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?

Page 2 

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.

Page 3 

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

Page 4

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.

Page 5

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

Page 6

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;

Page 7

– 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

Page 8

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.

Register of All-Party Groups and Guide to the Rules on All-Party Groups

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

The Register of All-Party Groups [As at 20 October 2009] is here:

http://www.publications.parliament.uk/pa/cm/cmallparty/register/memi01.htm

There are also links at the top of the Register for:

The Nature of All-Party Groups
Purpose and Form of the ‘Register of All-Party Groups’
Purpose and Form of the ‘Approved List’ of Groups
Administration of the Register and Approved List
Complaints about All-Party Groups

The APPG on ME’s current office holders and twenty qualifying members (made up of cross party MPs and members of the House of Lords) can be viewed here:

Register:

http://www.publications.parliament.uk/pa/cm/cmallparty/register/memi01.htm

All-Party Parliamentary Group on Myalgic Encephalomyelitis (ME)

http://www.publications.parliament.uk/pa/cm/cmallparty/register/memi420.htm

Note that the Group details have not been updated since the AGM in July 2009.

The Office of Secretary to the APPG on ME became vacant following the standing down of Dr Ian Gibson from his seat for Norwich North, on 8 June 2009.

The Countess of Mar was elected to the Office of Secretary at the group’s AGM, on 8 July 2009.

Note also that the Chair, Dr Des Turner, MP, announced at the AGM that it was not his intention to stand at the next general election and that therefore a new Chair would need to be found at that point.

Guide to the Rules on All-Party Groups:

http://www.parliament.uk/documents/upload/PCFSGroupsRules.pdf

Page 17

General elections

If your group is NOT on the Approved List: this section applies to your group.

5. Once a general election has been publicly announced we write to groups with information about what action they need to take after the election. In essence, unless the group reregisters within two calendar months from the date when parliament first meets after a general election, it is removed from the Groups’ Register, and from the Approved List (if it is on the latter).8 The purpose of this is to allow groups some continuity from parliament to parliament and to give them time to appoint new officers, enrol new members etc.

6. In order to re-register after a general election a group has to hold an inaugural election of officers (which counts as the group’s first AGM of the new parliament) then complete and return the ‘Application Forms for Cross-Party Groups’, within the 2 month period.

[8] The only exceptions are registered groups funded by Her Majesty’s Government (currently only the British- American Parliamentary Group); such group are not required to re-register.

——————

The APPG on ME website now has PDF copies of Minutes of APPG meetings going back to 31 January 2001 collated at:  http://www.appgme.org.uk/minutes/mintues.html

Clarification regarding membership of the APPG on ME

There have been misunderstandings on some forums that AfME (Action for M.E.), the MEA (The ME Association), AYME (Association of Young People with ME), TYMES Trust (The Young ME Sufferers Trust), The 25% ME Group, ME Research UK, BRAME (Blue Ribbon for Awareness of ME) and RiME (Campaigning for Research into ME) are all members of the All-Party Parliamentary Group on ME.

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

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

But the All-Party Parliamentary Group on ME is not constituted as an Associate Parliamentary Group and therefore only Members of the House of Commons or the House of Lords are permitted membership of the APPG on ME, and only Members of the House of Commons or Lords have voting rights at its meetings.

So the only members of the APPG on ME are parliamentarians.

From the office of the Parliamentary Commissioner:

“Groups are only required to register with us the names of their officers and of 20 ‘qualifying members’. The full membership list, including names over and above that, resides with the group and it is for them to ensure that it is comprehensive and up to date. […] Any MP (ie not just signed up members of the group) is entitled to turn up at any meeting of the group, and to speak and vote at the meeting – unless a subscription is charged in which case voting may be restricted to paid-up members of the group.”

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

http://www.publications.parliament.uk/pa/cm/cmallparty/register/memi417.htm

Under “BENEFITS RECEIVED BY GROUP FROM SOURCES OUTSIDE PARLIAMENT” Action for M.E. and The ME Association are listed as jointly providing the secretariat to the group.

