alliance is an issue about which neither AfME nor the ME Association is prepared to be transparent.

***********************

APPG on ME:

The next meeting of the All Party Parliamentary Group on ME is provisional for February ’09.  The Minutes of the October ’08 meeting can be read here on ME agenda:

https://meagenda.wordpress.com/2008/12/15/appg-on-me-minutes-of-meeting-8-october-2008/

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Proposed APPG on ME Inquiry into NHS service provision for people with ME:

The ME Association and Action for ME provide joint secretariat function for the APPG on ME and both organisations were involved in the drawing up of the draft Terms of Reference. There had been considerable concerns over the inquiry’s draft Terms of Reference and around the APPG’s lack of proper consultation other than with AfME and the MEA over both the Terms of Reference and the scope and objectives of the proposed inquiry, in general.

According to the Minutes of the October APPG, Dr Turner had said:

“…the APPG Inquiry into NHS Services would look at what NHS services were available and make recommendations. It would consider whether there was a need for a national service framework for ME.”

and

“…like the Gibson Inquiry into research, the Inquiry would invite written evidence from people with ME/CFS and those involved with providing NHS services and, having considered the written evidence, it would then invite a number of people to give oral evidence. Ciaran Farrell asked if individuals would be allowed to submit their experiences and views. The Chair said they would be invited to submit written evidence in the first instance.”

But no deadlines for submissions of Written Evidence have been announced by the APPG and neither have any dates for hearings for oral evidence.  The final Terms of Reference have yet to be published and so remains unknown what amendments have been made to the draft document or whether the APPG has taken any heed of the concerns that were submitted, in November.

Dr Charles Shepherd, MEA, has since 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 no patient questionnaire has been issued.

Those who have been able to use “hospital based services” are less likely to include the moderate to severe and severely affected – unless domiciliary services are also being provided for those patients too ill to travel to clinics.

How will the panel set about ensuring that its inquiry is inclusive of the views, opinions and experiences of the moderate to severe and severely affected and that any recommendations the panel makes in any report resulting out of its inquiry reflects the needs of the moderate to severe, and severely affected?

On the matter of funding for this unofficial inquiry, it had been stated 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. Ciaran Farrell cautioned against this, as a pharmaceutical company might compromise independence. The Chair said he would ensure that sponsors would not influence outcomes.”

On the matter of timescales, it had been stated 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).”

No invitation to submit written evidence was issued before Christmas.

Given the (as yet unresolved) issues around the draft Terms of Reference, given the scope of this project, the lack of resources (both admin and funding for the project), current uncertainties over who is going to be responsible for collection and processing of data and uncertainties over other processes through which this proposed project is going to be undertaken, it seems very unlikely to me that this project can be properly and proficiently resourced, undertaken and completed before the summer recess.

The next APPG on ME meeting isn’t scheduled until February. I will post any updates on the progress of this proposed inquiry as they are issued.

***********************

Invest in ME:

Invest in ME’s December e-newsletter is now available to download as a PDF here:

http://www.investinme.org/IIME%20newsletter.htm

or as a webpage here:

http://www.investinme.org/IIME%20Newsletter%20Dec%2008.htm

Invest in ME Newsletter – December 2008 Nr. 08/12

IN THIS ISSUE
Lynn Gilderdale
Invest in ME International ME/CFS Conference 2009 News
Norway Establishes ME Centre
Dr Martin Lerner’s EIPS
Quick Topics
UK MRC Panel
Christmas ideas for ME

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Forward-ME, Countess of Mar: Minutes available

Ed: The Countess of Mar was shortlisted for a Social Welfare Champion award in the “Charity Champions Award 2008″ (in Association with ePolitix and the parliamentary publication, The House Magazine).

The Countess had been nominated by reMEmber (The Chronic Fatigue Society), a member of Forward-ME.   The Social Welfare Champion award was awarded to Barbara Keeley MP.

Forward-ME

http://www.forward-me.org.uk/

Ed: Forward-ME, the group convened by the Countess of Mar, was described in the Minutes of the APPG on ME meeting of 8 October 2008 as the “extended ‘Alliance’ group”.

I have been waiting since 20 November for Sir Peter Spencer to provide responses to my questions around the existing ME Alliance. See: 

https://meagenda.wordpress.com/2008/12/08/countess-of-mar-group-forward-me-website/

The website for Forward-ME is now live and Minutes of the meetings chaired by the Countess of Mar on 8 October and 18 October are now available.

