RiME: Summary of APPG on ME meeting: 2 December 2009

RiME: Summary of APPG on ME meeting: 2 December 2009

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

RiME Summary of APPG Meeting 2/12/09

Dec. 1

Minutes of last meeting and APPG Draft Legacy Document, written by AfME and MEA, distributed over internet.

Dec. 2

3.00pm – 3.18pm attendees given copy of Interim Report ‘APPG on ME Inquiry into NHS Service Provision for ME/CFS’.

3.18pm meeting starts. Dr. Des Turner APPG Chair says you’ve got the Report; I’ll run you throught it; then I’ll introduce Health Minister Mike O’Brien who will talk about the Report; he’ll take a few questions but must leave by4.00pm. Dr. Turner says he is not entirely satisfied with Report; hence Interim Report; full report in due course; conclusions will remain the same.

Paul Davis RiME has hand up. If I remember correctly, Turner looked at me and nodded. I raised concerns about consultation asking if only AfME and MEA had been involved. Dr. Turner said that was the case.

Paul Davis said you (Dr. Turner) are biased toward AfME and MEA who support the clinics.

Dan Ward Norfolk Group said yes.

Ciaran Farrell said I want to support Paul’s point. Dr. Turner stopped him.

Nicky Zussman said she agrees with Paul’s point.

3.22pm Lady Mar said I move that these two individuals (Davis and Farrell?) are removed from the room. Nicky Zussman says they shouldn’t be removed from the room.

Lady Mar says if they’re not going I am. She leaves the room.

Nicky Zussman continues, saying that we are the patients, and that the APPG should be for the patients, but we don’t have a voice in it; you (Turner) are treating us like children.

Dr. Turner gets to his feet. He says, in raised voice, these two individuals have stretched my patience to its limits and he has a good mind to leave too.

Mary Jane Willows AYME and Jill Cooper West Midlands ME Consortium beg him to stay.

Dr. Turner says, in raised voice, he will stay but if there is one more interruption he will leave.

Dr. Turner goes through 11 key recommendations of Interim Report. There is no time for discussion.

3.47pm Dr. Turner introduces Mike O’Brien. Mike O’Brien said the CMO Report 2002 was a major turning point but the system had not responded adequately and put in place the various clinical, administrative and funding pathways recommended by the CMO Report. The APPG Report was another milestone; its recomendations were sound. ME was a complex, diverse condition. There are different views on treatment – Lightning Process (LP), CBT, GET – depends what works for you. Problems re. services are at a local level becuase ministers no longer rule from Westminster. The area of research was difficult; he was willing to talk to MRC about patients’ concerns. Stop arguing among yourselves.

Janet Taylor Kirklees Yorks talked about neurological services in her area, saying they had been disregarded, ‘what are you going to do about it?’

Janice Kent ReMember was sceptical about LP; Dr. Mike Broughton (Clinical Lead Sussex Services) said it only worked on people who aren’t ill.

Dr. Charles Shepherd MEA said there had been a dismal response from PCTs; they will not provide services at local level. O’Brien: local groups must unite to get proper services. Shepherd: you should be speaking to PCTs. O’Brien: it doesn’t work that way any more.

Dan Ward Norfolk Group said a young ME patient had been asked to prove their fatigue.

Minutes: Paul Davis said he switched his computer on yesterday afternoon to find the minutes and the APPG Legacy Draft Paper. Insufficient time for ME patients to read and digest. Questions Peter Spencer AfME. Spencer says it was due to the short time between meetings. Andrew Stunell MP calls for the minutes to be adopted, but it is agreed they will be bound over.

Dr. Shepherd on XMRV. He had met a number of doctors at MRC. Replication studies are happening and are about to take place in the UK. Early results based on Fukuda CDC criteria patients. Says funding will not be a problem.

Legacy Paper: Dr. Turner says it will be guiding not binding (patients unclear as to what will happen next).

Venue of APPG Meetings: Paul Davis asked if meetings could be held at Portcullis House with easier access for disabled persons. Turner says House of Commons is best place for them.

Welfare: Peter Spencer said evidence suggests that fewer people are getting support.

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

Overview    Control Freakery Taken to New Heights?