“Action for ME and The ME Association both provides secretarial support (addressing and stuffing envelopes, taking minutes, photocopying).”

As joint secretariat, Action for M.E. and the ME Association undertake the circulation of minutes and agendas for these meetings but they are not members of the APPG Group and their status as organisations and that of their representatives in relation to the group is no different to that of any other organisation that sends a representative to attend these meetings.

Although APPG groups are not permitted to advertise their meetings as “Public Meetings”, meetings of the APPG on ME are held in House of Commons committee rooms and are open to members of the public, that is, national ME patient organisations, representatives of the committees of “local” and regional ME support groups and other interested parties; they are also open to individual members of the ME community and their carers, who can and do regularly attend and contribute to these meetings.

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

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

RiME : unregistered, non membership, run by Paul Davies. Paul Davies attends APPG on ME meetings, sometimes supported by other individuals.

A number of ME sufferers and carers of ME sufferers attend APPG on ME meetings and their names are listed as attendees in the minutes of meetings and their contributions to these meetings are minuted.

I hope this clarifies any misconceptions about policy and proceedings at these meetings and the status of the organisations and individuals who attend them.

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…

APPG on ME meeting: 8 July 2009 and Inquiry into NHS services 1st Oral Evidence session: 9 July 2009

Update: 12 July:

The Inquiry questionnaire for Service Providers is now available from the APPG on ME website here:

http://www.appgme.org.uk/NewQuestionnaire/Questionnaire.html

QUESTIONNAIRE on Service Provision

Below is the questionnaire on service provision sent to PCTs in England and Wales

http://appgme.org.uk/Downloads/PCT_ME_Survey_Final.pdf

or open PDF here on ME agenda:  PCT ME Survey Final

—————————-

1] APPG on ME meeting: 8 July 2009

2] APPG on ME Inquiry into NHS services for people with ME: 1st Oral Evidence session: 9 July 2009

 

1] A meeting of the All Party Parliamentary Group on ME (APPG on ME) took place on Wednesday, 8 July 2009 in House of Commons Committee Room 13.

The meeting, which also served as the Group’s AGM, was attended by MPs Dr Des Turner, Andrew Stunell, Peter Luff and Edward Davey, representatives of national patient organisations, including Action for M.E., The ME Association, The Young ME Sufferers Trust, BRAME, RiME, ReMEmber (The Chronic Fatigue Society) and several members of the ME community.

AGM: Re-elected Office Holders:

Dr Des Turner was re-elected Chair.

Vice Chairs Andrew Stunell and Tony Wright and Treasurer, David Amess, remain Office Holders.

Dr Ian Gibson who had served as Secretary to the APPG on ME committee stood down following his resignation from Parliament in June.

The Countess of Mar* was elected Secretary to the APPG on ME.

Dr Turner warned that a new Chair would be needed as he does not intend to stand again in the next General Election.

Action for M.E. and the ME Association will continue to provide administrative support to the APPG by providing the Secretariat.

Summaries of the meeting, a transcript and minutes will be posted here as they become available. The next meeting of the APPG on ME will take place in the Autumn.

The APPG on ME maintains a website at: http://www.appgme.org.uk

*In October, last year, the Countess of Mar convened and chairs a caucus group – Forward ME. The members of the Forward ME caucus group are: Action for M.E., The ME Association, AYME, The Young ME Sufferers Trust, BRAME, Invest in ME, ME Research UK and ReMEmber (The Chronic Fatigue Society).  The 25% ME Group was a member of Forward ME but has since withdrawn from the group.

A website for Forward ME is maintained at: http://www.forward-me.org.uk  where agendas and minutes of meetings can be accessed.

 —————————-

2] APPG on ME Inquiry into NHS services for people with ME: 1st Oral Evidence session: Thursday, 9 July 2009

It is unconfirmed which national patient organisations have submitted Written Evidence and whether and when these submissions will be released.

Following the first Oral Evidence session, the ME Association published its 3000 word submission.

