Text version: Review of Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk

Text version of Review of the Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk by Chris Douglas

Shortlink to this posting: http://wp.me/p5foE-34M

or http://tinyurl.com/ReviewIiMEProposalText

For the Word file of this document and related information go here:

Review of the Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk

 

TEXT VERSION

Review of the Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk

By Chris Douglas

27 August 2010

Introduction

In August 2010, Invest in ME (IiME) published a document titled: ‘A New Era in ME/CFS Research: An Opportunity for Major Progress in Diagnosis, Treatment and Research into Myalgic Encephalomyelitis’¹.

It is assumed that this document is a precursor to a more formal and detailed proposal that will be used to secure consultative input and financial commitment to the project.

The following review highlights specific areas in which the proposal could be strengthened if, in particular, it is to maximise commitment from potential financial donors.

1. Scope
2. Objectives
3. Service Provision Model
4. Funding
5. Conflicts of Interest

1. Scope

1.1. Geographic Scope

The scope of a proposal has direct bearing on project objectives and methodology and provides a framework within which the project can be assessed.

In the current proposal, it is unclear whether the Centre is aimed at servicing the Norfolk region only or the UK as a whole (which, presumably, would include Scotland and Northern Ireland). For example, there is reference to a “national centre of excellence for ME” whilst also discussing East Anglia as being a ‘region of opportunity’.

In particular, it is unclear whether there is a distinction in national and regional service provision between the separate clinical and research facilities detailed in the proposal (and located in Norfolk and Norwich University Hospitals, and the University of East Anglia/Norwich Research Park respectively).

If the clinical service is intended to be national, the following questions arise.

Why has Norwich been selected as a location (given that it has poor logistical accessibility for the rest of the country)?
Have other geographic locations and facilities been considered?
If so, how has their suitability been assessed and by whom?

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For both a national and regional remit, the following questions arise for the clinical service.

Why have Norfolk and Norwich University Hospitals (N&NUH) been selected to host the Centre’s clinical facility?
What specific types and levels of expertise would N&NUH bring to the Centre?
Does N&NUH health care staff have the capabilities and infrastructure to deliver the proposed service and, if not, how would this be addressed?
Have other facilities been considered?
If so, how has their suitability been assessed and by whom?

For a national and/or regional remit, the following questions arise for the research service.

What is the rationale for selecting the University of East Anglia/Norwich Research Park (UEA/NRP) to run the Centre’s research programme?
Has the UEA/NRP submitted a formal proposal for hosting the research programme?
If so, who has assessed this and how has it been assessed?
Have other research facilities been asked to submit proposals?
If so, who has assessed these and how have they been assessed?

The distinction between a national and regional service is further confused by the assumption that the Centre’s ‘translational’ model can be achieved only where the clinical and research services share the same geographic location.

The rationale for this assumption is unclear and, indeed, is contrary to the existing health care provision framework in the UK which operates through a countrywide network of medical facilities within (or co-ordinated by) the National Health Service (NHS).

1.2. Disease Scope

The document uses the nomenclature ‘ME’ (myalgic encephalomyelitis) to describe the condition that it intends to cover although there are further associated illnesses that overlap with ME and, indeed, may actually be the same disease (e.g. fibromyalgia, atypical MS, atypical lupus).

In addition, the UK medical profession uses other terms to describe ME, including Post Viral Fatigue Syndrome (PVFS), Chronic Fatigue Syndrome (CFS) and even just chronic fatigue.

The UK medical profession also lacks clarity and consistency in disease definition and diagnosis, an issue which, as pointed out in the proposal, can lead to patients being diagnosed incorrectly (either as having ME when they do not or not having ME when they do).

To avoid the considerable confusion and inaccuracy of existing nomenclature, definition and diagnosis, it may be preferable to adopt the term ‘neuroimmune disease’, as used by the US Whittemore Peterson Institute (WPI) which the proposal states is a role model for the Centre.

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This may also avoid the potential confusion between the Centre of Excellence and existing NHS ME/CFS Centres (referred to in the proposal) which attract criticism for, amongst other things, their lack of biomedical intervention and focus on occupational and behavioural therapies.

In addition, this would provide a platform for further research into the human gammaretrovirus (HGRV) family which has been linked with ME and is the current focus of the WPI. The current proposal does not make reference to this retrovirus and this would seem an oversight given (a) the growing scientific interest in this area and (b) that donors to IiME’s Biomedical Research Fund approved support of the WPI’s UK study of HGRVs. It is also highly relevant for diagnostic purposes (a key focus of the proposal) given the likelihood that HGRVs will become, at very least, a biomarker for ME.

2. Objectives

Successful projects are underpinned by objectives which are specific, quantified, achievable and measurable.

The current proposal omits specific, quantified objectives or project ‘deliverables’, possibly because these are difficult to define given the lack of a precise scope.

Once the scope has been clarified, it may help to establish an overarching mission, a set of objectives and a timeline for implementation.

Given that this is a start-up project with a limited budget (see 4. Funding), it may be prudent to begin with a limited remit that can be met within a short lead-time and then used as a basis from which to develop more ambitious plans.

An example clinical mission would be: ‘To translate international biomedical research findings and therapies into clinical treatments for patients in Norfolk.’

Clinical objectives could include:

– to diagnose and treat x number of patients over time period y
– to deliver xx% improvement in patient health and well-being over time period y
– to train x number of N&NUH doctors in the diagnosis and treatment of ME over time period y

An example research mission would be: ‘To implement research programmes that complement and support those of the WPI.’

Research objectives could include:

– to complete x number of studies (by specified type) over time period y
– to replicate/validate findings of research study z
– to test the efficacy of treatments a, b and c over time period y

The proposal lists eleven project benefits and certain of these could be classed as deliverables (e.g. domiciliary services) but would require greater detail based on a

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quantified top line objective (e.g. diagnosis and treatment of a specified number of housebound patients pa).

