RiME PETITION 2


On September 30 2003 Campaigning for Research into ME (RiME) sent its 8 page Report on the Parliamentary Group on ME (APPG) to the Committee on Public Standards (CPS). A summary of its main points are detailed below.

Increasing numbers seem of the view that the APPG is not a forum for genuine ME Groups/Patients to express their views but that it has become a forum for promoting
Government policy.

The Report and supplementary evidence was returned by the CPS on October 23
with a letter saying:

The Committee's terms of reference specifically preclude it from investigating individual

cases or specific allegations of misconduct..'

Earlier, the letter states that the Committee's Terms of Reference are:

‘To examine current concerns about standards of conduct of all holders of public fife... '

With this in mind, RiME has set up a Petition which invites people to register

their 'current concerns'.

In its Annual Report 2001-2002, the Chair of the CPS says:

'A third important initiative by the Committee is the commissioning of research into public

standards to standards of conduct. We chose to concentrate on the attitudes of the public, rather than office-holders... '

The issue will also be pursued through the Parliamentary Commissioner.

Please consider signing the Petition and circulating it to others.

Best Wishes, Paul Davis RiME


 

SUMMARY OF RiME REPORT ON APPG ON ME

SEPTEMBER 2004

The Committee on Public Standards lays down certain principles which should guide the conduct of Members of Parliament. These include objectivity, openness and accountability. Is the Parliamentary Group on ME (APPG) meeting these criteria?

OBJECTIVITY

ACCESS

In 1999 the Chair said the APPG welcomed submissions from individuals and groups and that all groups and individuals will have equal access.

The APPG has, of late, only invited to its meetings those parties who support the Chief

Medical Officer (CMO)/Medical Research Council (MRC) processes with their heavy emphases on psychiatric models of treatment. Action for ME (officials from AfME have been invited to address the APPG no fewer than six times), selected members of the CMO Group and MRC representatives. Those who don’t (and campaign for research into the physical causes of ME) - RIME, 25% Group. Hooper et el. CAME... – haven’t.

The Chair has maintained all along that the role of the Secretariat (AfME) is purely administrative; that two AfME officials are allowed to meetings, one to take minutes, the other as an observer. At the May2003 meeting AfME's Director was allowed to placed on record AfME's welcome for the MRC strategy and its study into pacing.

RiME PETITION

In September 2002 the 16,114 RiME Petition was presented at the MRC calling for research into the physical causes of ME. RiME asked, initially, that the Petition be presented at an APPG meeting. The Chair said no. RiME asked it be allowed to say something about the Petition at

an APPG meeting. The Chair said no.

The Chair has said that RiME and the 25% Group will never be allowed to address an APPG meeting on the grounds that they have campaigned to gain access. Is it a crime for someone representing severely affected people with ME to ask to say something at the House of Commons on

their behalf?

CONTENT

The APPG is no longer about ME but is about 'CFS/ME’. The Chair has not said why except that others use the term. The inclusion of "CFS' steers the Group's agenda away from ME research towards psychiatric models of treatment which seem more suited to people with 'CFS'.

APPG meetings 2002-2004 were dominated by the CMO/MRC Reports on 'CFS/ME' with their heavy emphases on psychiatric models of treatment - Graded Exercise (GE)/Cognitive Behavioural Therapy (CBT)...

The Chair of the APPG now says GE/CBT do benefit people with ME. The basis for his view is The York Review. The 'expert panel' involved in writing the York Review included Simon Wessely and Harvey Marcovitch (psychiatrist who hit back at the Panorama programme on ME children).

Wessely provided his own database for use.- One third of the Review's references were the work of Wessely and like-minded colleagues.

Scientific studies which point to GE being harmful to ME, and which cast doubt on the efficacy of CBT, were excluded. And The York Review did not include one study on severely affected people with ME. On this basis alone it cannot be accurate or objective.

In short, the Chair of the APPG supported by AfME is endorsing the CMO/MRC processes.

No one is present at APPG meetings to put the other side of the coin or say 'what about research into the epidemiology and underlying physical causes and disease process of ME'

SPIN

The Chair is labelling the projects funded by the MRC - PACE and FINE - as research
(APPG meeting, May 2003).

He tabled an EDM on May 12 2004,'.... congratulates the Govt on its recognition of and efforts in tackling ME to date... '

The Govt doesn't recognise ME to be a physical illness. Will PACE, FINE, more GE, CBT tackle it?

OPENNESS

The APPG is not affording access to ME Groups/individuals with a range of views.

In 1999 the Chair condemned the Royal Colleges Report on CFS (CR 54), co-authored by Simon Wessely promoting GE/CBT... Today he supports a report on CFS (York Review) co-authored by Simon Wessely promoting GE/CBT…

Many of the references in CR54, written or co-authored by Wessely, correspond to those in the York Review, as do references written or co-authored by members of the "Wessely School' (e.g. M Sharpe and T Chalder).

The Chair has been asked to explain his contrasting views but has not.

ACCOUNTABILITY

Many letters sent to officials of the APPG on ME have not been answered eg one person from Kent wrote to the Vice-Chairs, Secretary and Treasurer last year, 'were you in the decision a) to use the term CFS/ME and b) to provide psychiatric models of treatment ie CBT (Dec 2002 APPG meeting) The Vice-Chairs and Secretary never replied. - And many questions contained in letters to APPG officials have not been adequately answered eg the Treasurer never made any attempt to answer the questions raised by Kent but shunted the letter on to Kent's MP. Numerous examples of both deficiencies are referenced in RiME's Report.

The minutes of meetings are nearly always late going out. - During 2003 AfME was put in charge of writing and publicising the minutes. To our knowledge, no-one has seen a copy of the minutes of the October 2003 meeting (addressed by Dr Pinching - AfME - on the £8.5m NHS funding) as late as April 2004

THE PARLIAMENTARY COMMISSIONER

The issues featured above bring into play the rules surrounding All Party Parliamentary Groups.

There is no collective responsibility as far as the APPG on ME is concerned - the Vice-Chair has admitted that the four APPG officials never meet to discuss policy. -This means that power rests essentially with (its Chair, a member of the ruling party.

If the Chair of a Parliamentary Group abuses his/her power, are there procedures in place to check this?

RiME is currently examining the rules governing Parliamentary Groups and will put forward proposals to Sir George Young, Parliamentary Commissioner, re. 'a tightening up'

Lady Mar has offered to help,

Paul Davis RiME 10 Carters Hill Close Mottingham SE9 4RS


To download a copy of the RiME II Petition Signature Sheet

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