Scandalous All Party Parliamentary Group On ME/CFS Exposed

Meeting of the All Party Parliamentary Group on M.E.
2 December 2009
By John Sayer, Chairman
M.E. Support Norfolk


This was the first All Party Parliamentary Group on M.E (APPGME) meeting I'd ever been able to attend (thanks to Dan, driving us down to London) and I've now seen for myself how the APPGME operates.

I was not impressed. Worst of all was the surprisingly unprofessional and unhelpful behaviour of the Chairman, Des Turner MP** and the Secretary, the Countess of Mar, right at the start of the meeting: Paul Davis (RiME) had tried to make a point to Turner as he started his opening remarks, and instead of the latter asking him to wait till he'd finished so he could take comments and/or questions (which would be the professional, polite and normal thing for someone chairing a meeting to do), he shouted at Davis for interrupting - like an angry teacher in a classroom - and continued remonstrating, subsequently also turning on attendee Ciaran Farrell, when he politely tried to calm the situation.

There must have been some background history of tension here, since there was no justification for Turner's over-the-top outburst, and in the middle of his continuing rant Mar suddenly demanded that Davis and Farrell be ejected, otherwise she herself would leave. But without waiting for any response, and with attendees looking stunned and/or bemused, she grabbed her things, said she was leaving anyway, and promptly walked out.

Turner continued with his diatribe, and with belligerent looks and gestures, widened the target of his rebukes to apparently include the whole row of us who were seated together, at one point jabbing a finger in our direction and threatening to have anyone who interrupted him escorted out of the building by the police!

It was an apparent case of Turner, having lost his temper, further getting carried away with his emotions, because he then threatened to leave the meeting as well, actually getting to his feet and gathering up his papers. (Other attendees seated opposite us implored him to stay, which he did.)

This entire episode was completely ridiculous, and I suspect it was a case of Turner and Mar having anticipated trouble for some reason and behaving accordingly, but with no actual cause to do so. It was farcical.

As for the rest of the meeting, we 'peasants' were generally treated with what I can only describe as disdain. I would have been open-minded about anyone else's account if I hadn't experienced it for myself. It was a disgrace, in my view, and as far as I'm concerned we can do without 'champions' like these. What the motivation is for being involved, I don't know, but I suspect it might have something to do with seeking to maintain control of 'the movement' through whatever channels available, the APPGME being just one of them.

My suspicions that this episode was artificially engineered were given strength by the subsequent address by Mike O'Brien MP**, Minister of State for Health Services, who - describing M.E. as "a set of conditions" (!) - appeared to labour the point that one of the obstacles to progress was the lack of unity and agreement amongst patient groups. (Where have we heard that one before?) How coincidental and convenient that the meeting began so 'controversially' and demonstrated what a bunch of ungrateful, bolshy irritants we M.E. patients are!

The overwhelming impression I got from this meeting (and not in isolation, as I've been following accounts of previous APPGMEs) is that the whole enterprise is becoming a sham.

Having dragged myself down to London (at a cost that doesn't need explaining here), I was well and truly hacked off at the Secretary walking out before the meeting had even got going, being treated like a pariah by a Chairman threatening to end the meeting and having chronically ill patients removed by the police, and being patronised by a Minister whose address was the epitome of political spin.

O'Brien seemed to believe that having M.E. meant some days feeling poorly and some days feeling well - well enough to have a part-time job, in fact. So we know where he's coming from: apparently the same place as Yvette Cooper MP** (guest speaker at the previous APPGME meeting), Secretary of State for Work and Pensions, who 'had M.E' some years ago but is now 'fully recovered'...

In the meantime, Dr Charles Shepherd of the Myalgic Encephalopathy Association (MEA), has put his own account of the meeting on the MEA web site HERE.

EXTRACT

"Unfortunately, the meeting got off to an extremely regrettable start - all due to a very small section of the audience making repeated and sometimes very aggressive interruptions about various administrative matters. As a result of this gross discourtesy to the Minister, the time available for the ministerial response was being steadily eroded. Despite several polite requests from the Chairman, the interruptions continued. As a result, the Countess of Mar terminated her involvement with the meeting. The Chairman then stated that he would either terminate the meeting or arrange for those involved to be removed from the committee room by the House of Commons police if their interruptions continued. Shortly after, those involved calmed down and we managed to start dealing with the real business of the APPG report."

I'm afraid to say that this version of events at the start of the meeting is so inaccurate as to be justifiably called false. It is not just a distortion of the facts, it is blatantly wrong and I'm now ready to believe that this shameful episode really was deliberately engineered, in order to cast certain individuals - or 'the M.E. community' in general - in as bad a light as possible, presumably for the benefit of the Minister of State for Health Services and/or the TV production crew apparently, according to Shepherd's notes, in attendance.

This meeting "got off to an extremely regrettable start", alright - but not because of the M.E. patients present; it was thanks to the Chairman's and Secretary's inability to control themselves. But there's no need to take my (or anyone else's) word for what happened: the meeting was officially audio-recorded, and the transcript should eventually be made available for all to see.

Little wonder Shepherd refers in his account to "the audience" at this meeting. As far as I could make out, we were an audience, alright - watching a contrived performance.
 
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**Footnote


(From the Daily Telegraph supplement "The Complete Expenses Files"; comments in square my own):

Des Turner (salary 64,766). Des Turner is a former teacher [aha!] with a PhD in biochemistry. He claimed mortgage interest payments of up to 450 per month on a flat in London and also claimed up to 400 each month on food... [Note - the MPs' expenses allowance for food alone is equivalent to Incapacity Benefit payments for those unable to work!]

Mike O'Brien (salary 104,050). Claimed 825 for a Sony television in 2006-7, breaching 750 limit, and repaid money following year so he could move it to other home. Claimed 30 for a DVD player in March 2008, plus 250 a month mortgage interest on his designated second home in Nuneaton and 200 a month for food and more for other bills.

Yvette Cooper (salary 141,866) ...At one point, Miss Cooper, the new Work and Pensions Secretary, and Mr Balls [husband], the Children's Secretary, had their expenses docked, having each submitted two monthly claims for mortgage interest for nearly twice the cost of their actual payments. The couple denied flipping after switching their second home designation three times, saying that they had not sought to maximise their expenses and that, unlike some colleagues, they had paid capital gains tax on selling their home...In total, the couple claimed 24,400 between them on their second home allowance last year...

And it's the sick and disabled these people are supposed to help who are branded "benefits scroungers"?

John Sayer

http://www.theoneclickgroup.co.uk/news.php?start=3200&end=3220&view=yes&id=4251#newspost