Round up of APPG and patient organisation items: 02.12.08

A round up of APPG and patient organisation items:

APPG on ME Secretariat:

1] Proposed APPG on ME Inquiry into NHS service provision draft Terms of Reference

On 18 November, I wrote to the APPG Secretariat, CCd to Dr Des Turner MP, Dr Ian Gibson MP and the Countess of Mar asking whether the APPG planned to reconsider its notice of 4 November and announce an extension of the deadline for comments and responses on the draft Terms of Reference in response to the many calls it was receiving for additional time?

I received no response.  Following representations to Dr Ian Gibson, Secretary to the APPG, I was advised by the Gibson Parliamentary Office:

“Please be aware Dr Gibson and I are not responsible for administrating the APPG on ME or for organising the Inquiry into NHS Service Provision. As such we are not a point of contact for concerns with either the APPG generally or the Inquiry. However I have passed all your emails to the APPG Secretariat asking them to coordinate a response with Dr Turner.

Regarding your most recent email below – I will ask Dr Gibson to talk to Dr Turner about the concerns over the deadline.”

I have received no response from Dr Turner or from the APPG secretariat.


In response to enquiries put to Dr Charles Shepherd by John Sayer around this proposed APPG Inquiry, Dr Shepherd replied:

“The Countess of Mar’s group held a two hour meeting on the afternoon of Tuesday November 18th. The APPG Inquiry was on the agenda and this gave everyone present an opportunity to say what they wanted to say about the Inquiry. The intention is to publish the minutes of this meeting on a website, which the Countess of Mar is arranging. So I’m not producing one of my summaries on this meeting.”


“As you say the APPG Inquiry is being undertaken by a group of MPs and members of the House of Lords. Various possible/probable names are already floating around the public domain, but it’s up to Des Turner to announce his team. The Secretariat has been assisting Des with some of the preliminary work: eg drafting the Terms of Reference that was presented to the last APPG meeting, preparation of questionnaires for SHAs, PCTs and people with ME/CFS. But I must stress that the final decisions on content of all of these documents will be left to the parliamentarians, and in the case of the ToR this will obviously include discussion on the large number of comments that have been sent in to the Secretariat by the public.”


Ed: I’m gratified to hear that the APPG received a large number of comments on this draft document and the proposed Inquiry, in general.  I have no information about when the APPG are planning to publish a final Terms of Reference document.  

What might be done if this document, and the proposed APPG Inquiry’s aims and objectives remain unfit for purpose?

Those (selected) organisations whose reps were invited to the Countess of Mar’s two meetings have been given a platform to discuss this Inquiry. But the ME community has been marginalised from these discussions and was told there was to be no wider consultation process.

These (two hour) caucus meetings being held and chaired by the Countess of Mar are being used to discuss an issue – in this case, the Inquiry – that should have been allocated time for full and proper and open discussion at APPG meetings.

What other issues might be taken away from APPGs for behind-closed-doors discussion with selected organisations to be fed back into the APPG? This is exactly what I predicted would happen.

According to the summary of the ME Association’s November Board meeting:

“It looks as though the next meeting of the APPG, provisionally planned for early December, may now be deferred until early in 2009.  Topics and speakers are still to be arranged.  The minutes of the 8 October meeting will appear on the MEA website (news section) once they have been approved.”

At the time of compiling this round up, the Minutes of the October APPG meeting have yet to be published.


Countess of Mar’s Group:

According to the summary of the ME Association’s November Board meeting:

“CS [Dr Charles Shepherd] reported on the decision by the charities and organisations involved in this initiative to continue working together and to hold a second meeting at the House of Lords on Tuesday 18 November.  A website is being set up so that information about the group and minutes from meetings are made public.”

Ed: It’s not confirmed which patient organisations attended this second meeting with the Countess of Mar, on 18 November.  There has been considerable concern around the inclusion in this initiative of the non membership organisation “reMEmber (The Chronic Fatigue Society)” and the deliberate exclusion of RiME.

The Countess of Mar has told RiME: 

“…as far as I can see, neither you nor your organisation appear to have made much progress in advancing the case for ME sufferers to Government over the 15 years that I have been working with PwME, and therefore I do not see why I should account for my actions to you.”


On Monday 24 November, the Countess of Mar let it be known that she had just sent a second letter to Paul Davis.  I am expecting RiME to publish a response shortly in relation this and other topical issues.


