APPG Inquiry: Is this what we want and do we want it now?

APPG Inquiry: Is this what we want and do we want it now?

On 4 November, APPG on ME joint secretariat (AfME and the ME Association) announced a ten day deadline for comments on a Draft Terms of Reference for the APPG’s proposed inquiry into NHS service provision for people with ME.

The Draft Terms of Reference can be read here:

This inquiry had been proposed at the July meeting of the APPG by chair, Dr Des Turner. A committee has yet to be announced but it’s understood that Dr Turner MP, Dr Ian Gibson MP, Dr Richard Taylor MP and the Countess of Mar have already committed to involvement as inquiry panel members.

This is an ambitious project and the APPG will have only limited resources to draw upon. As with the “Gibson Inquiry”, there will be no funding and no dedicated administrative or research staff other than the staff who work in MPs’ own parliamentary offices. Lack of resources had a major impact for the administration of the “Gibson Inquiry”. How will this inquiry avoid the problems that beset the GSRME?

Well, the APPG has talked of NHS input from the staff in Lord Darzi’s office who would undertake the collection of data. Dr Charles Shepherd has suggested that drug companies might be approached as potential sources of funding. (Perhaps Dr Shepherd was thinking here of the pharmaceutical company Roche, with whom he has recently had discussions?) How do you feel about these suggestions?

Since July, caucus meetings have been held between Dr Des Turner, Dr Charles Shepherd (MEA) and representatives of AfME to discuss the project. It’s understood that Heather Walker of AfME put together the Terms of Reference.

But what the APPG did not do is to ask the ME community whether it wants an inquiry into NHS service provision at this particular point in time or whether, with the High Court Judicial Review of the NICE Guideline on “CFS/ME” listed for early next year, it would be judicious to wait until after the Court Hearing in February has taken place?

Nor has it asked us if we do want an inquiry now, what that inquiry should be looking into?

There is much disquiet about these Terms of Reference and about the project, as a whole. But with only ten days notice in which to prepare responses (for which there is a caveat of “minor amendments” only) and with so many unknowns relating to the processes and procedures through which this project would achieve its objectives – whatever those objectives might be – the ME community has been caught on the hop.

There have been calls for an extension to the deadline.

Letters of concern to the APPG from Greg Crowhurst, Invest in ME and Ciaran Farrell can be read here on ME agenda. RiME’s response will be published on ME agenda in the next day or two.

Read what they have to say.

The deadline for comments has now passed but if you have concerns about any aspect of this inquiry and its Terms of Reference as they currently stand don’t let that discourage you from writing to the secretariat – do it anyway.

I submitted the following comments on 12 November:

To APPG Secretariat:;;;  


12 November 2008

Draft Terms of Reference for APPG Inquiry into NHS service provision

I have the following comments to make in response to the Draft Terms of Reference for the proposed APPG Inquiry into NHS service provision:

1] I am concerned that this document was presented by Dr Turner at the APPG on 8 October and that agreement of these Terms of Reference was sought at the meeting, itself, despite the time constraints and the need of some of those present for adequate time for proper scrutiny and consideration of the document.

2] AfME and the ME Association provide a joint secretariat function to the APPG. However, the status of AfME and the ME Association, as patient organisations, is no higher in relation to the APPG than that of other patient organisations who provide representatives to attend APPG meetings.

I am concerned that meetings have been held between Dr Turner and representatives of the ME Association and AfME to discuss the drawing up of these Terms of Reference and that other patient organisations had not been consulted over the scope, aims and objectives of this proposed inquiry and its Terms of Reference, prior to their presentation by Dr Turner at the October APPG. I consider that a consultation exercise over the inquiry’s aims and objectives should have been carried out first.

3] I am concerned that Dr Turner evidently did not consider that wider consultation would have been appropriate. I consider the Draft Terms of Reference should be withdrawn until wider consultation over this proposed inquiry has taken place.

4] Having presented a Draft Terms of Reference at the 8 October meeting, I am concerned that agreement of this draft was restricted to those present at the meeting and “accepted in principle by the APPG subject to minor amendments” and that it has not been clarified whether these “minor amendments” include amendments put forward at the meeting, itself, and if so, what these were, or amendments which were anticipated to be submitted subsequent to the meeting by Sir Peter Spencer and/or others present. Nor has it been clarified when and through what process any subsequent amendments to the draft as it stood at 8 October are to be discussed and accepted for incorporation or rejected before a final version is adopted.

With reference to the notice issued by the secretariat on 4 November, the term “minor amendments” needed clarification.

