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Dangers of research into chronic fatigue syndrome

BMJ 2011; 342 doi: (Published 22 June 2011) Cite this as: BMJ 2011;342:d3780

Dangers of cognitive errors and a-priori assumptions

Nigel Hawke describes, CFS/ME as "a common condition, and very
debilitating . . . Patients are incapacitated for years, unable to move,
sometimes bed ridden and fed through a tube." (1)

And yet the NICE panel concluded, "Our report, based on a solid
review of the evidence, was that graded exercise and cognitive behavioural
therapy were the best, indeed only, treatments." (1)

For how many years has CBT and GET been "the best, indeed only,
treatment" for such a debilitating illness?

Has even a single bedridden patient participated in a study of the
effectiveness of CBT or GET?

If the "only treatments" for CFS/ME were not tested on the most
disabled sufferers, did the NICE panel conclude that these patients are
unworthy of treatment? Does this attitude apply to the baffling,
primarily psychosomatic, predominantly female affliction, anorexia
nervosa? Do the guidelines for that condition overlook the need for
treatment of the very sickest patients?

Hawke quotes Crawley; "Ninety four per cent of children get better,
while only a third of adults do". (1) That is a markedly different
outcome for two age groups. Do doctors over-diagnose CFS/ME in children?
What other conditions are handled well by children? Doesn't the young
brain cope better with a number of viral infections? What percentage of
adult sufferers are the children (6%) who did not recover?

Phil Parker (2,3) is one of many practitioners who claim to have
developed an expensive treatment that is effective for a sweeping
assortment of conditions. On his website (2) Parker describes Lightning
Process as "a powerful, non medical tool that is tailored to help people
who are stuck in their life or health". On a quick visit to Parker's
websites, (2,3) without leaving the first page, I found claims LP is
effective for: CFS/ME, fibromyalgia, chronic pain, MS, IBS, digestive
issues, food/chemical intolerances, weight loss, eating disorders,
addiction, depression, phobias/anxiety/stress, low self esteem, OCD, (2)
lupus, ADHD, sleep disorders, migraine, bipolar II (3). A promotional
testimonial from a patient with Bipolar II states, "What was so
transformative for me on the LP seminar was simply learning that you have
a choice, that when manic or depressed symptoms arise, you don't have to
accept and experience them, that they aren't random external things
happening to you, but reactions which can be altered." (3)

The 'decline effect' (4) in replication studies, especially studies
in the behavioural sciences, caused Jonathon Schooler to suggest
researchers need to improve both rigour and transparency of studies,
"Every researcher should have to spell out, in advance, how many subjects
they're going to use, and what exactly they're testing, and what
constitutes a sufficient level of proof". (4) Ad hoc changes were made to
the outcome parameters of the PACE trial, (5) which favoured the authors'
strong a-priori assumptions. Ninety four percent of the subjects in
Crawley's study are likely to recover with or without LP. The study will
need utmost transparency and rigour if it is to provide worthwhile data.

The CFS/ME online community is not unique. Self-diagnosis and online
peer group-directed treatment is common for numerous conditions, both real
and imagined. Some of the dialogue is appalling for its naivety and
brashness, with all the inherent dangers of overconfidence. However, only
a few extremists condone extreme behaviour towards doctors and scientists.
The need for X-ray of mail etc is appalling, but to condemn an entire
group for the reprehensible actions of a few is bigotry.

(1) Hawkes N. Dangers of research into chronic fatigue syndrome. BMJ
2011; 342:d3780

(2) Phil Parker Lightning Process

(3) Phil Parker Lightning Process

(4) Lehrer J. The Truth Wears Off. The New Yorker 2010; Dec 13

(5) Stouten B, Goudsmit EM, Riley N. 2011 Correspondence on 'The PACE
trial in chronic fatigue syndrome'. The Lancet. 377 (9780): 1832-1833

Competing interests: No competing interests

28 June 2011
Jayne Warwick
Patient Advocate