From the home page:  http://www.forward-me.org.uk/

WHAT WE ARE – WHAT WE DO

Forward-ME consists of a fairly broad spectrum of charities and voluntary organisations invited by the Countess of Mar to meet from time to time. The Aim of Forward-ME is to promote effective joint working by ME and CFS organisations to maximise impact on behalf of all people with ME and CFS in the UK.

Forward-ME has no formal constitution. It exists to improve recognition, understanding, research, management, support and information for everyone whose life is affected by ME and CFS.

MEMBERSHIP

Membership of Forward-ME is by invitation, but any reasonable and constructive contributions to our deliberations from any individual or organisation representing people with ME will be considered by us.

PRINCIPLES OF WORKING

We seek to maximise consensus but respect those who have differing views.*

*Ed: RiME has been excluded from these meetings.

Members are free to opt in or out of specific group activities.

CONTACT US

By email to: Info@Forward-ME.org.uk

By Post to: Countess of Mar, Chairman Forward-ME, House of Lords, Westminster, London SW1A 0PW

Links to related organisations

These organisations all participate in the meetings convened by Forward-ME and their individual websites can be viewed using the links below.

Association of Young People with ME http://www.AYME.org.uk
Invest in ME http://www.Investinme.org
ME Association http://www.MEAssociation.org.uk
ME research http://www.meresearch.org.uk
Action for ME http://www.AfME.org.uk
Tymes Trust http://www.tymestrust.org
reMemberCFS http://www.remembercfs.org.uk/
25% ME http://www.25MEGroup.org
Blue Ribbon for awareness of ME http://www.Brame.org  

——————————————————–

Ed: Note that neither of these two meetings were attended by representatives for AYME and Invest in ME.

——————————————————–

Joint CFS/ME meeting on 8 October 2008

Opening statement

Countess of Mar

Welcome.

The trigger for my suggesting this meeting was my growing concern that very few MP’s attend the APPG meetings.

At the last one, as you know, by the end of the meeting there were only your Chairman and myself – preaching to the converted?

Until the message you want to convey is heard loud and clear by legislators and government your objectives will never be achieved.

I have been in the House of Lords for very nearly 33 years. I have taken an active role in some successful campaigns and have watched the progress of other winners. What comes to my mind immediately is that they have always been supported by a united, informed and determined base of people who want to win.

One of my husband’s favourite sayings is “emotion clouds reason”. I fully appreciate that ME is a physically and mentally sapping illness and that a failure to achieve can lead to emotional stress, dissent and division in the ranks. Over the years I have been made very aware of disagreements between the various representative organisations that, even when they are minor in fact, they are fairly major in effect. If I know about them then others who make the vital decisions at central and local level do so also. A difference of opinion – professional or lay, is a wonderful excuse for others to do nothing and doing nothing while going through the motions of construction is precisely what has been happening. I think of the CMO’s Report, the NICE Guidelines and all the advice emanating from the DoH and the DWP, for example.

I know that there are a lot of people with many brilliant ideas beavering away in their local communities. I have enormous respect and admiration for them. They are severely hampered by a lack of funds. Even if funds are made available, they are not powerful enough on their own to evade the bureaucratic sponges that soon mop up the cash.

Similarly, there are groups who collect money for research. They find scientists who, very often, will have a connection with ME and will conduct a small scale research project on a shoe-string. I cannot help but think that we could build upon the successes of MERUK, Professor Kerr and others if funds were pooled and the ME organisations were in position to demand that government match funding. This would lead to the provision of proper research facilities; would produce scientifically credible results, and would lead to acceptance of the reality of the disease by the professionals who have been so sceptical and have done so much damage.

I do hope that all of us here today will develop a strategy for bringing together all those who suffer from ME or are supporters and that we can then move on to transform the ME scene. Time is short so let’s go.

MINUTES OF THE FIRST JOINT ME/CFS MEETING HELD ON 8 OCTOBER 2008 IN THE HOUSE OF LORDS.

1. PRESENT:

Christine and Tanya Harrison – BRAME
Doris Jones – 25%ME Group
Bill and Janice Kent – remember*
Jane Colby – TYMES Trust
Peter Spencer – AfME
Sue Waddle – MERUK
Charles Shepherd – MEA

Margaret Mar – Chairman

*Ed: Registered with the Charity Commission as “reMEmber The Chronic Fatigue Society”

2. APOLOGIES: Mary-Jane Willows – AYME, Kathleen McCall – Invest in ME

3. WELCOME: The Chairman welcomed all the participants to the meeting. She explained the reasons for her invitation, what she saw as the objectives of all those working for people with ME and hoped that all those present would work together in order to achieve those objectives.

