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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 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://tinyurl.com/4x3ye8t) 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://tinyurl.com/3zhygnd) 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 more rigorous discriminatory standards, such
as the International Consensus Criteria (Carruthers et al., August 2011 - http://tinyurl.com/44tvs6v) 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 others.
Re: Chronic fatigue syndrome could be costing UK economy ?100m a year, study says
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 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://tinyurl.com/4x3ye8t) 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://tinyurl.com/3zhygnd) 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 more rigorous discriminatory standards, such
as the International Consensus Criteria (Carruthers et al., August 2011 -
http://tinyurl.com/44tvs6v) 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 others.
Competing interests: No competing interests