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

Number10 e-Petition response

Number10.gov.uk The official site of the Prime Minister’s Office

e-Petition response

Shortlink: http://wp.me/p5foE-2Ld

Update @11 February

A recent response from the Registrar of Members’ Interests, Office of the Parliamentary Commissioner for Standards also set out the status of All-Party Parliamentary Groups:

“All-Party Groups are informal cross-party groups that are not part of the official structure of the House of Commons. They are not funded by Parliament, nor are they accorded any powers by it.”

http://petitions.number10.gov.uk/MEInquiry/#detail

This petition is now closed, as its deadline has passed.

Submitted by Dave Loomes – Deadline to sign up by: 17 September 2009 – Signatures: 316

Petition update, 05 February 2010

The Prime Minister’s Office has responded to that petition. The response can be viewed here and is also appended.

http://www.number10.gov.uk/Page22366

More details from petition creator

The All Party Parliamentary Group’s Gibson Inquiry into ME in 2006 came to the conclusion that it was highly inappropriate for psychiatrists such as Simon Wessely and Peter White et al to act as advisor’s on illnesses like ME CFS for the Government and the DWP while working as consultants for the medical insurance industry for companies such as UNUM Provident. The insurance industry have a clear vested interest in classifying such illnesses as psychiatric conditions (despite the WHO classification of ME as a neurological condition ICD 10 G93.3) since they have to pay out less on policies.

The recommendations of the Gibson Inquiry called for an appropriate standards body to be set up to investigate these clear and alarming vested interests. This recommendation seems to have disappeared in a puff of smoke?

We the undersigned call for a immediate public inquiry into these inappropriate and blatant conflicts of interest!

Dave Loomes, the Petition Creator

Response published Friday 5 February 2010

http://www.number10.gov.uk/Page22366

E-petition response

We received a petition asking:

“We the undersigned petition the Prime Minister to take up Gibson Inquiry into ME recommendation of a Public Inquiry into vested interests.”

Details of Petition:

“The All Party Parliamentary Group’s Gibson Inquiry into ME in 2006 came to the conclusion that it was highly inappropriate for psychiatrists such as Simon Wessely and Peter White et al to act as advisor’s on illnesses like ME CFS for the Government and the DWP while working as consultants for the medical insurance industry for companies such as UNUM Provident. The insurance industry have a clear vested interest in classifying such illnesses as psychiatric conditions (despite the WHO classification of ME as a neurological condition ICD 10 G93.3) since they have to pay out less on policies. The recommendations of the Gibson Inquiry called for an appropriate standards body to be set up to investigate these clear and alarming vested interests. This recommendation seems to have disappeared in a puff of smoke? We the undersigned call for a immediate public inquiry into these inappropriate and blatant conflicts of interest!.”

Read the Government’s response

The independent inquiry mentioned in your petition stems from a report published in 2006. Neither the Department of Health nor the Department for Work and Pensions (DWP) were involved in producing the report and have no plans to respond to its findings. The recommendations in the report have since been surpassed by updated guidance from the National Institute for Health and Clinical Excellence for the management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME).

Professors Peter White and Simon Wessely hold Chairs in Psychological Medicine at London University. They have an international reputation in the clinical management of and research into several medical subjects, which include CFS/ME. As such, many organisations including government Departments will draw on their expertise. These doctors have been asked to provide factual clinical information about medical conditions and have no interest in the outcome of state benefit decisions or those made by the insurance industry. They have an ethical obligation to provide advice to the best of their knowledge and the Government is confident that they have done this in their advice to Departments.

Professor White has advised DWP in the development of guidance for Disability Living Allowance Decision Makers in a number of psychiatric conditions. He has also provided medical advice on CFS/ME and other related medical conditions. In addition to Professor White, DWP has also consulted with other medical experts with an interest in this condition including a rheumatologist, immunologist, occupational therapist, rehabilitation specialist, and physiotherapist. The guidance was also reviewed and discussed extensively with ME charities, welfare rights groups and their medical advisers who provided many helpful comments, which were included in the guidance wherever possible.

Professor White has provided his independent medical expertise to the insurance industry to help them to understand the medical issues when considering developing policies and deciding claims. As far as UNUM is concerned he has only ever attended one meeting organised by UNUM several years ago, but only as an independent specialist. This involvement in no way compromises the expert medical advice given to the Department, and his insurance consultancy work has always been known to the Department.

Professor Simon Wessely has not been involved in the development of CFS/ME guidance but has advised with guidance developed for some psychiatric conditions. He has served as a member of Dame Carol Black’s working group on employment. As far as UNUM is concerned Professor Wessely has not given advice, but has spoken at two UNUM sponsored medical meetings.

The term Chronic Fatigue Syndrome (CFS) is used to describe an illness that is characterised by physical and mental fatigue and fatigability.

A characteristic feature is fatigue/malaise that follows minimal exertion. People with CFS often describe the fatigue as being of a type and a scale beyond any other they have experienced. The illness may affect both physical and mental functioning, including cognitive function. Accompanying symptoms may include poor sleep, pain, poor concentration and memory, although this list is not exhaustive.