ME Association:

According to the summary of the ME Association’s November Board meeting:

“Medical Research Council (MRC) Advisory Group on ME/CFS Research  CS updated trustees on the current situation regarding this group, which is being set up by Professor Stephen Holgate.  The MEA has been invited to give a presentation to the group at a meeting that has been provisionally arranged by the MRC for mid December.”

Ed: In November, I submitted a second FOI request for information relating to the MRC’s “multi-disciplinary panel” for which a response from the MRC is due on 12 December. 

On 16 November I asked the MRC for:

1] The names of all individuals appointed to date to the MRC CFS/ME multi-disciplinary panel, and their medical, or other, discipline.

I was advised by Ms Raymond on 27 May 2008 that “The terms of reference will be discussed at the first panel meeting (date not yet arranged). We would be happy to send you a copy once they have been agreed.”

2] Has an initial meeting of the panel taken place since my request for information on 25 April, and what was the date of this meeting?

3] Has a Terms of Reference been drawn up?

4] I request a copy of the Terms of Reference.

5] I request the names of any individuals and, where appropriate, the names of the organisations they represent, who have been invited to give presentations in relation to a CFS/ME multi-disciplinary panel as “other interested parties”.

6] I request the names of any individuals and, where appropriate, the names of the organisations they represent, who have already given presentations in relation to a CFS/ME multi-disciplinary panel as “other interested parties” and the dates on which these presentations took place.

7] I request the names of any individuals and, where appropriate, the names of the organisations they represent, who have already been appointed as representatives of “other interested parties” who are to have an involvement with the CFS/ME multi-disciplinary panel.

8] Ms Raymond has advised that, once finalised, the membership of the panel will be published on the MRC website. Does the MRC also intend to publish a list of the names of the individuals and, where appropriate, the names of the organisations they represent, appointed as representatives of “other interested parties” who have an involvement with the CFS/ME multi-disciplinary panel on the MRC website?


The ME Association has announced that its on-line survey for December concerns the NICE guideline on ME/CFS. 

“MEA Quick Survey on the NICE Guideline”

Vote on-line at: 

The MEA asks:

“The MEA thinks the NICE guideline on ME/CFS is unfit for purpose and needs to be re-written”

I agree
I’ve got no opinion either way
I disagree


Any Tom, Dick or Harry can complete this “Quick Survey”.

So, is the MEA going to put out a statement in response to the Countess of Mar’s stated views and opinions on the NICE Guideline and on CBT/GET? 

Is the MEA going to put out a statement about why it is prepared to sit around a table at a caucus meeting with (selected) patient organisations convened and chaired by this unelected parliamentarian who holds these views and seeks “to bring the patient organisations together”?

To what use does the MEA intend to put the results of this “Quick Survey” on the “fitness for purpose” of the NICE Guideline G53? 

The Judicial Review of the NICE Guideline G53 on “CFS/ME” is scheduled for a High Court hearing in early February.  For an update on the JR go here

to the NICE JR supporters website for updates and information.


AfME (Action for ME):

Status of existing ME Alliance:

1] On 20 November 2008, I wrote to AfME with the following enquiries around the status of the existing ME Alliance; I do not have a response, as yet, but will update when AfME’s CEO, Sir Peter Spencer, has answered my questions:

Re: Current status of the ME Alliance

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

I should be pleased if you could clarify the following:

1] Is the ME Alliance still extant?

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

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

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

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

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

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

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

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


2] Today, 2 December 2008, I have written to AfME and asked the organisation to clarify what involvement AfME has had in the NHS partnership with Greater Manchester to provide a specialist CFS/ME helpline, see:

A specialist CFS/ME helpline is now available across Greater Manchester and is run by trained telephone workers who understand CFS/ME. This is a partnership between the NHS and Action for ME: a national charity that provides information and support to people affected by CFS/ME, and campaigns for more research and understanding

Also on the same website:

‘Return to work Issues’ for CFS/ME (Chronic Fatigue Syndrome)

PDF of seminar/workshop

CFS/ME Collaborative and Network Training

‘Return to work Issues’ for CFS/ME (Chronic Fatigue Syndrome)

Thursday, 22nd January 2009
The Nowgen Centre, 29 Grafton Street, Manchester, M13 9WU, Tel: 0161 276 5956