Reflections on the All Party Parliamentary Group meetings on ME – part 2

Another speaker who drew my attention was Dr Esther Crawley.
Dr Crawley is a consultant paediatrician and was a member of the
NICE Guideline Development Group by the time she attended the February
2007 meeting. Out of all the guest speakers, Crawley seemed most out of her
depth. The nadir was reached when people questioned her, she looked to an
adviser for help and some of us muttered our incredulity to each other.

If she was on a football pitch, she would have been substituted.

Amongst the answers she gave to at least partially elicit the negative reaction
were “chronic fatigue syndrome”, a term which she referred to on more than one
occasion, (bit of a no no – think of sound accompanying negative answer on Family
Fortunes), “biopsychosocial” and “individualised treatments”

Note “individualised treatments” and my previous reference to “dustbin diagnosis”
in part 1 of this look back.

She made a reappearance at the APPG inquiry into NHS service provision two and
a half years later which was not as floundering. Then again, the questioning was
far tamer.

Somebody who was more sure of himself was John Hutton – MP for Barrow and Furness
and one of Purnell’s predecessors by virtue of being ‘boss’ of the DWP when he attended
the APPG in November 2006. A more steely character than Purnell with a rather colder, taller
and leaner look to him, Hutton gave the impression that he was carrying out orders.
As with other ministers – especially the DWP ones – he turned up to tell us what’s what.
He seemed to have a rather bland, faceless minister aura about him but coupled with the comparative
toughness, he’s less easily shrugged off the ball, at the risk of referring to football again.

What was very telling was the fact that three secretaries of state for work and pensions
attended. Not one secretary of state for health attended. If anybody wants to know
just what the priorities of the government are regarding ME, read the first two sentences
of this paragraph. However, nothing will be achieved by tut-tutting at this fact although
I have a strong feeling that is merely what will happen, such is the Mahatma Gandhi-like
killer instinct that large sections of the ME ‘community’ have.

Next in the ‘memorable speaker’ section is one Dr Ira Madan, whose appearance took place
in May 2007. Out of all the guest speakers, I found her to be the most objectionable and evasive
but with a mild steeliness that was lacking in Purnell and Crawley. Sir Peter Spencer, CEO of Action
for ME, claimed that Madan was hiding behind ministerial decisions whilst Dr Charles Shepherd,
medical adviser to the ME Association, said about Madan in his summary:
“There was very critical questioning during and after her presentation. 
Some of the answers were not at all convincing”. One attendee said that Madan was
talking “rubbish”.

Madan was another who used the term “chronic fatigue syndrome” frequently.
As much as the term ME (Myalgic Encephalomyelitis) might be imperfect,
at least it’s not the pile of **** that ‘CFS’ is…..


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