The full submission can be read on the ME Association’s website.  As this is a long document I am publishing only the Executive Summary, below:

For the full Written Submission go to:  http://www.meassociation.org.uk/content/view/911/161

ME Association submission to the APPG Inquiry into NHS Services for people with ME

The All Party Parliamentary Group on ME Inquiry into NHS services for people with ME/CFS is now calling witnesses to give evidence before it. Dr Charles Shepherd, our medical adviser, answered questions this afternoon (Thursday July 9). Our written submission appears below.

EXECUTIVE SUMMARY

1 ME/CFS covers a wide spectrum of clinical presentations and severity. This has to be appreciated when planning NHS service development and the training of those involved – doctors, nurses, occupational therapists, physiotherapists – in the clinical assessment and care of patients.

2 Everyone with ME should be able to receive an early and accurate diagnosis, normally through the primary care system, along with access to a local hospital based specialist service for further advice on either diagnosis or management, where necessary.

3 The severely affected group require home based management and designated in-patient beds for assessment and management.

4 The MEA submission describes serious deficiencies and omissions in all of the above key aspects of assessment and care.

5 The 2002 Chief Medical Officer’s report into ME/CFS made a number of specific and helpful recommendations regarding service development. The subsequent injection of ring-fenced funding from the Department of Health resulted in a number of new services opening. However, some parts of England still have no local specialist service to whom patients can be easily referred and some of the existing services are experiencing serious problems with funding.

6 The MEA submission highlights positive aspects of the CMO report that have still not been acted on by those responsible for funding and providing NHS services.

7 The 2007 NICE guideline on ME/CFS forms the new basis for clinical assessment, diagnosis and management of ME/CFS patients. Almost all of the charities representing people with ME/CFS believe that the NICE guideline has made the management situation worse because of their ‘one size fits all’ approach, which involves only recommending cognitive behaviour therapy and graded exercise therapy. This approach fails to take into account the fact that large numbers of people with ME/CFS report that these two treatments are either ineffective or cause a worsening of their condition – but this is all that is being offered in the way of management to significant numbers of people..

8 The MEA submission explains why the recommendations on management in the NICE guideline are a major stumbling block when it comes to providing services for people who are not going to be helped by CBT or GET.

Read on here:  http://www.meassociation.org.uk/content/view/911/161

—————————-

Action for M.E. has published a report on the 1st Oral Evidence session

Report of Day 1 of the APPG inquiry into NHS service provision for people with M.E.

Based on notes by Sir Peter Spencer, CEO, Action for M.E.

At 2pm 9 July, the All Party Parliamentary Group inquiry into NHS service provision for people with M.E. met in Committee Room 8 in the Houses of Parliament for its first session of taking oral evidence from witnesses.

Des Turner MP took the chair and was joined by the Countess of Mar, Andrew Stunell MP and Tony Wright MP. The other member of the inquiry team, Peter Luff MP, was unable to attend on this occasion. It is understood that a large amount of written evidence has already been received from patients, patient groups and from various parts of the NHS involved in service provision.

The oral evidence was recorded and the intention is that it will be typed up and made publicly available probably via the APPG website (www.appgme.org.uk ).

The proceedings began quite rightly by taking oral evidence from patients. Three people had been selected from those who had sent in written evidence. They were Cathy Fry from Sussex, Jo [Ed: Joy] Birdsey from Kent and Sally Phillippe from Middlesbrough. The inquiry team invited each person to expand upon their personal experience of the illness by asking questions about the availability of services for their M.E. and the nature of those services.

All three had had significant problems with accessing appropriate care.

In Sally’s case she has still had no help apart from a diagnosis 12 years ago because there are virtually no M.E. services in Teeside – an area with a population of 670,000. Her local Primary Care Trust (PCT) had refused to fund a referral to services outside of their area. Sally explained that she felt very angry not only about her own experience but also on behalf of the large numbers of other people who had also not been given the help they need from the NHS.

Jo had found her local PCT in Kent to be extremely difficult, putting “M.E. at the bottom of the list” and being unwilling to enter into discussion about priorities for treating M.E. patients. She illustrated her own case with a graphic account of a particularly badly delivered set of Cognitive Behavioural Therapy (CBT) sessions.