All objectives would require an accompanying plan for delivery and methods of measurement and assessment.

3. Service Provision Model

In the absence of specific and robust objectives to use as a benchmark, it is difficult to assess the potential outcome efficacy of the proposed service model although questions about operational efficiency can be raised at this stage.

The diagram in figure 1 is a graphic representation of the service provision model described in the proposal. The shaded organisations are those which, combined, form the Centre of Excellence.

Fig 1. Overview of assumed service provision model

The proposal describes this as a “simple but effective structure”, although it could be argued that the model is, actually, quite complex given the number of stakeholders and communication pathways that are involved.

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In addition, four separate organisations and geographic locations constitute the Centre of Excellence itself, which makes it a concept rather than a single entity, and so conflicts with the proposal’s underlying theme of a closely integrated operation.

The responsibilities of each of the organisations within the Centre are unclear from the proposal, as are how they will inter-relate and how communication and control will be managed.

In particular, the proposal requires more detailed explanation of the roles of Norfolk PCT and N&NUH, not only in terms of how they may provide patient services regionally and/or nationally, but also in terms of their potential model for other PCTs and hospital trusts to follow, as well as their operation within the NICE (National Institute for Health and Clinical Excellence) guidelines for treating ME.

The proposal states that “a new commissioning director at Norfolk PCT…is supporting the steering group’s views”. It would be helpful to name the individual in question and also include their input in detail.

The position of a ‘clinical biomedical lead consultant’ is mentioned and also that candidates have been approached for this role, although their remit and responsibilities, selection and measurement criteria, and reporting structure are not explained. Similarly, it is unclear how the ‘GPs with special interest’ who support the lead consultant will be identified, enrolled, trained and funded.

The proposal recognises the critical importance of training health care staff (and also mentions ‘visiting experts’) although it is unclear who will be responsible for training the N&NUH staff, which staff will be trained and how training will be implemented and monitored.

Staff training will be paramount to the Centre’s success, particularly given the NHS’ current dearth of biomedical knowledge about ME and its inappropriate and, sometimes, harmful treatment options for the disease (as per the NICE guidelines, mentioned above). IiME needs to demonstrate that the NHS’ long established and entrenched misunderstanding of ME can be corrected, and swiftly, if the Centre is to gain the confidence of patients and commitment of financial donors.

With specific reference to IiME’s involvement in the project, the proposal would benefit from more detailed explanation of the following.

For each of the three IiME entities (charity, limited company and steering group):

– role
– management structure
– governance
– overlap with the other two entities

For the charity and steering group specifically:

– members and/or trustees (other than the two named in the proposal)
– how members/trustees are appointed
– who appoints members/trustees
– to whom members/trustees are accountable
– how members/trustees are monitored

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For IiME Ltd specifically:

– when the company was/will be incorporated
– business classification and trading objectives
– share structure and ownership
– board members and responsibilities
– relationship with Norfolk PCT and N&NUH (given that the proposal refers to IiME Ltd supporting service commission by the former from the latter)

In addition, it would be helpful to understand how the Centre’s work might be integrated with that of other ME research organisations such as ME Research UK (currently funding a HGRV study in Sweden), the UK CFS Research Foundation (supporter of Dr Jonathon Kerr’s research for many years), as well as with its stated role model, the US WPI.

4. Funding

The proposal omits a top line funding requirement, a budget break-down and a cost-benefit analysis for the project.

Norwich local newspaper, EDP24, has stated: “Discussions will be going on over the next few months and once a decision has been made, funding will begin to the tune of £150,000 a year.”²

This amount seems low in the context of the proposed service provision model and particularly in comparison to the Center for Molecular Medicine (home of the WPI at the University of Nevada) which cost $77 million to establish.

The proposal states that funding for research would be “organised and provided by the charity and the UEA” although there is no further detail of how this would be supported nor who would fund the clinical element.

As a consequence, the following information remains to be confirmed.

The estimated cost (overall and breakdown) of establishing and maintaining the Centre over a given time period (for example, five years).

The share and source of funding to be provided by each of the organisations involved in the Centre.

How the funds will be raised by each of the contributing organisations.

Methods for monitoring expenditure, measuring outcomes and reporting to fund contributors.

For those funds raised via IiME (the charity), whether donors will contribute to the Centre as a whole or to specific research and/or clinical projects.

For IiME (the charity), the share of funding to be sourced via the following:

– general donations to the charity;
– profits from sale of IiME’s annual conference DVD;

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– donations to IiME’s Biomedical Research Fund;
– donations to a separate Centre specific fund.

•  Whether, after completion of the WPI’s UK study, any residual monies in IiME’s Biomedical Research Fund will be transferred to the Centre or remain in the Fund for further research projects, and whether donors’ approval will be sought for either course of action (as per the precedent set when monies were reallocated from Dr Kerr’s withdrawn research to the WPI’s UK study).

5. Conflicts of Interest

Fund donors may wish to see further explanation for, and clarification of, the following potential conflicts of interest.

Dr Ian Gibson’s involvement in this project will raise concerns with those who did not welcome his unofficial ‘Gibson Inquiry’ into ME (as referenced in the proposal) and the subsequent uncorrected ‘e-report’ which was published in October 2006³. There were significant criticisms of the way that Dr Gibson and his panel undertook this inquiry (which was a personal project and not a formal Parliamentary Inquiry or Report), such as the involvement of Lord Turnberg, a known supporter of cognitive behavioural therapy (CBT) and graded exercise therapy (GET), and the absence of proper consultation with the inquiry’s constituency of interest at all stages throughout the life of the project. Previously a Labour backbencher, Dr Gibson was barred from standing for the party in the 2010 general election following questions about his ministerial expenses.