CFS is also known as Myalgic Encephalomyelitis (ME) and post-viral fatigue syndrome. There is some difference of opinion over whether ME is different from CFS; however, most authorities refer to the condition as CFS/ME.

CFS/ME is identified by its symptoms and disabling effects, and by excluding other medical conditions that could explain them. There are no confirmatory abnormal findings on physical examination, nor is there any specific investigation such as an abnormal blood test that is diagnostic. This does not mean that CFS/ME is not a real illness.

The classification of CFS/ME is confusing and controversial since there are five different World Health Organisation categories that could be chosen by a doctor to describe the illness. The Department of Health classifies the illness as neurological (G93.3). Since eligibility to State Benefits depends more on the severity and nature of disability and its effects, rather than the particular diagnosis, this issue is not central to the guidance developed by DWP. For the purpose of Disability Living Allowance the current law means that a claimant cannot be eligible for a higher rate of mobility unless his/her disability is considered “physical.” For this purpose, CFS/ME is classified as “physical.”

 

This petition had not to my knowledge been widely circulated. Had it been brought to my attention with a view to my promoting it on this site, I would have alerted the petition’s creator to the following and suggested that the wording of the petition might be amended.

Had the creators of this e-Petition checked the Register of All-Party Groups before submitting their petition, they would have established the correct name and status of the group which undertook the “Gibson Inquiry”.

The All-Party Parliamentary Group on ME was not responsible for undertaking the “Gibson Inquiry” or publishing the “Gibson Report”.

This unofficial inquiry had been undertaken by an ad hoc group set up by former MP, Dr Ian Gibson, specifically to carry out the “inquiry” because Dr Gibson had been unable to achieve the instigation of the “full”, “high level” and “independent” inquiry he had been seeking within the very short time frame he had set for himself.

Dr Gibson chaired the panel, himself, and it was Dr Gibson who decided whom he would invite onto his panel.

It is the case that the “Gibson Inquiry” panel included some office holders of the APPG on ME and others associated with it. But the inquiry was undertaken independently of the APPG on ME and it did not report to the APPG on ME, in the sense that it was accountable to the APPG on ME, it was accountable only to itself.

The group was registered with the Office of the Parliamentary Commissioner for Standards as “The Group on Scientific Research into ME” (GSRME). 

Most, but not all, groups are on the “Approved List” of All-Party Parliamentary Groups and Associate Parliamentary Groups. The Group on Scientific Research into ME was not on the “Approved List”.

Because of its registration status, under the Rules on All-Party Groups the GSRME group was bound by different requirements for its convening and different rules for its operation, one rule being that it was not permitted to refer to itself as an “All-Party Parliamentary Group”. 

In January 2007, Philippa Wainwright, Office of the Parliamentary Commissioner for Standards clarified that:

“Because the group is on the Register of All-Party Groups it is entitled to use the House emblems (eg the Portcullis) on any of its documents (eg reports, press notices, agendas) and on its website, and it is also allowed to give ‘House of Commons’ as its address on its letterhead.

“However, groups that are not on the Approved List are not allowed to use the terms ‘All-Party’, ‘Associate’ or ‘Parliamentary’ in their title, In the light of what you say, I shall write to the group reminding them of the rules on this point.”

And clarifying the authority of the report that was e-published, only, by the GSRME, in November 2006, Ms Wainwright wrote:

“In parliamentary terms all-party groups have no official status, and are viewed as informal. Their reports therefore have only the authority of those who produce them.”

In terms of status, then, the GSRME sat on the lowest rung of parliamentary groups beneath that of All-Party groups.

The group disbanded in May 2007.

A pro bono website was placed at the disposal of the group which remains online, drifting like the Marie Celeste, here:  http://www.erythos.com/gibsonenquiry/

The APPG on ME’s website is this one:  http://www.appgme.org.uk/

 

The more recent inquiry into NHS service provision for people with ME, chaired by Dr Des Turner (who will be standing down at the election, and thus from office of chair to the APPG on ME) was undertaken by the APPG on ME.

This inquiry has published only an “interim” document and it remains unclear whether it intends to publish a final report before the group is dissolved at the forthcoming election (as all All-Party Groups will be).

If the APPG on ME is to continue beyond the election, a new group with a new chair and a new committee with 20 “Qualifying Members” (parliamentarians) will need to be convened.

As with the NHS service provision inquiry, the “Gibson Inquiry” was an unofficial inquiry.

The report that came out of the “Gibson Inquiry” does not have the authority of either House of Parliament nor any government department; it was not a commissioned inquiry nor the product of a select committee, standing committee or any other Parliamentary Committee.  It had no funding, no dedicated administrative staff or resources and as stated above, was accountable only to itself. 

It is incorrect to refer to the “Gibson Inquiry” as a “Parliamentary Inquiry”, a “government report” or an “official report” since it is none of these: no department or minister was obliged to respond to its recommendations and Dr Gibson and his panel received no responses to their report.

