RiME: Summary APPG on ME meeting 8 July 2008

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

Summary of APPG on ME Meeting 8/7/09

Meeting started 1.30pm

Politicians present: Des Turner MP, Andrew Stunell MP, Peter Luff MP; Lady Mar.

AGM

It was decided that Lady Mar would replace Ian Gibson as Secretary; otherwise the line-up stays the same:

Chair – Des Turner MP, Vice-Chairs – Tony Wright MP + Andrew Stunell MP, Treasurer – David Amess MP.

Inquiry

Paul Davis RiME raised concerns about objectivity, reminding people that the Gibson Report signed by Des Turner and Lady Mar 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)

In addition, you (Turner) said at the APPG meeting 2/7/08 you expected the inquiry would be taking evidence on progress ( – ed?) made since the CMO Report in January 2002.

Many ME patients, I said, would say that matters had regressed since the publication of the CMO Report 2002.

Were you not being precocious Dr Turner?

If I remember correctly, Turner looked at Lady Mar, seemed to laugh, and then mutter something I couldn’t hear.

On a wider note, Paul Davis mentioned the services in Sussex saying ‘you are patron of the Sussex Group Dr Turner, which supports the clinics in Sussex, yes?’ Turner nodded.

Davis – Patients accepted as referrals into the Sussex CFS/ME MDT need to fulfil the following criteria….

• The patient is willing to have a biopsychosocial and management assessment

(this in turn is based on the CNCC at Barts London, which says under Referral Criteria, ‘The patient is willing to have a biopsychosocial assessment’).

So, in addition to recognising ME to be a neurolgical illness under G93.3 (as APPG Chair) do you also deem it, in part at least, psychosocial? Is that not contradictory? (see Overview of meeting – below).

At this point, Dr Turner turned again to Lady Mar; they smiled; and if I caught what he muttered, said something about he couldn’t see a problem and isn’t there a psychosocial element to all illnesses?

(Gus Ryan/Ciaran Farrell notes say that Turner said that the Sussex Group were not keen on the Inquiry as they were psychosocially minded).

Janice Kent ReMember said something quietly to do with the Sussex Services which I couldn’t hear.

Jill Cooper West Midlands ME Groups Consortium pointed out that evidence sent to Inquiry wasn’t being acknowledged. I concurred.

Charles Shepherd MEA said there was a lack of publicity re. Inquiry.

2.00pm Turner left, followed by Stunell and Luff. Lady Mar chaired rest of meeting.

Peter Spencer AfME: We have to recognise that the decision taken at last meeting to drive ahead with timescales was taken in the knowledge that the Inquiry is not going to be as high-quality or as comprehensive as some had aspired to… The concern people have that the work may be of such poor quality as to be of no value is a real one… I hope that a report will come out which has sufficient credibility, a sufficient evidence base and sufficient authority from the parliamentarians to make it something that the Health Select Committee might want to take up, where there will be a much more thorough investigation. That is a realistic ambition.

Jill Cooper said an endocrinologist runs the ME clinic in Warwickshire (Nuneaton) and people are concerned that if there is no further funding the clinic may not continue to run.

Michelle Goldberg thought Dr William Weir should be involved in the process. Shepherd pointed out that he was in private practice now.

Statement form WMMEG (West Midlands ME Groups Consortium)

Jill Cooper: Can the Secretariat confirm that copies of the correct statement have been sent to attendees of the April meeting? Heather Walker AfME said they had.

Cooper: The key issues outlined of CCNRC Transparancy & Accountability remain unresolved. Whilst we would always advocate measured & constructive dialogue, without transcripts/DVD etc pwME & local groups cannot possibly judge whether the perceived “benefits” of being a “critical friend” as advocated by AfME & AYME, is actually supported by any tangible evidence that it is benefitting pwME and their families?

We would like sufficient time to be allocated to discuss this key issue of appropriate NHS education & training at a future APPG meeting: No point in people clamouring for more NHS resources if staff are being centrally “trained” to view ME/CFS as a psychosomatic illness.

Spencer said AfME would remain a critical partner with the NHS. Stephen Holgate MRC, he said, understood the frustration of ME patients; there were efforts to get new research talent into the field; talk of developing a tissue archive.

Lady Mar said her message about the problems with Pathways to Work is getting through.

Future of the APPG

Lady Mar said the future of the APPG is up in the air due to the impending General Election.

Future Work

Jane Colby TYMES: follow up was needed re. children being sectioned. Spencer, how? Lady Mar said get Inspector of Social Services involved.

Christine Harrison said the DWP Welfare to Work is still an issue

Legacy Paper

Spencer raised the idea of an APPG consensus document – outstanding concerns, obectives…

Shepherd said this was admirable but wanted input from MEA.

Meeting closed 2.36pm.

Disclaimer: The above is based largely on my scribbled notes. I cannot guarantee 100% accuracy. It is a summary, not a verbatim account.

Overview

This was the smallest gathering I have witnessed (probably to do with Inquiry oral sessions starting the next day – good planning eh?); and the shortest meeting.

At these meetings, there is not always the opportunity to pursue a line of enquiry. Sometimes the meeting moves on… Following my question to Dr Turner, ‘is that not contradictory’ (see above) – if I remember correctly (1) Janice Kent said a few words, then (2) I did get a point in that ‘treatment’ seems to be essentially psychosocial but not bio.

Those familiar with RiME will know what I am driving at. For the less initiated: Myalgic Encephalomyelitis (ME) is recognised by the World Health Organisation, eminent scientists, the APPG even, as a neurological illness. But the British Government has not spent a single penny investigating what is causing/perpetuating this dreadful neurological illness. Instead, it put bits of chicken-feed into psychosocial models of treatment. A cheap option, of course. Scandalous.

What is the APPG doing about it? Nothing, it would appear. The Gibson Report which Dr Turner + Lady Mar signed up to has been and gone. If the primary aim of the latter was to effect publicly funded biomedical ME Research, it failed; and there was no plan B. The APPG then, it would seem, has given up on that front.

If the APPG was genuinely about trying to help people with G93.3 ME would it not be lobbying vigorously for biomedical research? There would appear to be nothing to suggest it is. Instead, what is it doing? Holding an Inquiry into clinics which practice psychosocial models of ‘treatment’. Clincs which, throughout England, are being condemned by ME parties. Extremely disappointing, to say the least. Who, at this stage, would bet against it manufacturing a report favorable to the clinics set up following CMO Report? APPG officials have already demonstrated support for the clinics (see website, NHS Services Inquiry folder, RiME Comment May 27 file).

Re Inquiry: Thanks to those groups and individuals who sent copies of written evidence for RiME bank (over 50 so far). More on this soon. Those who contacted RiME saying they couldn’t participate on principle, we respect your decision. I would say the general consensus is that the APPG on ME is not working in the interests of ME patients; indeed, many would say it is working against them.

Paul Davis
rimexx@tiscali.co.uk

www.rime.me.uk

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