Dr Fiona Poland of UEA’s Institute of Health and Social Science Research is working in partnership with Action for ME (AfME) and a network of universities on part of a major ME research project sponsored by the Big Lottery Fund (i.e. reporting and developing early findings on the impact of the illness and available means of support). The association between UEA and AfME will raise concerns with a growing number of patients who openly criticise the latter’s role, agenda and efficacy, particularly in terms of its apparent unwillingness to support biomedical ME research and to challenge the psychosocial paradigm.

The Norwich Research Park is a joint venture between the UEA, and amongst others, the Sainsbury Laboratory which, in turn, is supported by the UEA and the Gatsby Foundation. The Gatsby Foundation is one of a number of Sainsbury Family Charitable Trusts which share the same administrators and counsels. This includes the Linbury and Ashden Trusts which have provided funding for the RNHRD NHS FT, Bath (the ‘Min’) and the University of Bristol’s controversial trial of the Lightning Process on children and for which IiME has stated its public opposition.

The Institute for Food Research (IFR) and The Genome Analysis Centre (TGAC) are institutes of the Biotechnology and Biological Sciences Research Council (BBSRC). The BBSRC grant-aids the John Innes Centre (based in Norwich Research Park) which hosts the Sainsbury Laboratory and the TGAC. BBSRC is one of seven Research Councils that work together as Research Councils UK (RCUK). It is funded from the Government’s Department for Business, Innovation

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and Skills (BIS). This is a complex organisational structure which makes it difficult to achieve transparency in funding governance and also to identify potential conflicts of interest.

It is unclear from the proposal whether ME support groups in the Norfolk region (or nationally, if the scope is such) are involved in this project and the degree to which they have provided input and support. It is also unclear whether there has been any wide-scale patient consultation for this project or if any is planned in the future.

References

1 Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk August 2010
‘A New Era in ME/CFS Research: An Opportunity for Major Progress in Diagnosis, Treatment and Research into Myalgic Encephalomyelitis’

2 EDP24 “Norwich centre for ME sufferers planned” 03.08.10

3 THE ONE CLICK GROUP REPORT THE GIBSON ‘INQUIRY’ 17 January 2007

 

Chris Douglas is an ME sufferer and ex-corporate project manager.

douglas_chris@hotmail.co.uk

© Chris Douglas 2010

Review of Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk

Review of the Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk by Chris Douglas

Shortlink to this posting: http://wp.me/p5foE-33z

or http://tinyurl.com/ReviewIiMEProposal

At the 5th Invest in ME International ME/CFS Conference held in May, this year, a proposal was announced for the establishing of a “Centre of Excellence for ME” in Norfolk. To the best of my knowledge, Invest in ME had undertaken no national consultation with ME patients before drawing up its proposals.

Today I am publishing a review of Invest in ME’s proposal prepared by Chris Douglas.

A text version of this review is published in the next post.

 

Review of the Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk

By Chris Douglas

27 August 2010

Introduction

In August 2010, Invest in ME (IiME) published a document titled: ‘A New Era in ME/CFS Research: An Opportunity for Major Progress in Diagnosis, Treatment and Research into Myalgic Encephalomyelitis’¹.

It is assumed that this document is a precursor to a more formal and detailed proposal that will be used to secure consultative input and financial commitment to the project.

The following review highlights specific areas in which the proposal could be strengthened if, in particular, it is to maximise commitment from potential financial donors.

Review of the Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk

Open Word document here: Norfolk Proposal Review 27.08.10

A text version of this Word document is published in the next post

 

Related information

Invest in ME

“Invest in ME is an independent UK charity campaigning for bio-medical research into Myalgic Encephalomyelitis (M.E.), as defined by WHO-ICD-10-G93.3.”

Invest in ME is constituted as a Trust, registered with the Charity Commission and run by a committee of three Trustees/Directors. Invest in ME is not a membership organisation. The organisation was founded in 2006 by carers and patients, Sue Waddle, Richard Simpson and Kathleen McCall (current chair). Ms Waddle has since stood down as a Trustee.

http://www.investinme.org/Research%20-%20ME%20Institute.htm

Invest in ME

A UK Centre for Biomedical Research into ME

Read the announcement here

The Research Proposal published by Invest in ME in July can be read here in PDF format:

       Biomedical Research Institute Proposal July 2010

“A New Era in ME/CFS Research 

“An Opportunity for Major Progress in Diagnosis, Treatment and Research into Myalgic Encephalomyelitis”

“A VISION FOR THE FUTURE

“Recent biomedical research and advances in knowledge and treatment regarding Myalgic Encephalomyelitis have brought more urgently needed awareness of this disease. In the East Anglian region of UK an opportunity now exists to bring real benefit to patients and establish a unique capability which will attract attention and recognition from across UK and Europe.”

 

Media coverage

Great Yarmouth Mercury

Hopes for ME centre in Norfolk raised

31 August 2010

“…The independent charity will carry out the official campaigning for funding for the centre once a formal agreement is made.

“Now the charity has offered to send some of the UEA researchers to a biomedical research symposium in Australia at the end of the year.

“Mr Simpson said: “This would involve them discussing work with the top ME researchers and clinicians in this field from around the world.

“Discussions are under way, and we are really hopeful this will move things forward. The centre could change the lives of patients with ME. Early diagnosis is so important, and this centre would help establish that.’

“The charity is also planning to organise a conference in Norwich with the UEA and the Norfolk and Norwich University Hospital and is lining up discussions with the US Whittemore Peterson Institute, an institute for neuro-immune disease in Nevada that helps thousands of people with ME through research, scientific developments and treatment…”

———————

Norwich Evening News

Plans for world class Norfolk centre

Sarah Hall  |  27 August 2010

———————

Environmental Illness Resource Blog

UK to get WPI Inspired Chronic Fatigue Syndrome Research and Treatment Centre

News – Chronic Fatigue Syndrome News

Matthew Hogg  |  13 August 2010

———————

EDP24

Norwich centre for ME sufferers planned

Sarah Hall  |  3 August 2010

Sunday Times: Question a doctor and lose your child

Accusations of MSbP (FII) against parents of children and young people with ME, the placing of children and young people on the “at risk” register, threats of child protection proceedings and in some cases, forcible removal of a child or young person from the home via court orders into hospital wards (sometimes on locked psychiatric wards or where parents are denied visiting rights) by social services, community paediatricians or paediatric consultants, in cases where a child’s diagnosis has been challenged by the family or where the family has rejected treatments such as CBT/GET or psychosocial management of their child’s illness have, equally disturbingly, been taking place for years within the ME patient community.