The APPG on ME had planned to try and secure the interest a select committee in its findings and recommendations for its own inquiry into NHS service provision. But only a very brief document has thus far been circulated by the APPG on ME chair (and note, not as a document for comment or discussion).

 

The Secretary to the GSRME resigned the day after the report was published. The group began to disassemble and formally disbanded in May 2007.

The No 10 e-Petition Response notes that:

“For the purpose of Disability Living Allowance the current law means that a claimant cannot be eligible for a higher rate of mobility unless his/her disability is considered ‘physical.’ For this purpose, CFS/ME is classified as ‘physical.'”

The “Gibson Report” got this wrong (and there were other errors in the report).

In January 2007, Dr Gibson held a public meeting in London to discuss the content of the report and how it might be used as a campaigning tool. Dr Charles Shepherd (ME Association) and other national patient organisations and advocates had brought a number of significant errors, misconceptions, contradictions, omissions and ambiguities to the attention of Dr Gibson and what remained of his panel. Dr Gibson argued the toss over the issue of the panel’s misconception over entitlement to higher rate DLA, but he did eventually agree that the error the panel had made in its report would be corrected and that other problems with the report would be attended to. (Unofficial Transcript: Public Meeting of the GSRME, January 07)

But it was not corrected: once the public meeting to discuss the content of the report had been held, Dr Gibson was unable to get his panel to discuss making any amendments and the report remains entirely unamended. This misconception over higher rate DLA by the “Gibson panel” has been reiterated by the press on several occasions.

When drawing up the inquiry’s Terms of Reference, no procedures had been put in place by the panel for dealing with errors in the report; it was published without consultation and sent out to 600 odd MPs, to the Chief Medical Officer and various government ministers, complete with errors, before the ME community and ME patient organisations had had sight of it.

When it comes to inquiries be careful what you wish for.

I may comment at a later date on the content of the Number10 Response.

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

ME/CFS: Classification Issues by Margaret Williams, 3 May 2009

http://www.meactionuk.org.uk/ME_CFS_Classification_Issues.htm

ME/CFS: Classification Issues

by Margaret Williams  |  3 May 2009

Deborah Waroff expresses concern (Co-Cure: ACT: 3rd May 2009) about the serious danger to the World Health Organisation classification of ME/CFS as a neurological disorder posed by the Wessely School. She bases her concern on a recent paper in Psychological Medicine co-authored by psychiatrist Professor Peter White which states: “These data also suggest that fatigue syndromes are heterogeneous, and that CFS/ME and PVFS should be considered as separate conditions, with CFS/ME having more in common with IBS than PVFS does. This requires revision of the ICD-10 taxonomy, which classifies PVFS with ME (emphasis added). In apparent support for their desired removal of ME/CFS (which they refer to as “CFS/ME”) from the neurological section and its reclassification as a somatisation (behavioural) disorder, the authors assert: “A strong relationship between CFS and psychiatric, particularly mood, disorders is a constant finding”

See: Risk markers for both chronic fatigue and irritable bowel syndromes: a prospective case-control study in primary care. WT Hamilton, AM Gallagher, JM Thomas and PD White.

http://journals.cambridge.org/action/displayAbstract?fromPage=online&aid=5446224 

It should be noted that the lead author, Dr William T Hamilton, was a member of the Guideline Development Group (GDG) which drew up the NICE Guideline on “CFS/ME” (CG53) that was published on 22nd August 2007 and which recommended behavioural modification as the primary – indeed the only –management regime for patients with ME/CFS.

In contravention of NICE’s own taxonomy, the Guideline erroneously lumped together two completely different disorders (ME/CFS and neurasthenia/chronic fatigue). GDG member Dr Fred Nye wrote in the Journal of Infection: “We had been advised to adopt an inclusive approach, but this was challenged by the patient representatives who preferred a narrow case definition. A wide definition risks ‘medicalising’ people who are merely tired”. This quotation from Dr Nye shows that, under the chairmanship of Professor Richard Baker (see below), the GDG intentionally amalgamated numerous states of chronic “fatigue”, leading to a meaningless and worthless Guideline for sufferers of ME/CFS and instead concentrating on people who are merely tired (to use Dr Nye’s words) at the expense of the patients who are seriously ill with a chronic neuroimmune disorder.

The Wessely School’s view (which underpinned the Guideline’s management recommendations) is set out in Wessely’s own paper in The Lancet (Functional somatic syndromes: one or many? Lancet 1999:354:936-939), namely that “CFS has been described as part of a broader condition that includes a range of disorders including fibromyalgia, irritable bowel syndrome etc”, about which Wessely’s Chronic Fatigue Service at King’s College Hospital, London, commented in the Stakeholders’ comments on the draft Guideline that such a view “will be well received by many doctors, since it reflects their views and emphasises ways in which we can increase our knowledge of one ‘syndrome’ ”.

This is the heart of the matter, because what NICE refers to as “CFS/ME” is not one functional somatic syndrome but a conglomeration of numerous states of chronic fatigue into which the distinct neurological disorder ME has been erroneously subsumed by Wessely School psychiatrists upon whose work (acknowledged to be methodologically flawed) the GDG relied so heavily.