4. The Chairman invited each participant to make a brief statement of the aims and objectives of their organisation; what they believe have been the obstacles to progress; what solutions they propose and how they think the solutions should become actions.

5. OBSTACLES TO PROGRESS

Examples included:

(i) Nearly all the speakers were agreed that a major obstacle existed in the name and the image of the illness and until there was an agreed name progress would be difficult.

(ii) Guidelines issued by NICE, DWP and the NHS all produced difficulties for patients seeking appropriate treatment.

(iii) Ignorance and the attitude of medical professionals; misdiagnosis; the psychosocial/behavioural model and the lack of diagnostic guidelines caused major problems for patients.

(iv) Lack of biomedical research funding and of long-term follow-up of cohorts was mentioned.

(v) Disunity between UK ME charities and voluntary groups regrettably made it more difficult to address the above issues.

6. SOLUTIONS

Proposals included:

(i) ME should be separated from CFS and the WHO classification ICD-10 G93.3 should be adhered to. The fact that ME is also listed under the UK’s National Service Framework for long-term neurological conditions and that it is also listed as a neurological condition in the UK’s Read Code under F286 should be promoted.

(ii) All Government departments, particularly DoH, DWP and the Treasury, for example, should be challenged regarding (i) and asked to ensure that their guidelines comply with the listing.

(iii) Working in partnership, not only with other ME charities, but with others such as Disability Alliance and National Voices was essential.

(iv) Working together to raise awareness of the general public, the press and, in particular, of the medical profession of the seriousness of ME was also important.

(v) ME charities should work together to establish a strategy for biomedical research into disease mechanisms and with researchers and research organisations as well as the MRC to devise a common UK research agenda.

7. HOW ARE SOLUTIONS TO BECOME ACTIONS?

It was agreed that, whilst there were some differences of opinion on diagnosis and management between charities, these could be overcome if all agreed that there should be an open-minded approach to the challenges being faced. The Group agreed that they should be totally transparent in all their activities and that a website should be created upon which all papers, agendas and minutes of meetings would be placed.

It was suggested that the framework of the ME Alliance might be used as a vehicle for unity and that there should be an independent chairman. This would be discussed at the next meeting of the Group together with a constitution and activity programme.

8. NEXT MEETING.

It was agreed that meetings of the group should be chaired by an independent person and that the Countess of Mar should chair the next meeting.

The date of the next meeting to be arranged.

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

FORWARD-ME

MINUTES OF THE MEETING HELD ON

TUESDAY 18 NOVEMBER 2008

AT THE HOUSE OF LORDS

PRESENT:

Christine and Tanya Harrison – BRAME
Doris Jones – 25% ME Group
Bill and Janice Kent – ReMEmber
Jane Colby – Tymes Trust
Peter Spencer – AfME
Sue Waddle – MERUK
Charles Shepherd – MEA
Margaret Mar – Chairman

APOLOGIES: Mary-Jane Willows – Ayme [sic], Kathleen McCall – Invest in ME

MINUTES OF MEETING ON 8 OCTOBER 2008.

The minutes of the meeting were amended and agreed.

MATTERS ARISING

There were no matters arising from the minutes.

CONSTITUTION OF FORWARD-ME

After some discussion it was agreed that:

(i) Forward-ME would have no formal constitution.

(ii) Membership would be by invitation from the chairman.

(iii) For the time being, all references to ME would be ‘ME and CFS’.*

*Ed: One presumes because some members of the group are representatives of organisations that use “encephalopathy”, and two members of the group are representatives of an organisation which operates under and is registered in the name of “The Chronic Fatigue Society”.

NICE AND BELIEFS ABOUT ME and CFS

(i) There was extensive discussion on the processes by which NICE arrived at the Guidelines; the reasons for the deficiencies that were pointed out at the time of publication, and the problems that have arisen since.

(ii) Judicial Review was to take place on 11 – 12 February 2009.

(iii) The possibility of separating CFS and ME was discussed. It was suggested that, as the NICE Guidelines were to be reviewed during 2009, Forward-ME should consider making a submission to NICE. This would be discussed at the next meeting.

(iv) It was agreed that the differing views on the NICE guidelines and Judicial Review would be respected.