Sunday Times  |  06 September 2009

http://www.timesonline.co.uk/tol/life_and_style/health/article6823345.ece

Question a doctor and lose your child

Ashleigh Cave lost the use of her legs after a vaccination

“PARENTS are being threatened with having their children taken into care after questioning doctors’ diagnoses or objecting to their medical care.

“John Hemming, a Liberal Democrat MP, who campaigns to stop injustices in the family court, said: “Very often care proceedings are used as retaliation by local authorities against ‘uppity’ people who question the system.”

Cases are emerging across the UK.

“The mother of a 13-year-old girl who became partly paralysed after being given a cervical cancer vaccination says social workers have told her the child may be removed if she (the mother) continues to link her condition with the vaccination. “

Read full story here

John Hemming’s blog: http://johnhemming.blogspot.com/

Related information:

Panorama report  |  Sick and Tired  |  Mathew Hill  | 1999

Report and video clips: http://news.bbc.co.uk/1/hi/events/panorama/506549.stm

Click here for  BBC Transcript of Panorama “Sick and Tired” broadcast

—————–

From Page 22 of the “Gibson Report”, 2006

http://www.erythos.com/gibsonenquiry/Report.html

3.3.4 Vaccination

“Vaccination is often blamed for unexplained outbreaks of illness and regularly appears in the media being accused of such. The Group found that there is no strong evidence to link CFS/ME to vaccination and it is unlikely to be a cause…”

Extract from unofficial transcript prepared from audio recording of the public meeting held by the “Gibson Inquiry” panel in London, 6 February 2007. Dr Ian Gibson has been a champion of the mass vaccination of young girls through the cervical cancer vaccine programme:

Extract picks up towards the end of the first half of the meeting:

Dr Charles Shepherd (Medical Advisor, ME Association) (CS): The second quibble is in 3.34 and what you said about vaccinations. I think your wording there is really going to cause people problems by saying that the Group found there is no strong evidence to link CFS/ME to vaccination and it is unlikely to be the cause. It is, I believe a cause or trigger factor in a significant minority of people with this – I’ve probably got more patients in the UK that anyone else with vaccine induced ME – these are anecdotal cases, OK – I think I’ve probably got about 200.

Dr Ian Gibson, (former MP for Norwich North) (IG): Well, we didn’t want to get into anecdotal things…

CS: I know…

[Gibson talks over CS: ??????????]

CS: …but if you looked at your experts who gave evidence – besides myself, Weir, Pinching, Byron Hyde – all who reported anecdotal cases of vaccinations…

IG: Of association with vaccination…

CS: Of association, and the CMO’s Report acknowledged…we actually managed to get in into the CMO’s Report…

IG: We have to be very careful we don’t say it’s the cause of something.

CS: Yeah, but I think you are over cautious, there, and you know, we’ve struggled to get these people industrial injury benefits and it really is a struggle and that statement is not going to be helpful…

Concerning a recent statement and report published in the wake of the Judicial Review of the NICE Guidelines on CFS/ME

Concerning a recent statement and report published in the wake of the Judicial Review of the NICE Guidelines on CFS/ME

1 August 2009

In the past two days, various material has been published on the internet in relation to matters arising out of the Judicial Review of the NICE Guidelines on CFS/ME which was heard in the High Court in February, this year. 

This includes a statement issued on behalf of Professor Malcolm Hooper and Margaret Williams.

The statement discloses that in April 2009 a “substantial complaint” was served on the legal representatives for the Fraser/Short legal challenge – a complaint said to be currently before the Legal Complaints Service and the Bar Council Standards Board and the subject of on-going action.

The Statement from Professor Malcolm Hooper has been published by Stephen Ralph, on Professor Hooper’s behalf, on Co-Cure and on ME Action UK site and is dated 29 July 2009.  A second statement issued by Professor Hooper was published on 5 August.

On 30 July, Jane Bryant, Director of the ONE CLICK Group and the Interested Party’s Litigant Friend in the Judicial Review, published a report and commentary on the ONE CLICK Group site. Selected court documents were also placed in the public domain on 30 July which form an integral part of the report and which need to be read in conjunction with this report.

The report reveals that following the Judicial Review hearing, Beachcroft LLP, the solicitors acting for NICE, submitted a Wasted Costs Application which was granted by the High Court and that in June 2009, Leigh Day & Co were served with a Wasted Costs Order of £50,000, payable to the Defendants, NICE.

As some of the issues set out and discussed within the statements, the report and associated court documents relate to the “substantial complaint” and “on-going action” against the legal representatives who had acted for the Claimants, Mr Douglas Fraser and Mr Kevin Short, I am not intending to publish the statements from Professor Malcolm Hooper of 29 July and 5 August, nor the report and commentary by Jane Bryant of 30 July.

I refer readers, instead, to the respective websites of those who have published this material.

The statement appended has been published elsewhere, today, by two individuals who were not involved in either the case for the Defendants or that of the Claimants and the Interested Party, but who wish to clarify their respective positions, in the light of recent events. 