There has long been international concern about the Wessely School’s determination to ignore the biomedical science and to categorise ME/CFS as a behavioural disorder, and the increasing influence of the Wessely School on the US Centres for Disease Control (CDC) (ME)CFS research programme seems to have caused international experts to speak out about their concerns.

For example, at the CDC (ME)CFS Stakeholders’ meeting held on 27th April 2009 in Atlanta, Dr Staci Stevens advised the CDC that: “Without defining subsets clearly, it will preclude you from meeting your goals. You won’t understand aetiology and you won’t understand clinical management”. Dr Lily Chu also emphasised the need for subgrouping: “Selecting study subjects by using study criteria that have been diluted, such that (they) no longer resemble the illness, will generate erroneous and confusing results”.

The need not to combine heterogeneous populations (as the NICE Guideline does) was set out by world-renowned immunologists Professors Nancy Klimas and Mary Ann Fletcher from the University of Miami in their exceptional (fully referenced) testimony dated 13th September 2008 for the Court in support of the Judicial Review. They said (amongst five pages of evidence): “The overall flavour of the Guideline is to lump together all patients with ‘medically unexplained fatigue’, from relatively mild to profoundly disabling illness and to treat all patients with a standard approach of gradual reconditioning and cognitive behavioural modification. By lumping such a heterogeneous mix of patients, and setting forth very limited diagnostic and treatment recommendations, patients with CFS or ME are left with very limited options, and little hope”. Professors Klimas and Fletcher continued: “In our opinion, combining all states of unexplained fatigue narrowly focuses upon a single, poorly defined symptom (fatigue) and promotes misunderstanding of CFS”. The Statement continued: “(The Guideline) proscribes immunological and other biologic testing on patients with CFS in the UK – despite the evidence in the world’s medical literature that such testing produces most of the biomedical evidence of serious pathology in these patients.

“Equally unfortunate is the GDG’s recommendation for behavioural modification as the single management approach for all ‘medically unexplained fatigue’. This month we participated in the International Conference on Fatigue Science in Okinawa, Japan. Dr Peter White of the UK presented his work using behavioural modification and graded exercise. He reported a recovery rate of about 25%, a figure much higher than seen in US studies in CFS, and even if possible, simply not hopeful enough to the 75% who fail to recover. The lumping of a heterogeneous population with no biological testing funded hampered this study”. The Statement continued: “In summary, we support your challenge to the GDG Guideline. We hope any future revision acknowledges the importance of immune, autonomic and neuroendocrine influences in this illness”. The Statement concluded: “We would also ask that the Court consider the far-reaching impact of a Guideline that fails to look forward or even at the present when describing the literature and the causes of this disabling illness”.

Along with approximately 60% of the Claimants’ evidence, this testimony was entirely disregarded at the High Court Hearing.

It is clear from Professor Baker’s Witness Statement (see below) and from Dr Nye’s letter in the Journal of Infection that the GDG’s intention from the outset was that the Guideline should cover a whole range of patients suffering from “medically unexplained fatigue”, which is classified in the ICD-10 at F48.0 under Mental and Behavioural Disorders, a section from which ME is expressly excluded by the WHO, yet the Guideline specifically claims to include ME. The GDG thus failed in its remit to produce an aid to diagnosis for ME/CFS. As Chairman, Professor Baker must bear responsibility for this failure.

Moreover, under the chairmanship of Professor Baker, the GDG specifically refused to accept the WHO classification of ME/CFS as a neurological disorder.

On 24th March 2003 Andre L’Hours from the WHO confirmed that it is mandatory for all member states (which include the UK) to use the ICD-10 codes, and NICE’s own Communications Progress Report 8 of September 2002 also stipulates that it is mandatory for NICE to use the ICD-10 codes. This evidence was provided for the GDG and the High Court but was unheeded.

The alleged reason for the GDG’s refusal to accept the ICD-10 classification was proffered in the First Witness Statement (he provided two Witness Statements) of Professor Richard Baker on behalf of NICE, whose First Witness Statement was discussed at length in Court (whereby it entered the public domain and can therefore be quoted publicly):

“The claimants argue that the GDG should have recognised the classification given in ICD-10, which lists ME under Section G ‘Diseases of the Nervous System’. The GDG acknowledged this classification but considered it best not to adopt it”. Quoting from page 68 of the Full Guideline, Professor Baker’s First Witness Statement continued: “ ‘The World Health Organisation (WHO) classifies CFS/ME as a neurological illness (G93.3), and some members of the GDG felt that, until research further identifies its aetiology and pathogenesis, the guideline should recognise this classification. Others felt that to do so did not reflect the nature of the illness and risked restricting research into the causes, mechanisms and future treatments for CFS/ME’. As indicated in the extract above, there were two reasons why the GDG did not accept the ICD-10 classification. Firstly, there was not enough agreement that it could be said with sufficient certainty that CFS/ME was a neurological condition. Secondly, given the uncertainty surrounding how the condition is caused and why it progresses in the way that it does, the GDG did not want the Guideline to have the unintended consequence of steering future research down a particular course. The concern was that had the Guideline adopted the ICD-10 classification, that would have made it harder to obtain funding and approval for research into non-neurological factors causing and perpetuating CFS/ME (and) such a consequence would have been highly undesirable” (emphasis added).