JOINT ACTIVITIES

A. Welfare Reform Green Paper

(i) The AfME and BRAME reports – No one written off: problems and potential solutions for people affected by chronic fluctuating conditions (see AfME website) and No one written off – BRAME’s response to the Welfare Reform Green Paper (see BRAME website) were discussed briefly.

(ii) It was agreed that the need to overcome the problem of patient derived evidence being dismissed as ‘grey material’ was pivotal. The means by which this was done for the CMO’s 2002 Report were discussed. Expert advice would be sought.

(iii) AfME and MEA would be monitoring experiences that PwME have with the new benefits system. Other charities and voluntary organisations were invited to contribute. The possibility of creating a common questionnaire was discussed. Interested members would initially combine their expertise in order to create an agreed format to be produced by early spring.

(iv) The questionnaire would be made available to anyone interested through the Forward-ME and respective charity and voluntary groups’ websites. The results would be analysed and published.

B. APPG Inquiry into NHS Services for People with ME

(i) Whilst the Inquiry was welcomed in principle there were several practical problems including timing, questionnaire and resources, all of which would have to be resolved by the APPG.

C. Research Agenda

(i) It was agreed that charities and voluntary groups should act together to press the MRC to take more positive action to bring about biomedical research into disease mechanisms as a matter of urgency. This scientific research should address essential questions about the aetiology and pathogenesis of the illness with a view to developing preventative and curative treatments, as well as a diagnostic test.

(ii) The valuable contributions charities and voluntary organisations can make to research include patient participation, funding pilot studies and promoting research findings. To this could be added in future (subject to funding), funding research fellowships and PhD student grants.

(iii) AfME and MEA had been invited to a meeting with Professor Stephen Holgate and his new MRC advisory group. This would take place on 15 December 2008 and would include discussion about the framework for a workshop to be held in 2009. They would report back to the next meeting.

FORWARD-ME WEBSITE

(i) ‘Forward-ME had been registered on the internet and the website address was http://www.forward-me.org.uk. A web manager had been appointed.

(ii) The site would be kept simple, with links to the other charities and voluntary organisations which would be free to publish any documents they had submitted to Forward-ME if they wished.

(iii) All material to be put on the site would have the prior approval of members of the group.

ANY OTHER BUSINESS

(i) there was some discussion about a private letter written to a correspondent by the chairman in which she outlined her views on NICE and CBT/GET. She responded to several questions from the 25% ME Group.

(ii) It was suggested that Forward-ME could look at the shortcomings in NHS provision including waiting lists and availability of consultants. It was agreed that this was what the APPG was proposing to examine and that Forward-ME should not pre-empt the APPG inquiry.

DATE OF NEXT MEETING

The date of the next meeting to be arranged.

Ed: I can find no copies of the positions statements which some organisations submitted prior to the meeting or handed round at the meeting itself. The position statements of The 25% ME Group and Invest in ME can be read at the end of this posting on ME agenda.  I had been advised that it had been planned to publish these on the Forward-ME website.

https://meagenda.wordpress.com/2008/11/10/the-countess-of-mars-meeting-with-me-patient-organisations/

Lynn Gilderdale: Media coverage, 10.12.08

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.

****************************************

Lynn Gilderdale Tribute website

http://lynngilderdale.net/

Please read the Lynn Gilderdale Tribute website Disclaimer at:

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

 

freefoto

Check back later for additional links which will appear on this entry underUpdates since this morning”

Overnight, the Telegraph published three additional articles: one an update on the status of the case, the second, a commentary on ME from Dr Max Pemberton and a third in which Elizabeth Grice talks to the family of severe ME sufferer, Emily Collingridge and to Sylvia Penny, mother of severe sufferer, Michelle.

On the Mail site, Esther Ranzten, President to the children and young person’s organisation AYME, who has written many articles in the past about her daughter Emily’s recoveries and is currently ascribing her daughter’s recovery to the Lightning Process, has written a lengthy piece about her daughter with commentary on the death of Lynn Gilderdale.

This morning, the Gilderdale case was featured on ITV which included commentary from Dr Charles Shepherd (a URL for a video clip will be posted here when available).

Yesterday, 9 December the case was reported on Channel 4 (video link below).

Updates since this morning

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

Video links courtesy of Tom Kindlon, Irish ME Society

Channel 4 evening news item:

http://link.brightcove.com/services/player/bcpid1529573111

In Tuesday 9th December Part 3 section click ‘play’ and move gauge
along to around the 13:20 area.