Cathy encountered great difficulties with getting the help she needed from the NHS in Sussex over many years. She had finally decided to try the Lightning Process (LP) when her GP told her that although he was very sceptical, he had been astonished by the result experienced by one of his patients. Despite her own misgivings, Cathy tried LP and to her own astonishment it has produced such an improvement that she now describes herself as recovered. It was recognised by the inquiry team that LP does not work for all patients and that many are disappointed. It is also not available from the NHS and has to be paid for by the patient – £560 in Cathy’s case.

A common theme that emerged was the difficulty of finding GPs who are informed about M.E. and are supportive. Tony Wight asked the witnesses if it would be helpful for GP practices to have M.E. trained nurses to help GPs with M.E. patients. The response was a cautious yes but only if they are properly trained and are able to undertake domiciliary visits. It was important for patients to have access to the doctor as well as to the nurse.

The second part of the session took evidence from six patient representative groups namely:

  • Peter Spencer – Action for M.E.
  • Charles Shepherd – ME Association
  • Mary-Jane Willows – AYME
  • Doris Jones – 25% Group
  • Christine Harrison – BRAME
  • Jill Piggott – Worcester M.E. Support Group [Ed: Jill Pigott – Worcestershire M.E. Support Group]

Only 45 minutes were left for this final part of the session which had been interrupted several times when MPs and the Countess had to leave for votes in both chambers of the House. Each witness made an opening statement highlighting aspects that they wished to be considered by the inquiry team.

In its written evidence, Action for M.E. has already submitted the report M.E. 2008: What progress? Peter Spencer said that he would wish to cover during the evidence session the key findings and the main recommendations, including those relating to lack of service provision for children and the severely affected.

Our survey showed some improvement in NHS services since 2001 but the rate of improvement has been far too slow.

Peter also challenged the undue weight given by the NHS to Randomised Controlled Trials (RCTs) quoting from the 2005 National Service Framework for Long Term Conditions that “RCTs and other quantitative methods are not  necessarily best suited to research questions involving long term outcome, varied populations with complex needs and assessment of impact on quality of life rather than a cure.”

He also submitted a copy of the views of the Chair of NICE Sir Michael Rawlins, in a speech given in October 2008 which expresses serious reservations about RCTs being put on an undeserved pedestal. He said, “Their appearance at the top of hierarchies of evidence is inappropriate; and hierarchies themselves are illusory tools for assessing evidence.” Sir Michael had also questioned the “generalisabilty” of RCTs whereby limited data from trials is extrapolated to a wide population. Peter stated that this was precisely what had happened with the RCTs which had involved ambulant M.E. patients and that these trials had been given disproportionate weight in drawing up treatments available from the NHS. Other points raised by Peter included:

. how the Department of Health and Ministers remain accountable for the overall delivery of M.E. services when decisions on service delivery are delegated to so many individual Care Commissioners in Primary Care Trusts

. health economics are relevant. The annual cost to the UK of the burden of M.E. was estimated in a study done in conjunction with Sheffield Hallam University in 2002/03 as being £3.4 billion at 2002 economic conditions.

Updating that number for inflation gives estimates of £4.14-£6.4 billion per annum at 2008 prices. This is an area which merits further work to bring it up to date.

Peter also expressed strong support for some valuable points raised by his fellow witnesses, notably:

. the need to investigate the problems that patients still encounter with GPs who are sceptical or ill informed about M.E. – or both.

He illustrated this by reading out anonymous excerpts from patient narratives acquired in Action for M.E.’s 2008 survey:

www.afme.org.uk/res/img/resources/Survey%20Summary%20Report%202008.pdf

Charles Shepherd has recommended that the Royal College of GPs gives evidence at the next session. Action for M.E. agrees

. the value of a National Services Framework specifically for M.E. because this would be enforceable and set standards of care which all PCTs throughout England would have to provide

. the need to engage with the Department of Schools and Education to raise awareness and understanding of the particular problems faced by children with M.E. and their families.

It would be fair to say that all of the patient representative organisations were frustrated by the limited time available for their oral evidence. Nonetheless, a lot of powerful points were made and Action for M.E. and the other organisations have all made substantial written contributions.

