Archive for March, 2010


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…..


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.


The Guardian – useless as usual

N.B. Posting this a few weeks after writing it. Sat on it
for a bit of time. Forgot about it. Thought I might as well
post it now, faults an’ all – untouched, other than for
this Nota Bene.

I came across a Guardian report on the Kay Gilderdale case
the other day. For those who are not familiar with the case,
Kay Gilderdale’s daughter Lynn was diagnosed with
Myalgic Encephalomyelitis and was bedridden as a result
of the extreme ill health that she suffered. Lynn Gilderdale
died in December 2008. Kay Gilderdale is in court accused
of the attempted murder of Lynn. Kay Gilderdale has admitted
aiding and abetting suicide.

Both the BBC News online and Guardian online reports
referred to the diagnosis as “Myalgic Encephalopathy”.

I wrote to both the BBC and the Guardian about the inaccuracy
of this name, stating that the World Health Organisation*
uses the term “Benign Myalgic Encephalomyelitis”,
often abbreviated to “Myalgic Encephalomyelitis”
or more often “ME”.

The BBC, to their credit, corrected the mistake.

However, what follows is a brief email exchange between me and
‘user help’ at the Guardian. Me first………..

Dear Sir or Madam,

The story about Kay Gilderdale and the death of her daughter
includes an error. Your piece refers to “Myalgic Encephalopathy”.
The World Health Organisation, under G93.3 of their International
Classification of Diseases, lists “Benign Myalgic Encephalomyelitis”,
usually shortened to ‘Myalgic Encephalomyelitis’ or ‘ME’.

link to Guardian story:

link to classification of ME:

answer from ‘user help’……..

The ME Association say on their website:

“ME is the common name for Myalgic Encephalopathy, sometimes also
known as Myalgic Encephalomyelitis”.

final email – me to them……

> The ME Association say on
> their website:
> “ME is the common
> name for Myalgic
> Encephalopathy, sometimes also known as Myalgic
> Encephalomyelitis”.

The World Health Organisation is somewhat more important
than the ME Association.

The Myalgic Encephalo(pathy)myelitis Association outranks the
World Health Organisation*!
Is it arrogance, stupidity, laziness or agenda from the Guardian?

Note that even though they quote from from the MEA’s site (“ME is the common
name for Myalgic Encephalopathy, sometimes also known as Myalgic Encephalomyelitis”),
the Guardian do not mention “Myalgic Encephalomyelitis” at any point in their report.
As for “Myalgic Encephalopathy, sometimes also known as Myalgic Encephalomyelitis”,
that is utter disingenuity. It’s nearly always referred to as “ME”, increasingly referred
to as “Chronic Fatigue Syndrome” or the even more ******* awful “Chronic Fatigue”.

Now indulging in this little rant probably won’t change the opinions (dare
I say pre-conceived notions?) of those who possibly write for the Guardian
and others but the comically arrogant bollocks of the type that I received
and have read from the Guardian over the years (yes I know but I don’t buy
the paper or buy from any of their advertisers) just ***** me off.

*yes I know it’s with a ‘zee’


Entryism 1

Apologies for the highly unimaginative title but I couldn’t think/be arsed
to think of a more witty or descriptive title for this entry.

Anyway, just noticed a piece in the BBC News online ‘Magazine’ section by
Brendan O’Neill on fish supplements (omega-3 type stuff) where he quotes
Dr Michael Fitzpatrick as a “GP and author of The Tyranny of Health”.
He fails to mention that Dr Fitzpatrick is also a contributor
to ‘Spiked’ – a publication which is edited by Mr. O’Neill.

Just thought I’d mention it……..