Wednesday, September 7, 2011

Dr. John Greensmith on ICC

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The M.E. Community Trust.org welcomes the International Consensus
Criteria (ICC) for M.E. (Myalgic Encephalomyelitis), compiled by 26
acknowledged authorities from all parts of the world, from which none is
immune from this dreadfully disabling neurological illness (Myalgic
Encephalomyelitis: International Consensus Criteria, Carruthers et al.,
Journal of Internal Medicine, 22 August 2011 --  Short link:
http://tinyurl.com/44tvs6v).

It not only renders obsolete all previous criteria but calls into
question the trustworthiness of conclusions drawn from the whole
catalogue of research, using the heterogeneous CFS or hybrid CFS/ME,
because of its doubtful validity and reliability  but it also sets a new
benchmark for future research.

We also welcome the pioneering initiative of the Charity Invest in ME to
establish a specialist centre of excellence for diagnosis, research and
treatment in the UK (A new era in ME/CFS research - short link:
http://tinyurl.com/3t7ak2c) to be financed by independently (Let's do it
for ME! - Short link: http://tinyurl.com/3lhsge8) and conducted by
academics free of any conflicting interests.

On an immediate practical level, it challenges the wisdom of giving
treatments recommended by the NICE guidelines of 2007, to people with
M.E. defined by these more discriminatory criteria. We, therefore, call
upon GPs not to refer and clinics to voluntarily suspend treatments,
pending further research, on scientific and ethical grounds. There is
also some relief, since the ICC make it highly unlikely that M.E.
sufferers could have been the same people about whom Professor Simon
Wessely was making unpleasant allegations because they would be too ill
to do so, or take his treatment.

Just as the ICC has displaced previous criteria, it must, itself, be
prepared to be modified and replaced by any even more robust and
discriminatory criteria that would provide a more refined or pure sample
of people with M.E. free of as many possible contaminating variables.

The M.E. Community Trust.org seeks the exclusion of "fatigue" - which
even its advocates describe as "heterogeneous", "ubiquitous" and
"nebulous" - along with its bookends "Chronic" and "Syndrome" as another
known step towards purity of sample to be tested. This would allow us to
identify any obvious similarities and suggest lines of biomedical
research to be pursued, in advance of recommending any treatments at
all. Whether the old guard CFS researchers take the opportunity
themselves, we must test the claims for their treatments with the new,
refined M.E. subjects, in order to verify that they are a discrete
group. Only then should any treatments be suggested.

To be clear about direction of research and degree of purity of samples
to be studied, we call upon every patient representative group, whether
at international, national or local level, having only M.E. in their
name (as opposed to some hybrid or alternative, for example, ME/CFS,
PVFS, CFIDS etc.) to either: adopt the ICC and remove the fatigue
element or clearly re-name itself, in order that M.E. sufferers may
decide whether to affiliate or not.

Since we cannot understand why anyone would choose muddier brown waters
when a clearer blue sea is available, we are committed to these
principles and have greater aspirations and a higher morale than only a
month ago of positive steps towards more reliable research in the hope
of a cure or significant recovery for this awful illness.

Yours sincerely
drjohngreensmith@mecommunitytrust.org
Dr John H Greensmith
ME Community Trust.org

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