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

(Channel) 5 News

http://www.fivetvonline.tv/news.php?page=2&news=1370

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

BBC 5-Live

around 1.08

http://www.bbc.co.uk/iplayer/console/b00ft25d

or

“Drive” Tuesday

http://www.bbc.co.uk/fivelive/programmes/

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

BBC

Hope for more ME awareness

http://news.bbc.co.uk/1/hi/england/7775862.stm

includes interviews with Dr Charles Shepherd (ME Association) and Criona Wilson (mother of Sophia) and also with Daily Mail journalist, Gill Swain.

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

NHS blog

http://nhsblogdoc.blogspot.com/2008/12/myalgic-encephalomyelitis-chronic.html

[An earlier version of this entry drew attention to an error made by “Dr Crippen” on his blog where he had stated that Dr Charles Shepherd was medical adviser to “The ME Society”.  “Dr Crippen” has since posted a clarification.  Dr Charles Shepherd is a medical adviser and a Trustee of the national patient organisation, The ME Association. ]

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

The Sun

http://www.thesun.co.uk/sol/homepage/news/article2022473.ece

ME girl Lynn and her mum

By ANTONELLA LAZZERI

10 December 2008

THIS is the first picture of ME victim Lynn Gilderdale with her mum – now suspected of killing her.

Lynn, 31, looks pale and fragile and has a medical tube taped to her cheek as mother Kay tenderly nuzzles up to her.

Last week Lynn was found dead from a suspected morphine overdose after being bedridden for 17 years by “yuppie flu” myalgic encephalomelitis…

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The Argus

http://www.theargus.co.uk/news/3964749.Murder_suspect_mum_speaks_out/

Mum Kay Gilderdale’s support through allegations of Heathfield “mercy killing”

11:12am Wednesday 10th December 2008

By Andy Chiles

A mother suspected of the mercy killing of her ME sufferer daughter spoke yesterday of the “great support” she had received from family, friends and the community.

Kay Gilderdale, 54, was at home in Stonegate, near Heathfield, after being released on bail by Sussex Police.

She was arrested on Thursday on suspicion of the murder of her daughter Lynn Gilderdale, 31, who was found dead that morning.

Det Chf Insp Andy Griffiths, leading the investigation, yesterday refused to confirm Miss Gilderdale had died from an overdose of the painkiller morphine, as had been reported in the national press…

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Wednesday, 10 December

Telegraph

http://www.telegraph.co.uk/news/uknews/3690981/Mother-arrested-over-mercy-killing-could-face-long-wait-for-charges.html

Mother arrested over ‘mercy killing’ faced with long wait

A mother arrested on suspicion of killing her daughter in a ‘mercy-killing’ may have to wait four months to find out if she is charged with murder…

By Caroline Gammell and Murray Wardrop

Last Updated: 9:54PM GMT 09 Dec 2008

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http://www.telegraph.co.uk/health/3692446/Why-ME-remains-a-mystery-to-doctors-and-their-patients.html

Why ME remains a mystery to doctors and their patients

The term Myalgic Encephalomyelitis (ME) entered the International Classification of Diseases in 1969 and described a baffling, medically unexplained cluster of symptoms that includes widespread muscle and joint pain, chronic, severe exhaustion and difficulties with concentration and memory.

By Max Pemberton

Last Updated: 12:46AM GMT 10 Dec 2008

This results in a variably debilitating condition. Most criteria used for diagnosis state that the condition must be present for more than six months and all state that the symptoms must not be the result of other medical conditions. Since the late 1980s the term Chronic Fatigue Syndrome (CFS) has gradually replaced ME and the pejorative term ”yuppie flu”. There are numerous theories concerning the underlying cause…

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http://www.telegraph.co.uk/health/3692639/I-had-three-years-of-nothingness-of-hell.html

‘I had three years of nothingness, of hell’

As the mother of an ME sufferer is suspected of her ‘mercy killing’ Elizabeth Grice talks to another family blighted by the cruel disease.

By Elizabeth Grice
Last Updated: 12:50AM GMT 10 Dec 2008

This is only the third telephone conversation Emily Collingridge has been strong enough to receive this year.

She can manage to hold the phone but it is painful against her ear and her mental processes are stretched to the limit to sustain a conversation. Either her brain is racing far too fast, or running too slow, she explains. “It is as if there is a huge wall in my head. I am on one side and all my mental skills are on the other. I hope one day I will scrabble up and climb over the wall.”

