misinformation contained in a piece that appeared on Friday 5th.
Specifically, an article by Stephanie Marsh contained the totally incorrect
and unsubstantiated assertion that =B3 =8Aby combining cognitive behavioural
therapy and light exercise a third of patients make a full recovery.=B2
We have brought this to the attention of the features section and also
submitted to the letters page.
We have asked for a correction to be made.
Here is what was sent by the 25% ME Group:
In her interview with =B3Britain=B9s foremost authority on ME, or chronic
fatigue syndrome (CFS) as it is also known=B2 (Aug 6) Stephanie Marsh informs
Times readers that: =B3 =8Aby combining cognitive behavioural therapy and light
exercise a third of patients make a full recovery.=B2
=20
If only this were so.
=20
Whether intentionally or not, Stephanie Marsh repeats an error contained in
an commentary article from in The Lancet* regarding the =8CPACE=B9 Trial**. The
senior editor at the Lancet has acknowledged that =B3we should correct the
Bleijenberg and Knoop Comment, since White et al explicitly state that
recovery will be reported in a separate report.=B2
=20
What the =8CPACE=B9 trial investigators did report was that around one third of
participants were =B3within the normal range=B2. This is a statistical concept,
not to be confused with =8Cnormal=B9 in the colloquial sense. Indeed, around 90=
%
of the general population fall =B3within the normal range=B2 on one of the
indicators concerned.
=20
What=B9s more it was possible for a person to deteriorate over the course of
this trial and yet to figure =B3within the normal range=B2 when outcomes were
assessed.=20
=20
As well as misreporting efficacy, the Times article is confused on a very
basic point.=20
=20
The =8CPACE=B9 research did not concern =B3ME, or chronic fatigue syndrome (CFS)
as it is also known=B2 in the first place. After publication the authors
acknowledged that the study relates to people with a principal complaint of
chronic fatigue, and not to those with =B3CFS/ME=B2. It is vital to be clear
about this as people with ME consistently report catastrophic and lasting
deterioration following exercise.
=20
Is it too much to ask that Times journalists consider the evidence rather
than indulging in sensational but inaccurate reporting?
=20
Helen Brownlie
25% ME Group =20
(UK charity representing people severely affected by ME)
=20
ENDS
=20
REFERENCES (FOR INFORMATION)
* Chronic Fatigue Syndrome: where to PACE from here? Gijs Bleijenberg,
and Hans Knoop, The Lancet, Volume 377, Issue 9768, 5 March 2011-11 March
2011, Pages 786-788.
** Comparison of adaptive pacing therapy, cognitive behaviour therapy,
graded exercise therapy, and specialist medical care for chronic fatigue
syndrome (PACE): a randomised trial PD White, KA Goldsmith, AL Johnson, =
L
Potts, R Walwyn, JC DeCesare, HL Baber, M Burgess, LV Clark, DL Cox, J
Bavinton, BJ Angus, G Murphy, M Murphy, H O'Dowd, D Wilks, P McCrone, T
Chalder, M Sharpe on behalf of the PACE trial management group; The Lancet,
Volume 377, Issue 9768, 5 March 2011 - 11 March 2011, Pages 823-836
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