Previous postings around the NICE CFS/ME Judicial Review are archived under Category tag NICE Judicial Review 

COURT JUDGMENT Document for hearing 11 and 12 February 2009 in PDF format here:   Approved NICE Judgment  [1.3MB]

NICE PRESS STATEMENT ISSUED: 13 MARCH 2009

NICE statement on CFS/ME judicial review outcome

http://www.nice.org.uk/media/001/6F/CFSMEJRJudgementStatement130309.pdf

or open PDF here:   cfsmejrjudgementstatement130309

The Expected Review Date for NICE G53 is currently given as August 2010.

——————

For BMJ Rapid Responses to NICE related articles and Letters

See: http://www.bmj.com/cgi/eletters/338/jun04_3/b1805#217952

for Rapid Responses to:

PRACTICE:
Pauline Savigny, Paul Watson, Martin Underwood on behalf of the Guideline Development Group
Early management of persistent non-specific low back pain: summary of NICE guidance

(Tom Kindlon, Information Officer, Irish ME/CFS Association)

and http://www.bmj.com/cgi/eletters/339/jul28_3/b3028

for Rapid Responses to:

LETTERS:
Michael Rawlins and Peter Littlejohns
NICE outraged by ousting of pain society president

(Tom Kindlon, Information Officer, Irish ME/CFS Association; Dr Ellen Goudsmit)

 

Permission to repost 

CLARIFICATION BY ANGELA AND STEPHANIE KENNEDY

In light of recent events and suggestions made elsewhere about both of us, we would like to clarify, collectively, the following:

In 2005, Stephanie, after receiving a ‘CFS/ME’ diagnosis in 2001/2002, was subsequently given a ‘borreliosis’ diagnosis, following test results. As anyone with any knowledge of the problems facing people diagnosed with ‘CFS/ME’, or ‘Lyme’, or ‘borreliosis’ will understand, the political situation is not as simple as being diagnosed with one or another. A useful account, for the layperson, of the rank confusion and contestation surrounding ‘Lyme’, ‘borreliosis’ and ‘CFS’ diagnoses is given in Pamela Weintraub’s book “Cure Unknown: Inside the Lyme Epidemic”, with a foreword by Hilary Johnson, author of “Osler`s Web”. It should be noted that many people, initially diagnosed with ‘CFS/ME’, have subsequently received a diagnosis of ‘borreliosis’ or ‘Lyme’, or other condition or disease.

Stephanie remains severely physiologically impaired by her condition, though there have been small improvements due to certain treatments and a proper diagnosis of a cardiac/neurological condition. We would both like to go on record and say, specifically, that none of this improvement has been as a result of NHS policy or ‘care’. Our collective position remains that the NICE guidelines are inappropriate and dangerous.

In 2007, Stephanie attempted to bring, independently from any other party, a Judicial Review against NICE in respect of their Guidelines for ‘CFS/ME’. Because of the other, apparently partially funded, cases being brought at the same time, Stephanie could not secure Legal Aid and therefore unfortunately could not proceed. Situations such as these are apparently quite common and neither of us hold anyone ‘responsible’ for Stephanie’s failure to secure Legal Aid.

Another clarification we need to make is that we had no knowledge of the Short/Fraser case until it was first announced publicly, although it is clear they had knowledge of Stephanie’s case as her solicitors were mentioned by Professor Malcolm Hooper in his statement. Although we kept the One Click group informed of Stephanie’s intention to bring a JR action, we were not given any information by them, and therefore had no knowledge of the One Click JR case apart from that made public by them.

We are both keen to see accuracy prevail, because we believe there are important advocacy lessons that might be learned from a careful analysis of what has happened. For this reason we may have cause to clarify any further issues raise by public comments made by supporters of the Short/Fraser or the One Click JR action.

Due to family problems at the time, Angela was unable to continue campaigning with the One Click Group. Since April 2006, the trajectory of campaigning that One Click has subsequently taken is therefore not that of Angela’s own, although Angela is aware that some of her work was used by One Click in the response to the NICE guidelines (for example, her “Summary of the Psychiatric Paradigm of ME/CFS” document), subsequent to her having discontinued her association with them. Angela has no problem with her previous work on either NICE or the psychiatric paradigm being used by other advocates, and is happy that this work has been of use to people.

Since leaving One Click in 2006, Angela continues to work in advocacy for people suffering because of ‘psychogenic’ explanations for their illness. For example, she co-initiated a campaign to ensure the APPG on ME were made fully aware of the objections many in the ME/CFS community have to the ‘psycho-social’ approach adopted by most of the ‘CFS/ME’ clinics. This was done in support of other advocates who had been highlighting this problem. In 2008 she, with another advocate, tackled the ongoing misrepresentation of the ME/CFS community that was taking place on Wikipedia, an unfortunate result of unsubstantiated allegations, made in the Gibson Report, about members of the ‘CFS/ME’ community ‘harassing’ a Professor. As a result of their attempts to protect the ME/CFS community from such unsubstantiated allegations being incorporated into the Wikipedia article on Simon Wessely, Angela was herself defamed on Wikipedia, and, falsely implicated as being involved in “personally harassing” Professor Wessely. More information on this subject can be found here in the public-archived dedicated Yahoo Group APK-Papers.

Angela continues to advocate for people adversely affected by the scientific and logical flaws in ‘psychogenic’ explanations for illness. She is currently working on an academic project which she hopes will benefit the ME/CFS, Lyme and other patient communities, a project supported by Stephanie. Both continue to support the work of other patient advocates whenever possible.

We both hope that the above clarifies our respective positions.

ANGELA KENNEDY
STEPHANIE KENNEDY

1 August 2009

Hansard: Vaccine Damage Compensation Debate 8 July 2009

Hansard: Vaccine Damage Compensation Debate: Westminster Hall, 8 July 2009

Dr Ian Gibson, who has recently stood down as MP for Norwich North, is a champion of the mass vaccination of young girls with Cervarix, the cervical cancer vaccine.  Below, I am posting the full text of two important Parliamentary Debates both relating to vaccine damage.