Professor Baker’s First Witness Statement continued: “In addition to code G93.3 for ME, ICD-10 includes a code F48 – neurasthenia – which describes symptoms typical of CFS/ME and is referred to elsewhere in ICD-10 as covering ‘fatigue syndrome’. Furthermore, the classification G93.3 refers only to ME, and not to CFS”.

Thus Professor Baker confirmed that the management recommendations in the Guideline are based on the feelings of some members of the GDG, thereby ignoring the WHO taxonomy and the concerns of those GDG members who believed that the ICD-10 classification should have been adopted in the Guideline, as well as ignoring the pressing needs of patients with ME/CFS to receive a correct diagnosis and appropriate support.

Given that the WHO has classified ME as a neurological disorder for 40 years, there is abundant international agreement that it can be said with certainty that ME is a neurological condition. There may not have been sufficient agreement amongst GDG members that ME/CFS is a neurological condition, but there is absolute certainty that ME/CFS is a WHO classified neurological disorder.

The NICE Guideline claims to represent the best available evidence. The best available evidence is that since 1969, ME has been an internationally classified neurological disorder (WHO ICD-10: G93.3). The best available evidence is that since 2003, ME has been classified as a neurological disorder in the UK Read Codes used by GPs (F286), and that ME is included in the UK National Service Framework for long-term neurological conditions. The best available evidence is that the UK Department of Health accepts that ME is a neurological disorder, and that the UK Chief Medical Officer accepts that ME is a neurological disorder with long-term effects on health alongside other illnesses such as multiple sclerosis and motor neurone disease. The best available evidence is that there are now over 5,000 peer-reviewed scientific papers demonstrating that ME/CFS is not a behavioural disorder.

As the UK is a member of the WHO World Health Assembly, the GDG does not have the autonomy to reject the formal WHO classification of ME/CFS as a neurological disorder and, as chairman, Professor Baker could have been expected to direct his GDG appropriately. It seems that, influenced by the Wessely School, he failed to do so.

By the wording of that paragraph in his First Witness Statement (ie. “non-neurological factors causing and perpetuating CFS/ME” ), Professor Baker seems to imply that he knows that non-neurological factors (ie. behavioural factors) cause and perpetuate “CFS/ME”, but there is no evidence whatever to substantiate his professed knowledge on this issue. There is however, an extensive Wessely School literature asserting that they do, which is based not on scientific evidence but on Wessely’s own somatisation hypothesis (adopted by the GDG and whose previously published papers already supported such a notion) that has been stringently challenged by international ME/CFS researchers in the peer-reviewed literature.

NICE was even admonished by the House of Commons Health Select Committee which, in its First Report of Session 2007-08 (Volume 1: 29), stipulated: “NICE should not recommend interventions when the evidence is weak”.

NICE itself conceded that in the case of “CFS/ME”, the evidence was weak. By letter dated 26th January 2006, a NICE Communications Executive (Sarita Tamber) confirmed: “With regard to the CFS/ME guideline, because of the lack of evidence it was decided to use formal consensus methods with the GDG. As you are aware, NICE guidelines are based on research evidence but NICE is aware of the lack of evidence on CFS/ME”.

The revelation from Professor Baker seems clear enough: had the GDG adopted the ICD-10 classification, it would have made it harder to obtain funding for research into “non-neurological factors” (ie. “behavioural factors”). In other words, the Wessely School psychiatric gravy-train would have hit the buffers, a gravy-train that has been funded by the State, including the MRC alone to the tune of £3 million since 2002, which is approximately 91% of the MRC’s total grant spent on “CFS/ME”. It seems that the dominant Wessely School GDG members clearly wanted to ensure continued funding for their studies on “behavioural modification” in CFS/ME.

Underpinning it all is the publicly stated intention of the Wessely School that the next revision of the Diagnostic and Statistical Manual (DSM-V) should include “CFS/ME” as a somatoform disorder (a category that they wish to re-configure).

If NICE had accepted the disorder as neurological, it would have thwarted the Wessely School’s objective of eradicating ME and of capturing “CFS/ME” – with their stated intention of eventually dropping the “ME” — as a psychiatric disorder (with advantageous implications for their paymasters in the medical and permanent health insurance industry), so it seems that their supporters on the GDG (including Dr Hamilton, who is Chief Medical Officer of two major medical insurance companies, the Exeter Friendly Society and the Liverpool Victoria and who also is employed by Friends Provident, a fact that he now admits he failed to declare to NICE) did not allow it to happen.

