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 firstname.lastname@example.org www.rime.me.uk
27 May 2009