In November 2006, the Group on Scientific Research into ME (the “Gibson Inquiry”) published a 32 page report resulting out of an unofficial inquiry that had been chaired by Dr Ian Gibson. Dr Gibson launched his inquiry, in the summer of 2005, “to assess the progress of scientific research on ME since the publication of the Chief Medical Officer’s Working Group Report into CFS/ME in 2002” with the objective that its findings would “stimulate public debate on the subject of ME and act as a catalyst for increased funding of research”.

The “Gibson Report” can be read here: http://www.erythos.com/gibsonenquiry/Report.html 

Whilst this unofficial document generated much debate amongst its constituency of interest, the ME community, it received little political or media attention.

Despite Dr Gibson’s assurances at the May 2006 Invest in ME conference that his panel intended to consult before launching its final report, copies were emailed out to all MPs and sent to selected ministers and government departments with no consultation process having first taken place. The published document was littered with errors, misconceptions, ambiguities and contradictory statements.  All five national ME patient organisations – Action for M.E., The ME Association, AYME, The Young ME Sufferers Trust, the 25% ME Group, advocates and individuals had called on the inquiry panel to amend and review specific sections within the report –  for as it stood, the document could not be considered fit for purpose. 

On 6 February 2007, Dr Gibson chaired a public meeting, in London, to discuss the content of the report and how it might be used as a campaigning document. At this meeting, Dr Charles Shepherd raised a number of concerns in relation to the report’s content, on behalf of the ME Association and the wider ME community, including a request for factual errors in the section on benefits to be addressed (errors since reiterated by journalists) and around the panel’s views and opinions on the issue of the potential link between vaccinations and the onset of ME.

The GSRME panel disbanded shortly after the public meeting in early 2007.  No amendments to the document were made because the panel “owned” the report and Dr Gibson considered that he had no mandate to amend a document authored by a now disbanded panel. With no consideration of a process for draft consultation and amendments written into the panel’s Terms of Reference and as an unofficial committee, with no accountability to any agency, government department, commissioning body or organisation, the errors, misconceptions and ambiguities within the document remain. 

Page 22 of the “Gibson Report”, states:

“3.3.4 Vaccination

“Vaccination is often blamed for unexplained outbreaks of illness and regularly appears in the media being accused of such. The Group found that there is no strong evidence to link CFS/ME to vaccination and it is unlikely to be a cause…”

Extract from unofficial transcript prepared from audio recording of the public meeting held by the “Gibson Inquiry” panel in London, 6 February 2007:

[Extract picks up towards the end of the first half of the meeting]

Dr Charles Shepherd (Medical Advisor, ME Association) (CS): The second quibble is in 3.34 and what you said about vaccinations. I think your wording there is really going to cause people problems by saying that the Group found there is no strong evidence to link CFS/ME to vaccination and it is unlikely to be the cause. It is, I believe a cause or trigger factor in a significant minority of people with this – I’ve probably got more patients in the UK that anyone else with vaccine induced ME – these are anecdotal cases, OK – I think I’ve probably got about 200.

Dr Ian Gibson, (former MP for Norwich North) (IG): Well, we didn’t want to get into anecdotal things…

CS: I know…

[Ian Gibson talks over Charles Shepherd: ??????????]

CS: …but if you looked at your experts who gave evidence – besides myself, Weir, Pinching, Byron Hyde – all who reported anecdotal cases of vaccinations…

IG: Of association with vaccination…

CS: Of association, and the CMO’s Report acknowledged…we actually managed to get in into the CMO’s Report…

IG: We have to be very careful we don’t say it’s the cause of something.

CS: Yes, but I think you are over cautious, there, and you know, we’ve struggled to get these people industrial injury benefits and it really is a struggle and that statement is not going to be helpful…

———————————————–

Vaccine Damage Compensation Debate: Westminster Hall, 8 July 2009

Hansard

http://www.publications.parliament.uk/pa/cm200809/cmhansrd/cm090708/halltext/90708h0010.htm

8 July 2009 : Column 307WH

Vaccine Damage Compensation
4 pm

Ian Stewart (Eccles) (Lab): I am pleased to have the opportunity to raise this issue today as chair of the all-party group on vaccine damaged children. I preface my remarks, as I always do, by saying that the all-party group supports a public vaccination programme and the protection of workers in the work place. We recognise the role that vaccination plays, and has played, in the reduction and eradication of disease, and like everyone, I want protection against disease for my nearest and dearest, and for everybody else’s too. Continue reading

Preview of the NICE Judicial Review: Margaret Williams, Horace Reid

Royal Courts of Justice

Image | bortescristian | Creative Commons

Preview of the NICE Judicial Review

by Margaret Williams & Horace Reid | 03 February 2009

May be reposted

The Judicial Review of the NICE guidelines on CFS/ME will be held on Wednesday & Thursday 11th & 12 of February 2009. The case is being brought by two adult patients living in the UK.

The constraints of this type of legal challenge (Judicial Review) have already been indicated by the judge who initially granted leave to proceed. Mr Justice Cranston made it clear in June 2008 that a court is not an appropriate forum for medical debate. Arguments will therefore centre on technical issues, such as whether NICE followed its own prescribed procedures.

Much to the disappointment of many patients, there will be no debate on the aetiology, definition, or biomedical status of ME. However in an intense two-day hearing, other crucial issues will be addressed.

Guideline Development Group Bias

It has been the practice of the psychiatric lobby to attempt to pack important CFS/ME committees with their own supporters, to achieve their desired outcomes of CBT & GET. They did this successfully in 1996 with the Royal Colleges report, repeating the trick with the CMO’s committee in 2002. With NICE the liaison psychiatrists have been more subtle. Instead of personally serving on the Guideline Development Group (GDG), it seems that they have managed to stack the group with sympathizers, whilst biomedical ME specialists critical of their approach were excluded. A Freedom of Information request has revealed that Professor Anthony Pinching among others was deeply involved in the GDG selection process.

