Proposal for a Parliamentary Debate on current urgent problems for ME patients

Note:

1] John Bercow, MP for Buckingham is a Patron of the ME Association. This interest has not been disclosed in the 25% ME Group material below.

2] The Gibson Report was published without consultation in November, 2006, and an electronic copy sent to all MPs. The Group on Scientific Research into Myalgic Encephalomyelitis [the GSRME] which undertook this unofficial inquiry and published this unofficial report disbanded in May, 2007 because half of the panel were no longer willing to attend meetings, to continue to engage with the work of the Group or willing to consider amendments to the Report. As a result, the factual inaccuracies, errors, ambiguities and omissions identified in the Report, post publication, by UK national ME charities, campaigning organisations and the ME patient community remain unaddressed and the Group does not intend to issue a revised and corrected version of this document.

3] Dr Gibson suspended his plans for laying down an EDM based on the Report of the GSRME in March, 2007, claiming that he was “not prepared to submit an EDM that will lead to a counter campaign asking MPs not to sign it.”  The ME Association subsequently reported that “Dr Ian Gibson MP will not launching the EDM while there is a very real prospect of a counter-campaign being mounted against it by an ME activist faction.”

Readers should be aware that no threat of mounting any “counter-campaign” against this proposed EDM had been made and at no time had it been suggested that Dr Gibson should withdraw his plans for launching an EDM. The concerns were, firstly, that if the GSRME panel were unwilling to make corrections and amendments to the Report in response to the concerns brought to its attention by national ME charities, ME organisations and the ME community then the GSRME panel would be expecting the charities to campaign on the basis of an EDM which promoted a flawed report known to contain inaccuracies and ambiguities potentially detrimental to the welfare of vulnerable sectors of a patient community and which could not be considered fit for purpose; secondly, that Dr Gibson had failed to properly consult with the ME community over the proposed content and wording of the EDM.

4] The 25% ME Group has prepared a form letter that can be used for sending to MPs requesting a debate on ME which can be downloaded from the 25% ME Group’s website. The form letter draws attention to the Report of the GSRME. At the public meeting of the GSRME, in February, this year, Doris Jones had raised several significant concerns about some sections of the Report, on behalf of herself and on behalf of the 25% ME Group and had also called, specifically, for a rewrite of the section on ME in Teenagers and Children [Section 2.4].

Why then are the 25% ME Group and Doris Jones (who assisted in the preparation of this form letter) prepared to endorse this flawed, uncorrected and unrevised document?

5] The ME Association (of which Mr Bercow is a Patron) also raised criticisms and concerns, verbally and in writing, about specific sections of the “Gibson Report” at the GSRME public meeting, but this organisation is also actively promoting this document as a campaigning tool. The March/April issue of the ME Association’s magazine “ME Essential” carried a promotion of the (already suspended) EDM. The ME Association stated in its “Summary” of the July APPG on ME meeting that with reference to the proposal for a parliamentary debate it is preparing a comprehensive media and political briefing paper on the issues of DWP medical guidance, NHS Plus occupational health guidance, NICE guidelines, NHS services and MRC research strategy which can be used for both media and political campaigning.

It is likely that this forthcoming ME Association briefing paper will be rolled out on the back of the flawed “Gibson Report”.

6] The Countess of Mar, who was a member of the GSRME panel, is a Patron of the 25% ME Group.


Proposal for a Parliamentary Debate on current urgent problems for ME patients

Issued by the 25% ME Group, 19 July 2007

At the All Party Parliamentary Group Meeting on ME held at the House of Commons on 12.7.2007 the principal topic of discussion concerned funding problems for specialist services for ME/CFS patients, experienced particularly in the Norfolk/ Suffolk/Cambridgeshire areas, as reported by Dr Terry Mitchell, but also applying generally throughout the country.

However, John Bercow MP for Buckingham said he had recently visited Dr Charles Shepherd and was aware of many urgent problems affecting ME patients. The MEA’s office was in his constituency and therefore he had a special interest in the subject. He suggested that the combination of a very critical current situation, a reshuffle of ministers and a change in governmental appointments offered a timely opportunity to call for a parliamentary debate on ME. This proposal was endorsed by Dr Des Turner MP, Chairman of the APPG on ME, and supported by all those present. It was stressed that it would be necessary for numerous requests to be made for such a debate, and therefore patients should contact their MPs urgently with such requests. Dr Turner stated there were a number of critical issues to be discussed: funding for clinical services, the general lack of research, several new guidelines (e.g. NICE, DWP, NHS Plus), Dr Gibson’s Report etc. Hence this would need to be a long debate of at least one hour.

It is understood that this proposed parliamentary debate will replace the previously proposed Early Day Motion, following the release of Dr Gibson’s Report.

We urge all our members to write urgently to their MPs requesting an early parliamentary debate on ME.

25% ME Group
21 Church Street
Troon
Ayrshire
KA10 6HT

Email enquiries

Simon Lawrence
19 July 2007

The 25% ME Group’s form letter can be read here

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