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Bristol Evening Post Letters.
The research announced at Frenchay Hospital (Leading research into fatigue syndrome, Bristol Evening Post, 16 December 2011 - http://www.thisisbristol.co.uk/Leading-research-fatigue-syndrome/story-14154729-detail/story.html) will be studying people who have chronic fatigue. The results will be applied to people who suffer with M.E. (Myalgic Encephalomyelitis), since it is often said that M.E. "is also known as" Chronic Fatigue Syndrome (CFS). Indeed, it is often said but it is not justified. Sometimes the terms are written as the hybrid, or conjoined, CFS/ME.
This has produced a conundrum, which is worth trying to unravel, in order to see why there has been so little progress in understanding M.E. Firstly, doctors, researchers and patient representatives have been known to use the terms in incomparably different ways, for example: (1) M.E. as a subset of a plural diagnostic term CFS (CFS/ME); (2) CFS as a single illness, with no acceptance of M.E. at all; (3) M.E. and CFS as identical and, therefore, wholly synonymous and interchangeable terms and (4) perhaps, most incredibly, all of the above, on different occasions. Secondly, in the absence of a universally agreed diagnostic test for M.E. such as a blood test or scan, as many as 5 different sets of diagnostic criteria are used to select samples of patients for study, sometimes more than one type in the same study. The NICE guidelines, 2007 will probably be used, though perhaps not exclusively, even though they have been superseded by a proposed International Consensus Criteria in a paper co-written by 26 specialists from around the world (Carruthers et al.), suggesting that M.E. is treated separately from CFS, which has largely been ignored. In plain layman's terms, they are not comparing like with like, either subjects with a single study, or one study with another
The serious concern of people with M.E. is that, unless these fatal flaws in research are pointed out, they will be missed by doctors, especially GPs, for whom the results of the research are intended for guidance in best practice, since they would automatically assume these are well conducted studies. It may be, therefore, that a treatment which may be beneficial for someone with a chronic fatigue condition might be ill advised for an M.E. sufferer. For example, a survey by Action for ME (AfME) for Awareness Week 2008, showed that a majority of people were made worse after Graded Exercise Therapy (GET), a finding supported by anecdotal evidence and all research evidence to date (Twisk & Maes 2009) that Cognitive Behaviour Therapy (CBT) is ineffective and Graded Exercise may set patients back irrecoverably. Astonishingly, AfME are in line with most patient organisations in calling for extending the service, which offers these two treatments, in NHS chronic fatigue units around the country, such as Frenchay, where this work is being conducted.
With such lack of experimental controls, including bias in the subjects sampled, as severely affected people cannot travel to take part, the statistics are bound to be distorted, since there are likely to be many more with CFS than M.E.; conclusions deduced from CFS, cannot be applied to people with M.E., since there may have been few, if any, in the sample studied and recommendations for treatment, which may be beneficial to some with CFS, may be ineffective or even harmful for M.E. sufferers. Yet there is another quarter of a million pounds funding for the same failed behavioural management techniques and not a penny for more promising biomedical research.
This is not intended as destructive, but constructive, criticism. There is a better way. This Research Psychologist, diagnosed with Myalgic Encephalomyelitis in 1988, believes that it is possible to identify a more "pure" group of M.E. sufferers, without the variables "fatigue" - which even its advocates admit is "heterogeneous", ubiquitous" and "nebulous" - and its bookends "chronic" and "syndrome". Until these contaminating variables are eliminated we shall make no progress with a discrete illness, which has a physiological cause and underlying disease process that continues to devastate the lives of millions of people worldwide.
Yours sincerely
drjohngreensmith@mecommunitytrust. org
Dr John H Greensmith
ME Community Trust. org
I hope that no one will lose the opportunity to send an e-mail to the newspaper, epletters@bepp.co.uk AND ALSO comment under the original article http://www.thisisbristol.co.uk/Leading-research-fatigue-syndrome/story-14154729-detail/story.html (whether your view is that M.E. and CFS are the same and this is the best approach to research and treatment OR you agree with me that they are not, it is fatally flawed and keeping people with M.E. ill OR something else) but then use at least the same amount of energy expressing such things, sometimes vehemently, on every online group, forum, or social networking site I visit. The volume and quality of public M.E. Awareness will be reflected in your efforts. Best wishes for a Happy Christmas and a Healthier New Year.