The many competing interests of the individuals on the GDG (declared and undeclared) may now be subjected to the scrutiny of a High Court judge.

Failure to Declare Conflicting Interests

Take for example the case of Dr. Fred Nye. Incredible as it may seem, as a member of the GDG he was allowed to adjudicate on the quality and relevance of his own research. His RCT, co-published with Powell and Bentall, constituted 25% of the positive evidence base supporting the NICE recommendation on GET. It is difficult to understand how the chairman and fellow members of the GDG could regard him as a neutral and objective participant when the value of GET was being debated.

At some stage Dr. William Hamilton, another GDG member, did declare his connection with the Liverpool Victoria and Exeter Friendly insurers. But NICE failed to appreciate that his appointment gave him an opportunity potentially to import an inappropriate commercial agenda into the clinical area. Many health insurers have subjected ME  patients to sharp practice; their notoriety came to the attention of Dr. Ian Gibson’s committee in 2006. His Parliamentarians condemned the “blatant” conflicts of those individual researchers who mingled  their commercial and clinical interests. In its appointment of Dr. Hamilton, NICE failed to heed these warning voices.

A number of other prominent GDG members failed to declare their close connection with interested parties such as Professors Simon Wessely, Peter White, and Trudie Chalder. Their names and multiple omissions may soon be disclosed.

Scrutiny of the CBT/GET Evidence Base

The Wessely School continually boast that their favoured treatments CBT & GET are “evidence based”; but their claims lack objective validation. All too often they peer review their own work. In the  2006 NHS Plus exercise, for instance, on Occupational Health guidance for CFS/ME, Professors Chalder and White sat in judgment on their own  research, without declaring a competing interest. Their fellow NHS Plus participant, Professor Michael Sharpe, apparently noticed nothing amiss.

It is clear that the court cannot entertain clinical arguments on the merits of NICE-endorsed treatments for any disorder. However the Judge may be asked to consider whether NHS recommendations for 240,000 UK ME patients can justifiably be based on the miniscule amount of evidence supporting CBT & GET. The much-vaunted Wessely  School evidence base will be subjected to impartial public scrutiny.

As AYME has hinted in its website post of 19/1/09, the case has the active support of many leading biomedical researchers, at home and abroad. Dr. Bruce Carruthers, lead author of the Canadian national ME guidelines, plans to be present in court throughout the two day hearing.

AYME & NICE

AYME contemplate two outcomes: the 2007 NICE CFS/ME guideline could be struck down altogether; or it might survive, and be subject to routine revision in due course.

Routine revision, already envisaged, would simply give NICE an opportunity to repeat past errors. The psychiatrists would likely get their way once more, and the legitimate concerns of ME patients would be ignored as usual.

NICE Must Begin Again

Striking down Clinical Guideline 53 is the more desirable option. The present guideline would cease to have effect, and NICE would have to begin again from scratch. Those who allegedly manipulated the composition of the CFS/ME GDG would be exposed and discredited. No- one would dare to resort to such tactics again. If it is proved that the GDG was infiltrated by the commercial interests of the medical insurance industry, and became a pawn of a clinical special interest group, then NICE will be much more circumspect next time. And the CBT/ GET research bubble will be definitively burst.

Patient & Media Support Needed

It is important that ME patients and their families come in person to London next week. The presence of large numbers inside the building, and outside along with TV cameras, will impress upon the court the importance of this issue to a quarter-of-a-million UK ME patients. (Observer spaces inside the designated courtroom will be extremely  limited).

National and local ME charities in the UK and abroad should alert the media to the global significance of this court case, in the long- running medical controversy about ME.

 

High Court Hearing Countdown

Judicial Review NICE Guideline for CFS/ME

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

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

When? | 11th and 12th February 2009

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

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

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

 

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

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

8.17 mins | GBCOne

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

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.

“Infighting”, “bickering” and “squabbles”?

May be reposted

“Infighting”, “bickering” and “squabbles”?

No matter that the arguments have been reasoned and the objections politely expressed, there are a few within our community who are ascribing the terms “bickering”, “squabbling” and “infighting” to the sense of outrage that has been voiced around the internet in response to the publication of the Countess of Mar’s letter, last week – a letter sent not only to RiME but also to others.

They seem intent on undermining the level of concern being expressed about the tone and the content and the implications of this letter by portraying these considerable concerns as though they were nothing more than the sniping and pinches exchanged between fractious siblings on wet November Sunday afternoons. The so called “bickering” and “squabbling”  is evidence, they claim, of a “lack of unity”  within an ME community that has now gone on“the attack” against one of its own.

It is the Countess of Mar’s views and opinions on the NICE “CFS/ME” Guideline and its blanket recommendations for CBT and GET that are being challenged.

It is her views and opinions and their implication for her chairing of private meetings with selected organisation reps to discuss “issues of common concern”  that are being questioned.

It is her views and opinions and their implication for the Judicial Review and the proposed APPG “inquiry” into NHS services that people are worried about.

It is her views and opinions in the context of patronage of four ME organisations and in relation to her role as an advocate that are being scrutinised, and also her relationship with AfME.

But Lady Mar, herself, is not being “attacked”.

Some are questioning whether the Countess’s continued role as a Patron to these organisations is tenable.  Others have said they are disinclined to continue to support these organisations financially while their position on this issue remains unclear.

The 25% ME Group has already issued a statement. We wait to see whether and how ME Research UK and BRAME will respond.

In May, this year, the ME Association and The Young ME Sufferers Trust issued a joint public statement rejecting the NICE Guideline G53 as being unfit for purpose and setting out their positions on GET following AfME’s call for more GET therapists. Do these two organisations also plan to issue a statement in response to the Countess’s views?