Given that it was as long ago as 28th June 2001 that Andre L’Hours confirmed that the WHO has no plans to remove ME/PVFS/CFS from the section on Disorders of the Brain and transfer it to a psychiatric classification (confirmation of which was again supplied — in writing — by Dr Robert Jakob of the WHO on 5th February 2009 in relation to the forthcoming ICD-11), it seems sinister that the Wessely School continues unrestrained by any vestige of accountability or professional censure in its determination to disregard and over-rule the WHO to the detriment of many thousands of desperately sick patients. If this were to occur with patients suffering from any other organic disorder, be it cancer, multiple sclerosis, lupus or renal failure, a clinician who resolutely refused to accept the abundant evidence of such a disorder and who simply insisted that the patient change their thought processes might face disciplinary proceedings. It is incomprehensible that no such strictures are brought upon the miscreant Wessely School and upon those clinicians who support them.

The Gibson Report of November 2006 called for an inquiry by the appropriate Standards body into the blatant conflicts of interest of certain members of the Wessely School but, like everything else to do with ME/CFS, this call has gone unheeded.

Quite apart from the issue of correct classification, the evidence continues to mount that ME/CFS is essentially a neurological disorder.

For example, a review of the neurological components of ME/CFS is clear. Although this review was published in 2008 (i.e. after the Guideline was published in August 2007), only four of the 47 references cited were not available to the GDG:

“Additional evidence of an underlying neurological disorder requires appropriate neurological evaluation. Available neuroimaging data not only show differences in morphology between patients and controls, but also indicate the brain’s response to mental fatigue. Evidence of abnormal perfusion in the brain has led to research on brain metabolism (which) found a significant hypometabolism in the right mediofrontal cortex and brainstem of patients. In summary, an increasing amount of evidence is becoming available to elucidate the close relationship between (ME/CFS) and the CNS. The focal point of (ME)CFS research should be transferred to the CNS and exploration of the neuromechanism of (ME)CFS”. (“Chronic Fatigue Syndrome and the Central Nervous System”: R Chen et al; Journal of International Medical Research 2008:36:867-874).

Given the significant amount of evidence that ME/CFS is a neuroimmune disorder, and given the fact that NICE is funded by — and responsible to — the Department of Health, it is irrational for NICE to refuse to accept the WHO international classification ICD-10 G93.3 when the Department of Health accepts it. This refusal may indicate the stranglehold exerted by the Wessely School and the medical and permanent health insurance industry upon both NICE and the MRC, of which there is abundant evidence not included here.

In their testimony for the Judicial Review, Professors Klimas and Fletcher pointed out that: “The Guideline affects not only the UK but is widely quoted throughout the EU, and has influenced health care policy in Norway, Sweden, and the Netherlands”.

At the CDC CFS Stakeholders’ meeting on 27th April 2009 in Atlanta, Dr William Reeves (who is on record as saying in his Introduction to the meeting that the CDC has had four CFS programme reviews in the last four years, the most recent being in November last year) said: “Dr Peter White participated. Dr Peter White is a representative of, I think, the only country and Ministry of Health in the world that has developed a comprehensive programme for diagnosing, evaluating, and treating CFS. There may be many comments as to whether it is the best, but it is a national health service, which takes this very seriously. And (they) have tried to implement on a national level something” (with grateful acknowledgement to http://www.cfidsreport.com ).

It is Peter White who is striving to get ME removed from the neurological classification of the ICD and reclassified as a behavioural disorder and who lumps together undefined states of “medically unexplained chronic fatigue” that he believes should be uniformly managed by cognitive restructuring that is intended to convince sufferers that they are not sick, merely that they are just not active enough because of their aberrant illness beliefs.

At the same CDC CFS Stakeholders’ meeting on 27th April 2009, Professor Klimas was clear: she urged the CDC to consider “the role of other chronic persistent re-infection in this disease. You just can’t say that you are not going to look at infectious disease. If there is this much immune activation, there is either a pathogen or an autoimmune disorder” .

The Wessely School (including Peter White), NICE and the UK Courts are not listening.

It seems that, by their consistent denial of the documented pathology and by means of their so-called “cognitive re-structuring techniques”, the Wessely School is assisting the State to undermine sick people’s rational thoughts, feelings and legitimate beliefs about their illness for political, social and economic reasons.

Deborah Waroff is right to be concerned. She is not alone.

Margaret Williams

3 April 2009

RiME: NHS Services Inquiry 22 April 2009

Permission to Repost

Campaigning for Research into ME (RiME)

NHS Services Inquiry

Before the summary of last APPG meeting plus Press Release (below), a few comments:

Note that the inquiry is about ‘ME/CFS’. The services descriptions in many parts of the country (see RiME Website, Clinics folder) demonstrate a wide remit re. patient controls. Not surprising given they are the product of the CMO Report, which was affected by work to do with a loose definition of CFS (see my comments at meeting).

So, this is not about ME as described by G93.3 or Canadian Criteria.

RiME will submit evidence but says, ‘in the context of ME does the project have integrity or credibility?’

The Chair of the APPG seems to be the person currently leading the inquiry. The APPG recognises G93.3 but the Inquiry, it appears, will be on something different.