On Thursday 16 July the inquiry team meets again this time to hear evidence from the Department of Health as provider of NHS services.

It is hoped that witnesses will include a Government Minister as well as senior figures from the NHS. The session is scheduled from 2-4 pm in Committee Room 18 in the House of Commons.

The general public are able to attend. If you would like to see this piece of history being made, you need to plan to arrive by 1.30 pm to allow time for the security checks and volume of queuing which is unpredictable.

Wheel chair access is available and the House of Commons staff are extremely helpful. Do check the APPG website close to the date to confirm that the location has not been changed. The link is: www.appgme.org.uk  

Ends

—————————-

ME agenda: Notes:

[1] The APPG on ME Inquiry into NHS services for people with ME is an unofficial inquiry being undertaken by an ad hoc committee of parliamentarians. The inquiry has not been commissioned and is not being undertaken by a Parliamentary committee, Select Committee or Standing Committee. The Inquiry and any report that results out of it does not have the authority of either of the Houses of Parliament or any government department.

“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.” Philippa Wainwright, Office of the Parliamentary Commissioner for Standards

[2] It is reported that the CMO, Sir Liam Donaldson, has been invited to attend the second evidence session on 16 July.  It remains  unconfirmed whether Sir Liam has accepted this invitation.

[3] Dr Des Turner, MP, Chair of the APPG on ME who also Chairs the APPG on ME Inquiry into NHS services for people with ME is a Patron to the Sussex & Kent ME/CFS Society.  It is not known whether Dr Turner will remain Patron to the Sussex & Kent ME/CFS Society following his intention to stand down at the next general election.

[4] Connie Nelson has reported via Co-Cure (11 July 2008) that testimony on LP was included in the APPG on ME NHS services Inquiry and queries whether this might be related to the following: 

New adviser

Dr Michael Broughton, who is in charge of the Mid Sussex-based M.E. services, has joined the Sussex ME/CFS Society as its medical adviser. (Brighton Argus, p 15, 27/06/09)

Phil Parker at Swallows
http://digbig.com/5baaxp

Sunday, March 1, 2009 at 8:26PM

Phil Parker visited Swallows Retreat to meet with Dr. Michael Broughton, Consultant Specialist ME/CFS Sussex, and Colin Barton of the Sussex and Kent ME Society.

They joined Linda for a Summer barbecue in Swallows garden, looking at its best in July, and thirty graduates of the Lightning Process for M.E. at Swallows, who enjoyed the opportunity to thank Phil Parker, Developer of the Lightning Process for the difference he has made in their lives.

Some took the opportunity to swim in the pool and the party went on after Dr. Broughton and Phil Parker had to return to their respective clinics.

Dr. Mike Broughton and Phil Parker are now in consultation about further clinical trials beyond the year long one currently being undertaken with Linda’s Lightning Process participants at Swallows.

—————————

Ed: Please note that ME agenda is unable to enter into any correspondence around the Lightning Process with LP practitioners, members of the public, media or others.

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

Next meeting of the APPG on ME: Wednesday 8 July 2009

Three upcoming events this week:

APPG on ME meeting

The next meeting of the All Party Parliamentary Group on M.E., chaired by Dr Des Turner MP, will take place on Wednesday 8 July 2009, Committee Room 19*, House of Commons, 1.30-3pm.

*Please note this change of venue which was previously given as Committee Room 20

The meeting will also serve as the group’s AGM.  Committee officers holders for the next parliamentary year will be elected (Dr Gibson is no longer Secretary to the APPG on ME having recently stood down as MP for Norwich North) and the future work of the APPG on ME will be discussed. No invited speaker for this meeting has been announced.  Members of the public are permitted to attend these meetings (please see my note of clarification around the status of membership of the APPG on ME at the end of this post).

Agenda for Wednesday’s meeting

 

APPG on ME Inquiry into NHS Services for people with ME

There is considerable confusion about the dates and times for these sessions since the APPG on ME website states:

“Evidence sessions are likely to commence 14 July 2009 and a later notice will give details of these.”