People have been shocked and dismayed by the Countess of Mar’s opinions; saddened and bewildered by her position.  They feel badly let down; there is a sense of “betrayal” and they wonder just how in touch she really is with the reality of our situation – these are all valid concerns.  But they are not “attacking”  Lady Mar. 

Those who have responded publicly to this development as being indicative of a volte-face on the part of the Countess or of a lack of real understanding, object very strongly to legitimate and temperate expressions of concern being portrayed as ad hominem attacks and the debate and discussion the issue of this letter has generated being portrayed as “infighting”, “bickering”, internecine “squabbling” or evidence of a “lack of unity” .

Greg Crowhurst is one of those clearly finding this development very difficult to cope with.  He has put out an emotional personal commentary in which he has ripped frenziedly into the ME community at a time when many are still feeling raw and vulnerable and suggests that this development should be welcomed as a timely kick up the arse of a recalcitrant group badly in need of self-discipline that is trying the patience of parliamentarians. 

But Crowhurst fails to declare that he is also a member of the Management Committee of the 25% ME Group. Did he sign up to the 25% Group’s position statement?  As a Trustee of the 25% Group, should he not have clarified first how he stands on this Countess of Mar letter issue, himself, before he let rip?

The portrayal of the ME patient community as a hostile, petulant, irrational, confrontational, needy, infighting, intimidating group incapable of communicating their needs in a rational and moderate manner, whose behaviour discourages researchers, clinicians and politicians from getting involved in the field and results in the reluctance of some organisations to operate transparently has been peddled down the years by certain psychiatrists and psychologists, by those responsible for drawing up job descriptions for CFS clinic therapists, by Professor Peter Denton White assisted by AfME in their Summit Report, by Vivienne Parry and PRIME and by the media.

Now Crowhurst and others within our community are at it, too, but this has not gone unchallenged.

It is a construct perpetuated by Dr Ian Gibson in his BMJ journal paper and by the panel of the GSRME in their “Gibson Inquiry” report.  We’ve seen it from the MEA’s Dr Charles Shepherd, too.  In the last few days, Dr Derek Endlander has sought to suppress constructive criticism of the views and opinions of an individual whose status within parliament should not be used as a shield to protect them from scrutiny. 

Greg Crowhurst must find other, more acceptable ways of assuaging his own discomfort for the developments of the last few days.  Setting out his own position on this issue would be a good start.

Suzy Chapman

23 November 2008

Clarification from BBC Midlands reporter, Michele Paduano

See previous posts:

https://meagenda.wordpress.com/2008/08/29/bbc-news-woman-with-me-takes-own-life/

and

https://meagenda.wordpress.com/2008/08/30/bbc-midlands-video-woman-with-me-takes-own-life-edited/

Today, I have been in contact with Michele Paduano, the BBC journalist who covered the inquest following the death of Worcestershire ME sufferer, Mrs Nicola McNougher. [I append a copy of my questions to Mr Paduano.]

Mr Paduano has clarified that in the lunch time bulletin he was referring to the “Gibson Report” and that it had been his understanding, at the time, that the report was a Parliamentary Report.

The reason for the reference to a “Parliamentary Report” being dropped from the later broadcast was because Mr Paduano wished to include additional commentary on the Swiss clinic’s involvement and because there was insufficient time in which to identify the report by name or to include a direct quote from the report, which was felt might be potentially confusing to viewers.

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

To: Michele Paduano

Sent: Tuesday, 2 September 2008

Re: Video report, BBC News Midlands, Friday, 29 August

Woman with ME takes own life

Dear Mr Paduano,

Thank you for the BBC’s sensitive coverage of the coroner’s inquest into the death of Worcestershire ME sufferer, Mrs Nicola McNougher.

I maintain a website for the political issues affecting the lives of ME patients in the UK and I have received several queries from my readers in response to posting links to the BBC video reports as they became available on 29 August, on the BBC Midlands website at:

http://news.bbc.co.uk/1/hi/england/west_midlands/7588385.stm

 It has been noted that the earlier video [1.32] was later extended to [1.38] and that instead of

“[Mr Logan] echoes a Parliamentary Report that not enough money is going into finding out whether it is an illness of the body”.

the voiceover at 0.59 was edited to:

“…for twenty years, he [Mr Logan] has battled with ME and backs the need for more research into possible physical causes of the condition.”

dropping the reference to “a Parliamentary Report”.

I have received a number of enquiries about a reference to a report and why the reference may have been dropped from the later broadcast, and I should be grateful if you could clarify the following:

1] Could you confirm, please, whether the reference to a report on ME refers to the unofficial document published in November 2006, by an informal committee of parliamentarians brought together as a personal project of Dr Ian Gibson, MP (North Norfolk) and published electronically under the title: Inquiry into the status of CFS/M.E. and research into causes and treatment: Group on Scientific Research into Myalgic Encephalomyelitis (ME) (GSRME) – known colloquially as the “Gibson Report”?

2] Is the BBC aware that the “Gibson Inquiry” was an unofficial inquiry and that the 34pp document which resulted out of this personal project was published by this informal committee, themselves, and that the inquiry was not carried out by a Select Committee or a Standing (now General) Committee, nor resulted out of a commissioned inquiry? The document should not be described as a “Parliamentary Report” as it has no status within either of the Houses of Parliament or within government and does not have the authority of Parliament nor any government ministry or department and that as an unofficial document, it was not published nor distributed by HMSO and is not, therefore, listed on Parliament’s website nor is it available from HMSO in either paper or electronic format. [Confirmed by the Office of the Parliamentary Commissioner, January 2007]

3] Was the reference to a report edited out of the earlier version of the video report because the BBC were aware that the report should not have been described as a “Parliamentary Report” or for other considerations, for example, in order to make time for extending reporting of the inquest and the Swiss clinic?

Sincerely,

Suzy Chapman

me.agenda@virgin.net
https://meagenda.wordpress.com  
http://readmeukevents.wordpress.com