If the APPG did have integrity and credibility, would it not be fighting the corner of ME patients; and if it were, would it not be critical of the clinics and pushing for biomedical ME Research?

Instead, we have the Inquiry. Already, people are commenting on it within a wider political context. Three on the committee (see below) are members of the Labour Party. A common question appears to be, ‘will it try to concoct a favourable report and publish it in the run up to the next election?’

RiME Summary of APPG Meeting 1/4/09

1.20 pm Terms of Reference 2 handed out by Heather Walker (AfME).

1.30 Meeting starts. Minutes becoming too detailed – Des Turner MP (Chair). Transcript will be available for this meeting soon. Minutes agreed after a couple of corrections.

Turner: Website with Inquiry details will be online next week.

Alan Golds says name of illness is important: CFS is not ME and this is at heart of issue. Turner says that’s debatable.

Jane Colby said ME must be separate from CFS.

Doris Jones says NICE guidelines naming of illness are at odds with WHO.

Annette Barclay asked about reporting on adverse reactions to treatments like CBT and GET in the NHS. She asked if this was covered in the ToR. Yes, said the Chair.

Jo Dubriel asked about drop-outs re. services.

Kirsty Heyward (Royal College of Nursing) said a study paper was under review (she spoke about different methods for measuring outcomes in CFS research) and will be published on PRIME website.

Sue Waddle asks if will there be anonymity for those giving evidence to inquiry. Turner says yes.

Joy Birdsey said parents feared child services.

Paul Davis RiME said that ME patients are boycotting the clinics because they are not about ME. I offered to read out anecdotes from ME patients in Yorks but Turner declined. The clinics are a product of the CMO Report 2002 and there is a road map: CMO Report > York Review 1 > a certain school of psychiatry. The toothpaste is now out of the tube. If I remember correctly, Turner said something about going with what we have.

Later, I mentioned that Sue Pemberton (OT Leeds Clinic) has done a survey saying 90% of patients had been helped by the service. Comments from an ME patient (1) the majority of attendees probably didn’t have ME (2) the clinics are dumping grounds for GPs who have patients with unexplained symptoms (3) what does help mean; little more than a chat perhaps?

Heyward says timetable for inquiry is too short. Doris Jones agrees. So did I (Paul Davis). Turner says Inquiry will be announced in press.

Andrew Stunell MP says inquiry will have limitations and people should not get their hopes up.
Peter Luff MP says report must be ready by next election (Stunell indicates May 2010).
Dr Derek Pheby has reservations about timetable.
Jill Cooper mentions how unhappy she is about the Milton Keynes conference this month (A).
Heather Walker (AfME) says that NICE guidelines might become mandatory.
Birdsey says that she knows of GPs who feel the government is interfering with their work.
Pheby – NICE guidelines are a curate’s egg.
Jones says that 88% of groups she contacted were against the NICE Guidelines.
Cooper says diagnosis is too wide and as a result, the illness is not taken seriously.

Sue Waddle said, if I remember correctly, (1) the Gibson Report was good but went up in a puff of smoke (2) the CMO Report was good but hadn’t been acted on.

Turner said that written evidence for Inquiry will be taken from patients and providers.

Next meeting: 2pm, 24th June 2009 – Turner. 14.55 Meeting ends.

(A) A paper was sent in by West Midlands ME Groups Consortium raising concerns about another NHS CFS/ME training conference in Milton Keynes; it is about mental health issues and getting patients back to work. It urged the CNCC to consider more robust diagnostic criteria ie Canadian and G93.3.

Disclaimer: the above is based on scribbled notes and I cannot guarantee 100% accuracy. It is confined to matters pertaining to Services Inquiry and related issues.

————————————-

APPG Press Release 3/4/09: NHS Inquiry

Dr Des Turner MP, Chair of the APPG on ME, has today issued a press release, launching an inquiry into NHS service provision for people with ME/CFS in England.

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

Announcing the terms of reference, Dr Turner said:

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

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

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

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

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

Until the website is activated, correspondence to: Dr Des Turner MP, 179 Preston Road, Brighton, BN1 6AG.

————————————-

Overview:

Meeting: It was a bit better in that several raised concerns about nomenclature and classification; too, there was some criticism of the NICE Guidelines.

I don’t think it helps if people publicly express support for the CMO and Gibson Reports (certainly not in the context of services):

The CMO Report 2002 was not about G93.3 ME. It associated ‘CFS/ME’ with (1) inactivity and activity avoidance to be combated via GET (Section 46) (2) faulty belief systems to be combated via CBT (48). These types of treatment are now being implemented via the clinics.

The Gibson Report 2006 said (A) that it was extremely pleased with the advent of these centres and we hope they will be maintained and rolled out (5.1.) (B) that they were to his (Wessely’s) model (3.2) (C) that it was impressed with the work of Trudie Chalder (4.3) saying this treatment (CBT) has a role to play in treating CFS/ME.