Dec.1 RiME wrote to Tristana Rodriguez AfME asking if ME patients were expected to read all the information sent out (see above) by 3.15pm the next day. No reply. Dec. 2 Let’s focus on main topic – Interim Report on Services set up following CMO Report:

First, the Interim Report was handed out shortly before the meeting to attendees, giving them inadequate time to read, digest and comment. It seemed to be presented like a fait accompli. It is evident now that the only ME parties consulted were AfME and the MEA. There are several points I want to make, here:

1. The two charities have supported the clinics from the outset. Their view contrasts with that of RiME and other ME organisations. There is a difference, though: RiME’s concerns about the clinics are backed up by substantial evidence – see our website, Clinics and Letters folders. Theirs is not. We refute their view on that basis.

2. That the APPG would only consult with these two organisations who support the clinics (on what basis?) demonstrates bias.

3. Are these two misguided organisations misleading politicians?

4. The influence of these two organisations within the APPG is totally disproportionate to the size of their memberships; they probably wouldn’t represent 5% of ME patients between them; and their respective memberships seem to be declining.

5. They have an unfair advantage at meetings in that they are ‘in the know’.

What happened at the start of the meeting needs to be viewed within that larger context. First, there is no need for me to defend my action; I acted within the code of conduct. I had my hand up from the start of the meeting; if I remember correctly, Des Turner looked at me; nodded; I spoke. One could make out a case that the meeting was interrupted in that Dr. Turner was talking about the content of the Interim Report, and I took matters back to pre-report; but I stand by what I did; it was a point which I (and others) felt needed making then; and I wanted the objection recorded.

The allegation which was made about the conduct of myself and two others does not stand up. The only person who appeared to be aggressive at the start of the meeting was the Chair (will return to this).

It is disappointing if a few read one of two inaccurate accounts and then jump on the bandwagon; what follows is the usual spiral of claims and counter-claims on the internet which helps no-one; we say to the former: listen to what several have to say before jumping in; and be more careful.

There seems to be a few who feel that the way forward still is to ‘educate and persuade’ politicians. I suggest they read the RiME website, especially ForT and Second Petition folders. I asked Tony Wright to start a Group at the beginning of 1998. Myself and others asked him to pay detailed attention to matters of nomenclature and classification, and focus upon the need for biomedical research. Did he and others heed what we said? No. We say to the above, especially newcomers: Get yourself informed, understand the history, don’t run before you can walk…

Too, there are a few who say we must be nice to one another and the politicians, whatever this means. This is all very well, but when one has tried that approach and got no results, is it sensible to continue that way? In the face of prolonged injustice, is one not entitled to challenge the politicians and national ME charities and make one’s points in a firm, decisive way?

Moving on to the conduct of Lady Mar and Des Turner:

Lady Mar: to say Lady Mar’s action was an over-reaction would be an understatement. If she had said that she objected to the line of questioning and would like it minuted, that’s one thing; if she had said that she objected to the line of questioning and, that if the persons concerned continued in that vein, they should be asked to leave – it would seem OTT. But no, she wanted ME patients forceably removed. For what? Raising issues about consultation.

Dr. Turner: well, he appeared to either lose it or be close to losing it; following Lady Mar’s departure, he seemed to shout at us like naughty school children. Re. what he said – see summary.

We deem the behaviour of both politicians inappropriate and unacceptable. What are they frightened of? The truth?

To sum up: these are the ugliest incidents I have seen to date at an APPG meeting. Were we surprised? Yes and no. Yes, by the extremity of what happened. No, in that it is an extension of what has happened at past meetings. Clearly, there is friction between those run and seek to control the Group and ME patients. The reason behind this is not just to do policy (and consultation), but the way meetings are mis-chaired….

Remember that APPG meetings were only opened up to the public in 2006 (this would seem to be after RiME’s representations to the Parliamentary Commissioner). From the outset there was very much a feeling of ‘them and us’ or ‘patricians and plebs’. At an early stage, it became apparent that the politicians and secretariat (AfME and MEA) could speak when they wanted to and for as long as they wanted (enabling them to influence the course of meetings); whereas, the mere patients had to wait on the discretion of the Chair; consequently we had situations where ME patients (1) would sit indefinitely with their hands up (2) would be stopped from speaking by politicians (3) were not protected from interruption. Have a look at what happened July 2007 and January 2008 (RiME website, APPG meetings folder).

As Nicky pointed out, it has been a Group which is not for ME patients but about them: a Group which is primarily about promoting Government policy (not about G93.3 ME) with its cheap, inappropriate options for ME patients….

Re. the contents of the Interim Report, RiME will post on this shortly (also, RiME’s submission on APPG Legacy Document). Enough for now.

Unwanted Xmas cards – please send to RiME, 10 Carters Hill Close, Mottingham, SE9 4RS

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

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