AfME secretariat has since stated that “no wider consultation [of the draft TOR] was envisaged”. If that were the case, what was the purpose of issuing a public notice on 4 November inviting the submission of comments if the draft was not out for consultation? This appears to be a tokenistic nod in the direction of “consultation” especially given the tightness of the deadline which was not announced until 4 November and the receptivity to only “minor” amendments to the draft, as it stands.

5] The notice issued on 4 November states:

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

How can a draft Terms of Reference be adequately considered within the context of the project as a whole, when some of the processes and procedures through which this project would fulfil its aims have yet to be defined and when potentially contentious issues such as who the APPG may be considering approaching to provide administrative assistance, funding or other resources have not been publicly debated, since no opportunity has been provided by the APPG for such matters to be discussed beyond the APPG as part of a wider consultation process over the project as a whole?

6] I am concerned that the Draft Terms of Reference, as presented at the meeting on 8 October, were published by the ME Association on 10 October within their own unofficial summary of that meeting but that the official minute of that meeting has yet to be published.

This means that members of the public and interested parties who could not attend the APPG meeting on 8 October do not have an official minute of that meeting to refer to when commenting on the Draft Terms of Reference and are unable to refer to statements made by Dr Turner at the meeting in relation to the inquiry, in general, and the Terms of Reference, in particular, nor the discussions which followed and the decisions taken. I do not consider the notice issued by the secretariat on 4 November to be an adequate substitute for the official minute of this meeting.

I consider that in general the official minutes of APPG meetings should be published as early as possible and not left until a couple of weeks or less before the next meeting takes place and that the minute of the 8 October meeting should be published without further delay.

7] The minute of the APPG meeting held in July 2008 gave no indication of how the group intends to make use of any report resulting out of its inquiry, neither does the Draft Terms of Reference nor any notice issued since by the secretariat. I am concerned that it remains undefined what use the APPG intends to make of its inquiry and any report resulting out of it and that the APPG has not identified to whom it intends to present its findings and to what end. This needs to be addressed.

8] The Judicial Review of the NICE “CFS/ME” Guideline is scheduled for February. Irrespective of whatever views and opinions the APPG might hold about the application to the High Court for Judicial Review or about the NICE Guideline, per se, I consider that it would have been appropriate to have postponed any APPG inquiry into NHS service provision until after the Hearing for the Judicial Review has taken place.

9] Since I consider that no Draft Terms of Reference should have been drawn up before consultation had taken place with all patient organisations and patient representatives who might have wished to have been involved and with the wider ME community, I do not intend to comment in any depth on the draft as presented on 8 October, other than to register my concerns for the following:

That the term “WHO ICD 10: G93.3″ has not been used in the Draft Terms of Reference.

The data returned by Strategic Health Authorities (SHAs) and Primary Care Trusts (PCTs) is going to include data on existing service frameworks, new service provision, patient outcomes, training and funding for services offered to patients with a range of conditions: depression, anxiety and fatigue; chronic fatigue; chronic fatigue syndrome and neurological M.E. (WHO ICD 10: G93.3), including those with very severe M.E. The terms “M.E.” and “Myalgic Encephalomyelitis/Encephalopathy” are frequently used interchangeably with the terms “Chronic Fatigue Syndrome”, “CFS”, “chronic fatigue syndrome” and “chronic fatigue” by those responsible for the oversight of service provision and by those directly involved in delivering services to patients.

How does the APPG propose to disentangle the data from SHAs and PCTs and evaluate its relevance in terms of quality, appropriateness and accessibility for patients suffering from M.E. (WHO ICD 10: G93.3) when the Inquiry’s Terms of Reference fail to define which patient group this inquiry will be collecting data on? Why has the APPG shied away from the use of the term “WHO ICD 10: G93.3″?

The Draft Terms of Reference acknowledges “high levels of patient concern about the services which are being provided” and also acknowledges concerns that “recommendations contained in the 2007 guideline on ME/CFS from NICE could result in an inflexible approach to management”.

If one of the aims of this project is to identify within current service provision and planned clinical services the lack of biomedical services, treatments and testing appropriate to the needs of adults and children with M.E. (WHO ICD 10: G93.3) including the severely affected, in order to use an inquiry report to lobby for biomedical models of treatment to improve the lives of these patients, it is doubtful whether this will be achieved through the Terms of Reference as they stand.

Adoption of these Terms of Reference should be postponed until wider consultation over the aims and objectives of this proposed inquiry has been undertaken.

Declaration of interest:

Parent/primary carer of a young person with ME (WHO ICD 10: G93.3)

I maintain sites at  and  for political issues affecting the lives of the UK ME patient community.


Suzy Chapman


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