Press Release – Inquiry: First, one has to get comments in re. survey by May 5. I’m going to take a short rain check on this (and commenting on Terms of Reference 2). Enough for the moment. RiME will post again, shortly, and give some space to inquiry on website.

Paul Davis

22 April 2002

 rimexx@tiscali.co.uk    www.rime.me.uk

Concerns about tightness of deadline for NHS services inquiry draft Terms of Reference consultation

Concerns about tightness of deadline for NHS services inquiry draft Terms of Reference consultation

Yesterday, the Secretariat to the APPG issued an announcement regarding a deadline for consultation on the draft Terms of Reference for the proposed APPG Inquiry into NHS Services. 

I am most concerned that a draft Terms of Reference was presented at the APPG on ME meeting on 8 October without any prior consultation with the ME community over this proposed inquiry’s scope and objectives, and that having  only yesterday announced a period of wider consultation on this document that the deadline for comments/responses has been set for just ten days away (14 November).

Yesterday’s announcement by the Secretariat can be read here

A PDF and text version of the draft Terms of Reference can be read here

The next meeting of the APPG on ME will possibly take place in early December.

Today, I have sent the following email to the Secretariat of the APPG on ME, CCd to Dr Des Turner, Chair APPG.  I have forwarded a copy to Paul Davis, for RiME’s information:

 

From: Suzy Chapman
To: Heather Walker Heather.Walker@afme.org.uk 
Cc: Dr Des Turner turnerd@parliament.uk; Dr Charles Shepherd charles.c.shepherd@btinternet.com;
Tony Britton tbritton02@yahoo.com; Sir Peter Spencer peter.spencer@afme.org.uk

Sent: Wednesday, November 05, 2008 12:04 PM
Subject: Re: APPG Inquiry into NHS Services: deadline for comments on Terms of Reference

Re: APPG Inquiry into NHS Services: deadline for comments on Terms of Reference

Dear Ms Walker,

As I am currently unable to attend meetings of the APPG on ME in person, due to carer and business commitments, I rely on the Minutes of APPG meetings.

The Minutes for the October meeting have yet to be published. I therefore refer to the unofficial summary of the 8 October meeting, compiled by Dr Charles Shepherd and published by the MEA on 10 October, and on the reports of individuals who did attend this meeting.

In his summary of 10 October, Dr Shepherd had reported:

“This document [draft Terms of Reference for NHS services inquiry] was circulated to the meeting and it was agreed to accept this in principle subject to minor amendments..”

There was no reference in Dr Shepherd’s summary to there being any wider consultation on the draft Terms of Reference envisaged beyond the APPG meeting that had just taken place, nor any indication of a timescale for any wider consultation with the ME community nor any information about to whom and through what means comments/responses should be submitted.

However, in the official Secretariat notice published yesterday (4 November), by both the MEA and AfME, it states:

“The deadline for comments on the draft terms of reference for the APPG Inquiry into English NHS service provision is Friday 14 November 2008.”

and:

“A number of those present welcomed the Inquiry and the meeting agreed to accept the draft terms of reference in principle subject to minor amendments. The Chair, Dr Des Turner, said that any minor amendments should be sent to the Secretariat by mid November – a date now confirmed as the 14th.”

I have a number of concerns:

I am given to understand that at the APPG meeting the draft Terms of Reference were agreed, subject to post amendment, by Dr Charles Shepherd and Sir Peter Spencer; that Sir Peter Spencer is reported as having expressed a wish to produce some written amendments in the days following the meeting.

But it would appear that a decision has subsequently been made to open up the consultation to the wider ME community and interested parties beyond those present at the APPG meeting on 8 October and beyond any minor amendments resulting out of discussion at that meeting and resulting from Sir Peter Spencer’s further scrutiny of the document.

I am concerned, firstly, that since the announcement of this decision was published only yesterday (4 November) that there is only a ten day period in which comments/responses can be tendered.

1] I do not consider ten days to be an adequate period of notice for the ME community’s consideration of this draft Terms of Reference.

2] It is by no means clear what is meant by “minor” amendments and this needs clarification, otherwise it is likely that the ME community will consider that the Secretariat and/or Dr Turner are seeking to restrict the scope of this “consultation”.

3] The announcement issued yesterday states:

“Further information will be posted as the processes, procedures and resourcing are finalised.”

How can the draft Terms of Reference be adequately considered by the ME community when many of the processes and procedures through which the inquiry would fulfil its aims have yet to be defined?

4] Mindful of the situation which arose in late 2005 around the Terms of Reference for the “Gibson Inquiry” and the concerns, then, over tight time schedules, it is very disappointing that the Secretariat has not negotiated with Dr Turner, on behalf of the wider ME community, for a more reasonable time-frame for comment and discussion of this document.

A ten day period in which to tender comments/responses on “minor” amendments will be seen as a tokenistic gesture and little more than a nod in the direction of “consultation”.

5] I consider that the official minute of the APPG on ME meeting on 8 October should be published as soon as possible and not left until a couple of weeks or less before the next meeting of the APPG, proposed for December.

Sincerely,

Suzy Chapman

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