RiME: Summary of APPG Meeting 21.10.09

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Campaigning for Research into ME (RiME)  www.rime.me.uk

Dec. 1 2009

To Tristana Rodriguez AfME,

Today, the day before the APPG meeting, you have released (1) the minutes of the last meeting (2) a draft of the APPG Legacy Document.

It would seem you expect ME patients to read and digest all of this, before tomorrow’s meeting?

This is totally unacceptable and the matter needs to be discussed at tomorrow’s meeting.

It leads ME patients to ask, ‘Do the people running the APPG on ME understand what the neourological illness Myalgic Encephalomyelitis is?’

Yours Sincerely,

Paul Davis RiME

cc interested ME parties

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Campaiging for Research into ME (RiME)  www.rime.me.uk

Summary of APPG Meeting 21/10/09

1.31 pm Meeting starts. Dr. Des Turner MP Chair says that the APPG will have to be reformed after the General Election in 2010. A legacy paper is being prepared – comments on the second draft of the paper must be sent to the Secretariat by November 20.

Dr. Turner says the date of next APPG meeting will be December 2nd. On the agenda will be the services inquiry report with the possible attendance of a Health Minister. He says that only AfME and the MEA will see the draft report.

Paul Davis RiME says that RiME has received over 50 copies of evidence submitted to Inquiry. Having read the large majority, with the exception of one, they are all negative. ME patients say the basis on which they were set up – CMO Report is bogus and they don’t want them. Period. Matters of structure, finance, post-code lottery are irrelevant.

Christine Harrison BRAME said she wanted to inject a note of optimism – I didn’t catch what she said after that.

Ciaran Farrell: re. consultation on Inquiry Report: the report needs to be circulated ahead of time so there can be a proper, informed discussion at next meeting.

Paul Davis said re. Oral Presentations that the Chair had allowed matters outside the Terms of Reference to be discussed.

Dr. Turner said something about being flexible.

Paul Davis specifically mentioned the Lightning Process: Did the Chair not only allow someone to talk about it but comment positively on it himself? To our knowledge LP isn’t being practiced in any of the clinics set up following the CMO Report.

Ciaran Farrell supported Paul Davis on the matter of LP and asked Dr. Turner if he is prepared to make a statement about how and why he was being flexible. Dr. Turner declined to do so.

Dr. Turner said we need to look at all treatments.

Michelle Goldberg ME patient talked about various forms of abuse; “Institutional domestic violence”.

Janice Kent Remember talked about misdiagnosis and says that other illnesses are treated better.

Dr. Shepherd MEA bemoaned lack of medical help and expertise.

Dr. Turner mentions XMRV Virus and ongoing research in America.

Paul Davis thanked the Chair for mentioning XMRV but pointed out that the British Government still isn’t funding any biomedical research.

Colin Barton Sussex Group said that some research might be carried out at Barts.

Annette Barclay raised concerns and said who would want Barts doing such research? Several put their hands up in support of Annette.

2.09pm – Yvette Cooper Secretary of State for DWP enters, accompanied by Dr. James Bolton, Deputy Chief Medical Adviser to DWP.

Ms Cooper talked about her own experience, saying she had been ill with ME for two years (1993-5) and off work for a year. She outlined the changes to the care, welfare and benefits system – especially the introduction of Employment and Support Allowance (ESA) to replace Incapacity Benefit and the role of Work Capability Assessment (WCA) in deciding eligibility for ESA. She said she understood concerns re. the fluctuating nature of ME and the need for a flexible approach re. return to work. She believed the ESA and WCA took those issues into account. Re. DLA: she said that DLA for people of working age was not under review.

Dr. Turner raised the issue of problems with tribunals. Examples of unsatisfatory procedures were mentioned by several attendees. Ms Cooper said tribunals were classed as ‘independent’ and their administration came under the Ministry of Justice.

Dr. Shepherd asked Dr. Bolton if he would meet with ME charity representatives to discuss concerns in more detail. He said yes. Shepherd says in his notes that this will be followed up via Forward-ME.

2.55pm Cooper left

Jill Cooper West Midlands Group Consortium read out a further statement to do with issues about patient representation, transparency, and the education and training program of the Co-ordinating Clinical and Research Network and Collaborative (CCRNC). She said that WMMEG had received a copy of the CCRNC Constitution from Dr. Esther Crawley. The document excludes anyone who does not support the NICE Guidelines. This practice is at variance with the Health Department’s position on patient representation which is to ‘provide a free exchange of ideas, questions, comments or criticisms… ‘

Dr. Shepherd confirmed that charities who do not support the NICE guidelines are excluded from the CCRNC.
Lady Mar and Jill Cooper disagree over CCRNC.
Ciaran Farrell said there is a great deal of concern about the NICE guidelines and that it was unfair and unreasonable to exclude people from the CCRNC.

Colin Barton objects to criticism of clinics saying many are being treated at them.

Annette Barclay and Nicky Zussman disagree with him.

3.10 pm – Meeting Ends.

Disclaimer: the above is based on my and others’ scribbled notes; cannot guarantee 100% accuracy.

Overview

RiME got something in last week re. Legacy Document.

RiME’s submission said the performance of the APPG 1999-2009 had been disappointing, and concluded:

We deem the best criteria for adjudging the APPG 1999-2009 is to simply ask the question, ‘are ME patients better off now?’ Answer: No. Indeed, many would say they are worse off. The text above has focused upon concerns re. services and research. But are there not still problems in other areas such as welfare and child protection?

If those running the APPG were to counter by saying, we are essentially about awareness, not lobbying – then two questions come to mind (1) is awareness enough? (2) has the APPG been portraying an accurate picture eg has it painted too rosy a picture re. the clinics?

RiME recommends:

1. A fresh start with five new officers following 2010 General Election…

2. An independent Secretariat.

3. Detailed attention to matters of nomenclature and classification.

4. The focus to be on biomedical research…

Paul Davis rimexx@tiscali.co.uk     www.rime.me.uk

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