But no notice has been issued setting out the dates and times for these oral hearings/evidence sessions by either the APPG on ME committee, the inquiry panel Chair, Dr Turner, or the secretariat to the APPG on ME.

According to unofficial reports, oral hearings for this inquiry are being held, this week, on Thursday, 9 July (the day after the APPG on ME meeting) and last week, invitations were apparently received by some members of the ME community to attend in order to present oral evidence.  No complete list of attendees has been issued.

It is assumed that (as was the case with the oral hearings for the “Gibson Inquiry”) these hearings are intended to be held in public.  Why Dr Turner has failed to issue a notice and why the secretariat to the APPG on ME has failed to chase Dr Turner for one, isn’t clear.

Some readers will recall that in 2006, two of the oral hearings for the “Gibson Inquiry”, which had been intended to be held in public, took place virtually in camera because Dr Gibson’s administrative support staff failed to circulate a notice advertising the dates and times of these meetings and the names of those invited to give evidence.  So very few of those who would have liked to have attended these two hearings were in a position to do so. 

It is disturbing that once again, no agenda for the first of these oral hearings has been circulated by Dr Turner.  There are also concerns that some of those who have made written submissions have received no acknowledgement of their submission, whereas others have. 

If you were hoping to attend the oral hearings please contact Dr Turner, directly, at the email address or through his parliamentary office as I have no information, myself, about the hearing said to be taking place on Thursday this week.  If any information filters out I will post an update.   

Dr Des Turner:  turnerd@parliament.uk   Parliamentary Office: 020 7219 4024

This is, in any case, a poor choice of week for the ME community for the holding of oral hearings/evidence sessions – with the APPG on ME meeting on Wednesday and the Royal Society of Medicine’s “Medicine and Me” series event taking place on Saturday, 11 July.  Attendance of the RSM event is by reservation of seat.  

For information on the RSM “Medicine and me” series event: ME and CFS – Hearing the patient’s voice, Saturday, 11 July see:

http://www.rsm.ac.uk/academ/x2g106.php

———————-

Minutes of previous APPG on ME Meetings

The APPG on ME website now has PDF copies of Minutes of APPG meetings going back to 31 January 2001 collated at:  http://www.appgme.org.uk/minutes/mintues.html

Clarification regarding membership of the APPG on ME

There have been misunderstandings on some forums that AfME (Action for M.E.), the MEA (The ME Association), AYME (Association of Young People with ME), TYMES Trust (The Young ME Sufferers Trust), The 25% ME Group, ME Research UK, BRAME (Blue Ribbon for Awareness of ME) and RiME (Campaigning for Research into ME) are all members of the All-Party Parliamentary Group on ME.

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

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

But the All-Party Parliamentary Group on ME is not constituted as an Associate Parliamentary Group and therefore only Members of the House of Commons or the House of Lords are permitted membership of the APPG on ME, and only Members of the House of Commons or Lords have voting rights at its meetings.

So the only members of the APPG on ME are parliamentarians.

From the office of the Parliamentary Commissioner:

“Groups are only required to register with us the names of their officers and of 20 ‘qualifying members’. The full membership list, including names over and above that, resides with the group and it is for them to ensure that it is comprehensive and up to date. […] Any MP (ie not just signed up members of the group) is entitled to turn up at any meeting of the group, and to speak and vote at the meeting – unless a subscription is charged in which case voting may be restricted to paid-up members of the group.”

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

http://www.publications.parliament.uk/pa/cm/cmallparty/register/memi389.htm

Under “BENEFITS RECEIVED BY GROUP FROM SOURCES OUTSIDE PARLIAMENT” AfME and The ME Association are listed as jointly providing the secretariat to the Group.

“Action for ME and The ME Association both provides secretarial support (addressing and stuffing envelopes, taking minutes, photocopying).”

AfME and the MEA alternate the task of minute taking and circulation of minutes and agendas for these meetings but they are not members of the APPG Group and their status as organisations and that of their representatives in relation to the Group is no different to that of any other organisation that sends a representative to attend these meetings.

