PERMISSION TO FORWARD AND RE-POST ON OTHER FORUMS, SOCIAL NETWORKING SITES AND USE IN NEWSLETTERS. PLEASE TWEET AND RE-TWEET ON TWITTER.
It is often said that the illness M.E. (Myalgic Encephalomyelitis) is "also known as" Chronic Fatigue Syndrome" (CFS). Further, that CFS is preferred by doctors, while patients would rather have M.E, because they believe it implies a more serious illness, though this is not borne out by the number of patients who do use CFS.
The terms are commonly written as the hybrid CFS/ME and, in this order rather than ME/CFS. This produces a conundrum, which is worth trying to unravel, in order to see why there has been so little progress in understanding M.E. If CFS and M.E. are identical, synonymous and interchangeable and CFS is preferred, why not drop M.E. altogether, since nothing would be lost? "M.E." never passes the lips of some influential doctors and researchers, such as Dr Esther Crawley and Professor Simon Wessely; even when asked about M.E., they reply with CFS. One theory is that, if ever an indisputable diagnostic test were discovered for M.E., they would have to admit to having backed the wrong horse.
As long as M.E. is retained, either independently or as part of CFS/ME, there is a separate identity, or perhaps identities, if either or both are plural terms. If CFS is a plural term and M.E. is one of its syndromes, which are the others? I have never heard of another condition being obliquely attached to CFS/. Again, if CFS is plural and CFS and M.E. are the same, then M.E. must also be plural but, if it is, I have not heard of any subsets - not degrees of severity, subsets - said to be subsumed under M.E. unless one reverses the terms to ME/CFS - but then are we not faced with the same dilemmas as with CFS/ME? So, of the choices of definitions and singularity or plurality, which do researchers and representatives choose? We can find evidence of all of them: CFS/ME ("the chronic fatigue syndrome - ME" - Sussex & Kent ME/CFS Society); CFS, singular, ("This illness ..." Dr Esther Crawley "cost of CFS to UK economy" study and elsewhere); synonymous, ('When we use the words, CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome), what we mean is Myalgic Encephalomyelitis (ME)., Gail Kansky, National CFIDS Foundation) and any (An earlier version on Phil Parker's website that they called all illnesses such as CFS, PVFS and Fibromyalgia the same name M.E. has now been amended to that they get similar results when given the Lightning Process, whatever they are called).
In the absence of an agreed diagnostic test, such as a blood test or scan, there are different diagnostic criteria that have been suggested, including Fukuda, Oxford, London, Canadian Consensus, Nightingale and NICE Guidelines. To compound the problems of experimental design further, all of these have been used in different studies, sometimes more than one in the same study, making comparisons impossible.
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.
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
John
M.E. Community Trust. org
It is often said that the illness M.E. (Myalgic Encephalomyelitis) is "also known as" Chronic Fatigue Syndrome" (CFS). Further, that CFS is preferred by doctors, while patients would rather have M.E, because they believe it implies a more serious illness, though this is not borne out by the number of patients who do use CFS.
The terms are commonly written as the hybrid CFS/ME and, in this order rather than ME/CFS. This produces a conundrum, which is worth trying to unravel, in order to see why there has been so little progress in understanding M.E. If CFS and M.E. are identical, synonymous and interchangeable and CFS is preferred, why not drop M.E. altogether, since nothing would be lost? "M.E." never passes the lips of some influential doctors and researchers, such as Dr Esther Crawley and Professor Simon Wessely; even when asked about M.E., they reply with CFS. One theory is that, if ever an indisputable diagnostic test were discovered for M.E., they would have to admit to having backed the wrong horse.
As long as M.E. is retained, either independently or as part of CFS/ME, there is a separate identity, or perhaps identities, if either or both are plural terms. If CFS is a plural term and M.E. is one of its syndromes, which are the others? I have never heard of another condition being obliquely attached to CFS/. Again, if CFS is plural and CFS and M.E. are the same, then M.E. must also be plural but, if it is, I have not heard of any subsets - not degrees of severity, subsets - said to be subsumed under M.E. unless one reverses the terms to ME/CFS - but then are we not faced with the same dilemmas as with CFS/ME? So, of the choices of definitions and singularity or plurality, which do researchers and representatives choose? We can find evidence of all of them: CFS/ME ("the chronic fatigue syndrome - ME" - Sussex & Kent ME/CFS Society); CFS, singular, ("This illness ..." Dr Esther Crawley "cost of CFS to UK economy" study and elsewhere); synonymous, ('When we use the words, CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome), what we mean is Myalgic Encephalomyelitis (ME)., Gail Kansky, National CFIDS Foundation) and any (An earlier version on Phil Parker's website that they called all illnesses such as CFS, PVFS and Fibromyalgia the same name M.E. has now been amended to that they get similar results when given the Lightning Process, whatever they are called).
In the absence of an agreed diagnostic test, such as a blood test or scan, there are different diagnostic criteria that have been suggested, including Fukuda, Oxford, London, Canadian Consensus, Nightingale and NICE Guidelines. To compound the problems of experimental design further, all of these have been used in different studies, sometimes more than one in the same study, making comparisons impossible.
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.
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
John
M.E. Community Trust. org
