Reflections on the All Party Parliamentary Group meetings on ME – part 1

Sorry about the very dull title…….

Well, that’s it – the final All Party Parliamentary Group meeting
on Myalgic Encephalomyelitis (note “Encephalomyelitis”)
for the parliament that sat between May 2005 and (probably)
May 2010. The chances are that an APPG on ME may well
reform but it will be without the chair, Dr Des Turner, and it
will probably be without a few other parliamentary faces.

There may also be a question mark over the public’s attendance
at future APPGs, should they occur.

I’ve had the fortune/misfortune to attend every single one of the meetings
for the last four years that have been open to the public. What follows are
personal observations based on those meetings and the memories jogged
by rereading the minutes from those meetings. The observations that make
it to this piece do so because they are the strongest in my mind. The observations
are also not in chronological order. The observations may not be to everyone’s liking
but to hell with it – you’re always welcome to leave comments and questions on this topic.


If I needed a phrase or a soundbite to sum up my first APPG
it was “dustbin diagnosis”. It was a name that was touched upon by three
attendees – Kate Tompkins, Ciaran Farrell and Paul Davis.

Four years later, it is still the single most important point in my opinion
and one that has been alluded to but not really addressed.

Have the APPG meetings made a difference?
Well, look at it this way. If you’d have visited your GP in March 2006,
reminded your doctor that you’ve been diagnosed with ME (or CFS or…)
and asked him or her what is available in the way of treatment, they probably
would have said Cognitive Behavioural Therapy. If you visit your GP in
March 2010, remind your doctor that your diagnosis is ME (or CFS or…),
ask him or her what is available in the way of treatment, they will
probably say Cognitive Behavioural Therapy.

The answer to the question would have to be ‘no’.

Is this a fault of the APPG? I don’t think it necessarily is.
That may be a view that is unpopular in certain quarters but
how much power does an APPG have to change things?
Maybe we’re asking too much of an APPG?
Maybe we should be looking elsewhere?

Few of the speakers really made an impression but the ones that did
made unfortunate ones. Step forward erstwhile DWP minister
James Purnell MP (soon to be erstwhile MP too). The October 2008
meeting saw Mr Purnell turn up lecture and yes, I said lecture – none of the
ministers that turned up listened terribly much of course because the subject
matter is not a vote winner and the few people who turned up
are not particularly powerful. Anyway, soon into the meeting
Purnell meekly threatened to leave because a person had the
sheer temerity to speak over over him, disagreeing with him in the process.
Nothing particularly aggressive but to Purnell this was almost too much.

Purnell, as I’ve already mentioned, is leaving parliament in a few weeks
time. His ‘strop’ was a little fey, precious and petulant it seemed to me.
This behaviour appeared to be repeated when he announced
that he was leaving politics after reportedly criticising Gordon Brown’s

I don’t think Purnell had what it takes to climb the greasy political pole
to the top, physically or mentally. He quit after he realised he couldn’t
deal with the knocks.

One that won’t be missed.

One of the more bizarre events occurred at the October 2008 APPG
or to be more precise, occurred just after the APPG whilst waiting
for the lift to the ground floor. One of the attending members of
the public was politely asked by a policeman to accompany them
to a place where he could be questioned. I turned to another
attendee, she turned to me and we both shrugged at each other.
Twenty or so minutes later, we bumped into the interrogated one
downstairs in Westminster Hall. He told us that, at the instigation
of one of the parliamentarians, he had been apprehended for questioning
apropos threats to this particular parliamentarian. The accused attendee
was released (hence bumping into him) without any further action pursued.


1 Response to “Reflections on the All Party Parliamentary Group meetings on ME – part 1”

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