Campaigning for Research into ME (RiME)
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 Ms. 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 Jill Cooper 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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