Losing her cognitive ability is only part of it. Collingridge has been bedridden for three years and ill for as long as she can remember…

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Daily Mail

http://www.dailymail.co.uk/femail/article-1093325/ESTHER-RANTZEN-I-weep-devoted-mother-For-I-watched-daughter-endure-living-death-ME.html

ESTHER RANTZEN: I weep for this devoted mother. For I, too, watched my daughter endure a living death from ME

By Esther Ranzten
Last updated at 12:59 AM on 10th December 2008

Kay Gilderdale has lived for 17 years in a hell I understand only too well. Her daughter Lynn had been suffering from ME in its most severe form – unable to walk, talk, swallow food or hold up her head. Throughout those years, Kay was her child’s devoted and constant carer, providing round-the-clock comfort and support without a trace of self-pity. Now Kay has been arrested, suspected of a mercy killing, after her daughter’s death from a morphine overdose last Thursday.

[Image: Recovery: Emily Wilcox, who suffered from ME, with mother Esther Rantzen]

It is not for me to judge what role she did or didn’t play in Lynn’s final hours. But I do know the heartbreak she must have endured, watching her daughter suffer for so long…

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ITV

Interview with Dr Charles Shepherd

[Link for video to be posted if/when available]

ITV website

http://www.itv.com/Lifestyle/ThisMorning/Health/MyalgicEncephalopathyME123/default.html

This Morning – Myalgic Encephalopathy (M.E)

M.E

Vicky Shepherd, 23 has been battling with Myalgic Encephalopathy (M.E) for over half her life.

Vicky believes the illness was triggered from when she had Glandular Fever when she was 11, but it took five years before Doctors came up with the diagnoses…

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Channel 4

Tuesday 9 December

http://link.brightcove.com/services/player/bcpid1529573111?bclid=4170244001&bctid=4366136001

13.06 mins in from start.

Commentary from Dr Charles Shepherd (ME Association).  Images of 25% ME Group website.

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Image Freefoto.com

Countess of Mar group Forward-ME website

Today, AfME (Action for ME) publishes the Christmas 2008 issue of InterAction magazine.

On Page 9, AfME announces the URL for the website for this group that was instigated by the Countess of Mar.

From Page 9, InterAction 66 Christmas 2008

http://www.afme.org.uk  

Countess of Mar

The Countess of Mar, a long-time supporter of people with M.E., met representatives from Action for ME, BRAME, ME Association, ME Research UK, 25% Group, TYMES Trust and reMEmber on 8 October to identify areas of common ground. AYME and Invest in ME were invited but unable to attend. The Countess found that agreement exists on 80-90% of issues and concluded that there was therefore a case for creating a new forum for M.E. charities. When asked if she would lead such a group, she agreed to chair the next meeting.

The meeting was held on 18 November. It was decided to call the forum FORWARD ME and to adopt the aim of promoting effective joint working by M.E. organisations to maximise their impact on behalf of people with M.E. in the UK.

The website is www.forward-me.org.uk . It will promulgate actions and decisions taken and details of specific joint activities.

Ends

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Ed: RiME has not been invited to attend these meetings.

Meanwhile, Action for ME’s Sir Peter Spencer has yet to provide a response to the following:

sent to:

To: ME Alliance: Heather.Walker@afme.org.uk  ; peter.spencer@afme.org.uk  ; charles.c.shepherd@btinternet.com  ; tbritton02@yahoo.com

Re: Current status of the ME Alliance

It was understood that the existing ME Alliance was anticipated to be reconvening earlier this year.
I should be pleased if you could clarify the following:

1] Is the ME Alliance still extant?

2] Who are the current members of the ME Alliance?

3] Does the ME Alliance currently have a convener and who is the convener?

4] When did the last meeting of the ME Alliance take place and which organisation reps were present at that meeting?

5] Has a date for a future meeting of the ME Alliance been set and when is the next meeting anticipated to be held?

6] Does the current ME Alliance have a constitution, mission statement or statement of objectives and if so where can these be accessed?

7] Does the ME Alliance intend to publish an agenda, minute, note or summary of any meetings it might hold in the future?

There has been much speculation amongst the ME community about whether the meetings being held by the Countess of Mar are a “new Alliance” or a “Reformed Alliance” which has replaced the “old Alliance”.

Given that very little information about the existing ME Alliance has been issued over the last couple of years since the departure from Action for ME of Chris Clark, and given the evident confusion about the current status of the ME Alliance it would be appropriate for a statement to be issued clarifying the situation and responses provided to the queries raised above.

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These questions were first raised with AfME on

20 November 2008

I shall be writing again, this morning, to Sir Peter Spencer for a clarification.