Sunday, November 28, 2010

Prelude to the Party


Prelude to the Party?

Margaret Williams      27th November 2010

On Monday 29th November 2010 St Bartholomew's Hospital (Barts) "Fatigue
Service" will be holding a combined training day and birthday party -
complete with birthday cake - to celebrate 25 years of its "service" to
those suffering from chronic fatigue.

Will the "party piece" be the presentation of the PACE Trial results?

Those who have not been invited to the party may still have fun by reminding
themselves of some of the celebration party games that seem to be being

For example, the party-goers seem to believe that they are studying people
with the chronic inflammatory neuroimmune disease ME/CFS (known to the
party-goers as "CFS/ME") but is this just a "make-believe" party game?  In
reality, according to Professor Peter White's letter of 14th July 2006 to
the West Midlands MREC, the party-goers have included anyone in their PACE
Trial "whose main complaint is fatigue (or a synonym)", thereby opening the
PACE Trial to anyone who is simply tired all the time (TATT); they also
included people with post-herpetic (ie. post-shingles) fatigue, people with
fibromyalgia (long known to be a distinct disorder, this being recently
confirmed by neurologist Professor Ben Natelson: Conf Proc IEEE Med Biol Soc
2010:1:5391-5394), and perhaps even some people with ME/CFS -- in fact, it
seems that everyone was welcome.

By seeming to play hearty party games and by guessing that all these
different disorders are one and the same, the party-goers seem to enjoy
themselves and to believe that different disorders which require different
management can all be cured by one single hit (ie. convincing sufferers that
they are only sick because they think they're sick). It's only make-believe,
after all.

Then there seems to be the game  -- and this one seems to be a real
favourite - where patients are told that their symptoms must be ignored, and
that they must not seek medical help for their symptoms no matter how
serious or frightening they may be  -- the CBT Therapists' Manual makes it
clear that there is nothing physically wrong, so there can't be anything
wrong except the patients' wrong beliefs (it seems to be OK for the
party-goers themselves to have wrong beliefs, all in good fun, of course).

Next comes what seems to be the real show-stopper: the party-goers seem to
be playing a magical game by convincing patients that they (the party-goers)
believe that the symptoms are genuine indicators of organic pathology, when
they don't believe that at all. The party-goers believe that there is no
pathology to account for the patients' symptoms, yet they assure patients
that their illness is "real" (which patients are encouraged to believe means
"physical" as opposed to "mental"), so again, it all seems to be a splendid
party game.

And it seems to be such a fun game not to measure objective levels of
post-intervention improvement; why bother with actometers when the
party-goers can rely on measures they created themselves and when actometry
might even show a worsening of symptoms? Professor Peter White knows that
the pro-inflammatory cytokine TNFa remains elevated three days after
exercise in "CFS/ME" patients (JCFS 2004:12 (2):51-66): "We found that
exercise induced a sustained elevation in the concentration of TNF-a which
was still present three days later, and this only occurred in the CFS
patients...Altered cytokine levels, whatever their origin, could modify
muscle and or neuronal function..The pro-inflammatory cytokine TNF-a is
known to be a cause of acute sickness behaviour, characterised by reduced
activity related to 'weakness, malaise, listlessness and inability to
concentrate', symptoms also notable in CFS", but it seems to be terrific fun
to pretend that this isn't of any significance and to withhold it from
patients and therapists alike (the Therapists' Manual on GET is dismissive
of studies showing immune dysfunction in ME/CFS).

It's been a grand 25 years for the party-goers, even though they may not
have cured a single person with ME/CFS in that quarter of a century.

Despite this, the happy party-goers seem not to have changed their belief
that they are dealing with a functional somatic syndrome, so behavioural
modification strategies really ought to work (the unsuccessful FINE Trial
may have been just a blip that can be rectified by further and lengthier
studies using the same interventions).

The privileged party-goers do seem to enjoy playing their favourite party
games, but whilst they are celebrating their wonderful achievements at the
top table with a birthday cake (and training others in their successful
management strategies), desperately sick patients must mount their protest
in the gutter.

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