Status of the APPG on ME: Time to start asking questions?

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Status of the APPG on ME: Time to start asking questions?

In the “Summary of key issues that were discussed at three meetings of the ME Association”, issued by the ME Association on 24 April 2008, the MEA reports, under “PARLIAMENTARY ACTIVITY”:

“APPG: 
We are still waiting to hear whether a meeting with Lord Darzi can be arranged to discuss our concerns over NHS services. A further reminder letter has just been sent from a group of ME charities. No date for the next APPG meeting has yet been fixed.”

The ME Association does not clarify which “ME charities” were co-signatories to this “reminder letter” nor is it entirely clear to whom this “reminder letter” has been sent – to the office of Lord Darzi or to the APPG on ME? It would also have been helpful if the MEA had been transparent about which “ME charities” have signed this “reminder letter”, especially given that the ME Alliance appears to be moribund.

Although my application for membership of the ME Association was inexplicably denied by the Board of Trustees, in July 2005, there are, nevertheless, some members of the Board who are prepared, on occasions, to engage with me – though engaging with the MEA’s Chair of Trustees, Mr Neil Riley, is often like attempting to nail jelly to the ceiling; for Mr Riley, when faced with uncomfortable questions, plays obfuscatory “I will answer your questions – but first you must be prepared to answer me this…” games and then withdraws from further engagement when I am not prepared to participate in these tiresome rituals.

Tony Britton, secretariat to the APPG on ME, will send me copies of APPG on ME agendas and minutes but even Mr Britton has not been prepared, this last couple of months, to field questions about the setting of a date for the next APPG on ME nor give me a date by which the Minutes of the last meeting, that is, the 22 January meeting, might be issued.

Mr Britton is not alone in his reluctance to respond to questions relating to the APPG, for neither will Heather Walker, AfME’s APPG secretariat, and nor apparently will Dr Ian Gibson nor APPG on ME Chair, Dr Des Turner.

A wall of silence surrounds the APPG which leads me to consider that the APPG may well be in trouble and that its future hangs in the balance.

Given the tenor of the last APPG on ME meeting and what took place at it: grumbles from Tony Wright on behalf of absent Chair, Dr Turner; Dr Ian Gibson, Secretary to the APPG on ME taking the chair in Dr Turner’s absence, instead of either of the two Vice-Chairs who were present; the Countess of Mar’s sudden exit from the meeting; the matter of decisions made based on the outcome of votes proposed by Dr Gibson which included the votes of charity reps and members of the public who, not being members of either House, are not entitled to voting rights at APPG meetings; Dr Gibson’s passing, but unexplored, references to the concepts of “forums” and “ownership” of meetings; Dr Gibson’s leaving the meeting before it had ended and his handing over the chair to a member of Parliament, whom he had failed to introduce to the meeting, who was left to wrap the meeting up but who left the matter of the setting of a date for the next meeting hanging…

then I think it would be timely if a few more individuals were to request that the APPG committee clarifies the current status of the APPG.

On 27 February, my colleague, Ciaran Farrell, and I wrote to the office of Dr Ian Gibson, raising a number of matters with him specifically in relation to the 22 January APPG meeting and also in connection with the APPG, in general. We also put a proposition to Dr Gibson.

To: Dr Ian Gibson, Secretary, APPG on ME
CC: Dr Des Turner, Chair, APPG on ME, Ms Sarah Vero, Researcher to Dr Ian Gibson

Subject: Re: In connection with APPG on ME, 22 January 2008
Sent: Wednesday, February 27, 2008 10:24 AM

We received no response from either Dr Gibson or Dr Turner, or Dr Gibson’s researcher.

We wrote again on 26 March.

To: Dr Ian Gibson, Secretary, APPG on ME
CC: Dr Des Turner, Chair, APPG on ME, Ms Sarah Vero, Researcher to Dr Ian Gibson

Subject: Re: In connection with APPG on ME, 22 January 2008
Sent: Wednesday, March 26, 2008 8:13 PM

Again, we received no response to the various matters we had raised.

On 26 March we also wrote to Dr Turner:

To: Dr Des Turner

Subject: Re: In connection with APPG on ME, 22 January 2008
Sent: Wednesday, March 26, 2008 8:14 PM

We received no response.

On 10 April, we wrote to a member of the public about our concerns that no responses to our enquiries had been received from either Dr Gibson’s office or from Dr Turner, nor had we received any acknowledgements from their respective parliamentary offices; we copied Dr Gibson and his researcher, Ms Vero, into this correspondence and appended copies of our previous two as yet unanswered letters:

To: XXXXXXXXXXXXXXXXX
Cc: Sarah Vero ; Dr Ian Gibson

Subject: Fw: In connection with APPG on ME, 22 January 2008
Sent: Thursday, April 10, 2008 7:37 PM

Twenty days later, we have still received no response or even an acknowledgement – which is unusual for the Gibson office, in our experience.

 

On 5 March I had written to Tony Britton, ME Association and Secretariat to the APPG on ME:

To: Tony Britton

Subject: Re: APPG on ME,January 22
Sent: Wednesday, March 05, 2008 12:23 PM

Has any date or provisional date for the next APPG meeting been put forward yet by the group committee?

Is anything being done by the Secretariat to secure a date or proposed date?

And do you have an ETA now for the publication of the Minutes for the last meeting?

 

No response from Mr Britton.

On 10 March, I prompted Mr Britton for a reply.

Uncharacteristically, I have still received no response, in over seven weeks.

So this leaves a number of questions hanging:

  • Why has Dr Ian Gibson, Secretary to the APPG on ME not been prepared to respond to the various matters we have raised with him in connection with the last APPG meeting?
  • Why did Dr Gibson raise the issue of “forums” at the January meeting and subsequently suggest to an enquirer, on 4 February, that he considered that Associate Parliamentary Groups and Health Forums “may be useful to the ME cause” and that “It may be worth looking into how these health groups operate and asking them to consider running an event or doing a report on ME” and yet has been unwilling to further discuss the issue of whether these types of forums, which may extend membership to commercial concerns and which may function as lobby groups, might be considered better suited to the needs of the ME patient community and our particular problems, or whether this type of forum might be considered inappropriate and not in our best interests?
  • Why has Dr Des Turner, Chair of the APPG on ME not been prepared to respond to the issues we have raised with him?
  • Why has no date for the next meeting been set?
  • When are the Minutes of the January meeting going to be issued?
  • Does the Chair of the APPG on ME, Dr Des Turner, intend to stand down?  Has Dr Turner already stood down? 
  • Just what is the current status of the APPG on ME and why is neither Dr Turner nor Dr Gibson prepared to clarify?

I strongly suggest that others start making their own enquiries.

 

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