Although APPG groups are not permitted to advertise their meetings as “Public Meetings”, meetings of the APPG on ME are held in House of Commons committee rooms and are open to members of the public, that is, national ME patient organisations, representatives of the committees of “local” and regional ME support groups and other interested parties; they are also open to individual members of the ME community and their carers, who can and do regularly attend and contribute to these meetings.

So none of the five national registered membership ME patient organisations listed above are members of the APPG on ME but they attend APPG meetings, send their representives to meetings, and in the case of AfME and the MEA, provide the secretariat function.

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

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

RiME : unregistered, non membership, run by Paul Davies. Paul Davies attends APPG on ME meetings, sometimes supported by other individuals.

A number of ME sufferers and carers of ME sufferers attend APPG on ME meetings and their names are sometimes listed as attendees in the minutes of meetings; their contributions to these meetings are minuted.

I hope this clarifies any misconceptions about policy and proceedings at these meetings and the status of the organisations and individuals who attend them.

A Guide to the Rules on All Party Groups can be downloaded here:

http://www.parliament.uk/documents/upload/PCFSGroupsRules.pdf

APPG on ME Inquiry into NHS services: Patient Questionnaire

The Patient Questionnaire for the APPG on ME Inquiry into services for people with ME has now been posted on the APPG on ME website.  Please note that one of the panel members for the Inquiry, Dr Ian Gibson MP, will presumably have withdrawn from involvement in the Inquiry and also resigned as Secretary to the APPG on ME having recently stood down as MP for Norwich North.

Please note that ME agenda does not support the undertaking of this Inquiry due to its being under resourced and due to issues around its Terms of Reference.

The questionnaire can be downloaded in Word and PDF format from the APPG on ME website.  All enquiries in connection with the Inquiry, itself, or with the Questionnaires to turnerd@parliament.uk .  ME agenda cannot enter into correspondence around any aspect of this Inquiry.  If you don’t understand the instructions please contact Dr Turner.

http://www.appgme.org.uk /

PATIENT QUESTIONNAIRE

APPG INQUIRY INTO NHS SERVICES FOR PEOPLE WITH M.E. / CFS

Please respond to each of the following questions. Answers should be in the format of a self-contained memorandum and the entire response should be no more than 3,000 words.

Respondents typing their submission may answer by filling in this questionnaire and including any detailed answers immediately after each question. If the response is hand-written, each question should be clearly re-stated in the response, with answers immediately following each particular question.

The document must include a very brief executive summary about yourself of approximately 200-300 words. Once submitted, your submission becomes the property of the APPG. The APPG will expect to publish the written evidence it receives. Please notify us if you wish your statement to be anonymous.

Please ensure that your questionnaire is submitted by the 20th of July 2009 to either turnerd@parliament.uk  or

Dr Desmond Turner MP
House of Commons
London
SW1A OAA

(Please go to the APPG on ME website at http://www.appgme.org.uk / for the Word and PDF questionnaires)

RiME: NHS Services Inquiry, Confusion re. Deadlines 27 May 2009

Ed: Note that a website for the APPG on ME (which includes pages for the APPG on ME inquiry into NHS service provision for people with ME) has now been launched.

Action for M.E. and the ME Association, who perform the role of secretariat to the APPG on ME, have yet to issue a notice alerting the ME community to the website.

The website can be found here:  http://www.appgme.org.uk/

The inquiry page here:  http://www.appgme.org.uk/inquiry/inquiry.html

The APPG on ME has yet to publish the Minutes of the 1 April 09 meeting or the promised transcript of the meeting.  No Timeline has been published for the inquiry.

RIME issued the following a couple of days ago:

RiME: NHS Services Inquiry, Confusion re. Deadlines 27 May 2009

Campaigning for Research into ME (RiME)  www.rime.me.uk

NHS Services Inquiry

Confusion re. Deadlines

In Terms of Reference 2 (document in full – www.rime.me.uk – Inquiry folder), it said that written evidence needed to be submitted by June 9.

However, in the Press Release by Des Turner 3/4/09 (on website), it says the cut-off point for the submission of written evidence is 30 June 2009 and that oral hearings are likely to take place in the middle of July.

