SITES AND USE IN NEWSLETTERS
Bristol Evening Post Letters.
While people with M.E. (Myalgic Encephalomyelitis) may have some
interest in the cost of their illness - for the provision of services
and welfare, for example - there is likely to be much more concern about
the validity and reliability of the experimental design which produced
the figures (=A3102m lost earnings due to chronic fatigue, Bristol Evenin=
g
Post, 15 September 2011 -
http://www.thisisbristol.co.uk/pound-102m-lost-earnings-chronic-fatigue/s=
tory-13333565-detail/story.html)
and, most especially, about the implications of recommendations for
treatment intended to enable them to recover a normally healthy working
and social life. This Research Psychologist, diagnosed with M.E. 23
years ago, has never known a single person with M.E. who has not lost at
least one of the following: an irreplaceable slice of life, whether
child or adulthood; education or career; social inclusion; family or
friendships; marriage; home and, sometimes even life itself, on which no
price can be put.
The most obvious explanation for the massive disparity between the 1.3
million people said to have either M.E. or Chronic Fatigue Syndrome
(CFS) and the 250,000 upper range figure of the Department of Health's
estimate for the hybrid CFS/ME and, therefore, the putative costs found
in the University of Bristol study (Collin et al., September 2011 -
http://www.biomedcentral.com/content/pdf/1472-6963-11-217.pdf) led by Dr
Esther Crawley, is that, by definition, they are considering different
entities, probably not one, or even two, but several heterogeneous
illnesses, which pollutes the purity of the sample studied and makes
extrapolation of the conclusions to M.E. sufferers at least
questionable. There never has been a patient number put on M.E., perhaps
not surprisingly, because it still does not have a universally agreed
diagnostic test, which would be necessary to identify the people to
count with any accuracy. Despite the title of the paper and the terms
within it, Dr Crawley always refers to it, in print and broadcast
interviews (ITV, The West Country Tonight, 15 September 2011 -
http://www.itv.com/westcountry-east/me-sufferers-need-help03544/) as
'this illness' as though there is only one, which should be counted and
treated the same way.
It would seem logical that we may come closer to a more accurate figure
for M.E. as a discrete illness by eliminating "chronic fatigue" and the
conjoined "CFS/ME". We should expect the number of people with M.E. to
become substantially smaller when the contaminating "fatigue" variable
has been removed and also for the outcome to be quite different if the
data were to be re-analysed using increasingly more rigorous
discriminatory standards, such as the International Consensus Criteria
(Carruthers et al., August 2011 -
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/abstr=
act)
than those used by Dr Crawley - whether the NICE guidelines of 2007, or
any other criteria - which would admit M.E. sufferers that the ICC would
exclude. This should be done quite simply because there were likely to
be very few if any people with only M.E. (not chronic fatigue or CFS) in
the study sample drawn from NHS treatment services because they would
have been too ill to have travelled to the sessions to take part and,
therefore, the conclusions derived should not be applied to them.
I hope that Dr Crawley's team will take up this suggestion. Such a
re-analysis of the same data would be a valuable exercise, not only for
more accurate costs but also for recommendations of appropriate
treatment, since those which may be helpful to some people with chronic
fatigue illnesses, may be ineffective or even harmful for M.E.
sufferers. It would also set a new standard of excellence for
increasingly refining experimental design that might be emulated by other=
s.
Yours sincerely
drjohngreensmith@mecommunitytrust.org
Dr John H Greensmith
ME Community Trust.org
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