Bristol Evening Post Letters.
The research announced at Frenchay Hospital (Leading research into fatigue syndrome, Bristol Evening Post, 16 December 2011 - http://www.thisisbristol.co.uk/Leading-research-fatigue-syndrome/story-14154729-detail/story.html) will be studying people who have chronic fatigue. The results will be applied to people who suffer with M.E. (Myalgic Encephalomyelitis), since it is often said that M.E. "is also known as" Chronic Fatigue Syndrome (CFS). Indeed, it is often said but it is not justified. Sometimes the terms are written as the hybrid, or conjoined, CFS/ME.
This has produced a conundrum, which is worth trying to unravel, in order to see why there has been so little progress in understanding M.E. Firstly, doctors, researchers and patient representatives have been known to use the terms in incomparably different ways, for example: (1) M.E. as a subset of a plural diagnostic term CFS (CFS/ME); (2) CFS as a single illness, with no acceptance of M.E. at all; (3) M.E. and CFS as identical and, therefore, wholly synonymous and interchangeable terms and (4) perhaps, most incredibly, all of the above, on different occasions. Secondly, in the absence of a universally agreed diagnostic test for M.E. such as a blood test or scan, as many as 5 different sets of diagnostic criteria are used to select samples of patients for study, sometimes more than one type in the same study. The NICE guidelines, 2007 will probably be used, though perhaps not exclusively, even though they have been superseded by a proposed International Consensus Criteria in a paper co-written by 26 specialists from around the world (Carruthers et al.), suggesting that M.E. is treated separately from CFS, which has largely been ignored. In plain layman's terms, they are not comparing like with like, either subjects with a single study, or one study with another
The serious concern of people with M.E. is that, unless these fatal flaws in research are pointed out, they will be missed by doctors, especially GPs, for whom the results of the research are intended for guidance in best practice, since they would automatically assume these are well conducted studies. It may be, therefore, that a treatment which may be beneficial for someone with a chronic fatigue condition might be ill advised for an M.E. sufferer. For example, a survey by Action for ME (AfME) for Awareness Week 2008, showed that a majority of people were made worse after Graded Exercise Therapy (GET), a finding supported by anecdotal evidence and all research evidence to date (Twisk & Maes 2009) that Cognitive Behaviour Therapy (CBT) is ineffective and Graded Exercise may set patients back irrecoverably. Astonishingly, AfME are in line with most patient organisations in calling for extending the service, which offers these two treatments, in NHS chronic fatigue units around the country, such as Frenchay, where this work is being conducted.
With such lack of experimental controls, including bias in the subjects sampled, as severely affected people cannot travel to take part, the statistics are bound to be distorted, since there are likely to be many more with CFS than M.E.; conclusions deduced from CFS, cannot be applied to people with M.E., since there may have been few, if any, in the sample studied and recommendations for treatment, which may be beneficial to some with CFS, may be ineffective or even harmful for M.E. sufferers. Yet there is another quarter of a million pounds funding for the same failed behavioural management techniques and not a penny for more promising biomedical research.
This is not intended as destructive, but constructive, criticism. There is a better way. This Research Psychologist, diagnosed with Myalgic Encephalomyelitis in 1988, believes that it is possible to identify a more "pure" group of M.E. sufferers, without the variables "fatigue" - which even its advocates admit is "heterogeneous", ubiquitous" and "nebulous" - and its bookends "chronic" and "syndrome". Until these contaminating variables are eliminated we shall make no progress with a discrete illness, which has a physiological cause and underlying disease process that continues to devastate the lives of millions of people worldwide.
Yours sincerely
drjohngreensmith@mecommunitytrust. org
Dr John H Greensmith
ME Community Trust. org
I hope that no one will lose the opportunity to send an e-mail to the newspaper, epletters@bepp.co.uk AND ALSO comment under the original article http://www.thisisbristol.co.uk/Leading-research-fatigue-syndrome/story-14154729-detail/story.html (whether your view is that M.E. and CFS are the same and this is the best approach to research and treatment OR you agree with me that they are not, it is fatally flawed and keeping people with M.E. ill OR something else) but then use at least the same amount of energy expressing such things, sometimes vehemently, on every online group, forum, or social networking site I visit. The volume and quality of public M.E. Awareness will be reflected in your efforts. Best wishes for a Happy Christmas and a Healthier New Year.