M.E. Community Trust.org response to Myalgic Encephalomyelitis: International Consensus Criteria (7 September 2011)
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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
PERMISSION TO FORWARD AND RE-POST ON OTHER FORUMS, SOCIAL NETWORKING SITES AND USE IN NEWSLETTERS
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