So, two sources – two different deadlines.

The Press Release also says, ‘A website is being set up for the inquiry, which will include the timetable of activities’.

But, to our knowledge (May 27), there is still no website.  (Ed: See above)

There are rumours that the June 9 deadline is for those who want to attend oral hearings. But without written confirmation from Turner’s office, they are only rumours.

One doesn’t know how written evidence or applications to present evidence should be made ie should it be put on a questionnaire or ad lib?

To try to get clarification, I phoned Turner’s office May 12. I spoke to ‘Nick’ (a p.a) who said he was meeting with Dr Turner that afternoon and would phone me back. No call back that day. Phoned next day. Spoke to another p.a who said he would ask ‘Nick’ to phone me. As of today, I still haven’t heard anything. Tried yesterday (May 26), but got ansaphone. MPs are on Witsun recess this week.

I sense that more and more are getting impatient with the lax approach to procedure.

If the website was to appear on Monday June 1 with details re. June 9 deadline; well, again, it’s all too tight for people with ME.

The above hardly inspires confidence in the process or the APPG.

Does it have any Credibility?

The inquiry committee will consist of four APPG officials – Dr Turner MP, Dr Ian Gibson MP, Tony Wright MP and Andrew Stunell MP; plus two APPG members – Peter Luff MP and Lady Mar.

The comments of five of them (see below) also don’t inspire confidence; leading some of our supporters to say it would be better if the Inquiry didn’t happen, and the current APPG just faded out…

———————

The Gibson Report was signed by two APPG officials – Dr Ian Gibson MP and Dr Des Turner MP; plus APPG member, Lady Mar. It says:

(A) ‘The £8.5m ring fenced by the DOH was used.. to set up 13 new CFS/ME treatment centres nationwide… The Group is 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.

Des Turner has already commented positively on the CMO Report. At the APPG meeting 2/7/08, he said he expected the inquiry would be taking evidence on progress (? – ed.) made since the CMO Report in January 2002 (is Turner not prejudging? – ed.):

Tony Wright MP Vice-Chair of APPG seems to link the ‘CFS/ME’ centres to the causation of ME. On 9/12/04 when APPG Chair he stated:

… With regard to your constituent’s points on CBT and GET, I believe that when these therapies are applied with the agreement of both patient and clinician they undoubtedly benefit some patients…

…I have always been, as Chair of the APPG… , active in calling on Government to provide more resources into finding the causes of ME. I am delighted that under this Government and for the first time government funding has been granted to directly benefit people with ME. The £8.5m is being released through 2004/5 to develop specialist NHS services for people with CFS/ME across England…

RiME’s West Midlands Officer received the following email from APPG Vice-Chair Andrew Stunell MP 21/4/04 (RiME Newsletter 3 Spring 2004 was critical of the CMO Report, York Review 1, GET, CBT):

… I am not clear why you have sent me this.

It may help you in approaching MPs to recognise that some of us have personal or family experience of ME. In my case the treatment system you scorn has been effective, as it appears to have been for quite a high proportion of sufferers.

It is seriously damaging to the case you espouse so passionately to waste time slagging it off, and casting ridiculous aspersions on those who deliver it.

Just think about it. Am I likely to ask a Health Minister to sack people who have provided very effective treatment for a member of my family?

There is a reasonable case for more research, but you don’t provide it. Can I suggest you pass this message back up the line to whoever is in charge of your communication strategy, and get them to change it? Otherwise don’t be surprised if this sort of stuff gets filed under ‘green ink’…

Lady Mar to RiME 13/11/08:

… I am greatly saddened that there is so much hostility to the NICE Guidelines and, specifically, to CBT/GET…

…The CMO, the Department of Health and NICE acknowledge that ME is not a psychosocial problem but, as with any long-term illness, there are psychological aspects to it. In the absence of any treatment, they recommend CBT/GET for a few who might benefit from it. It really is time that we all acknowledge the good bits of any government instigated proposals and that we work together to put right those parts that are unhelpful…

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

27 May 2009