Am boring myself rigid with all this ME talk last few days, I'd much rather talk about books and writing, and not be in tears, but the quackery and fuckery MUST be challenged, so that we can have peace to live our lives. Really. And this is just too gorgeous not to post:
A wee snippet:
Problem
The label ‘chronic fatigue syndrome’ (CFS), coined in the 1980s, has persisted due to lack of knowledge of its etiologic agents and pathophysiology. Misperceptions have arisen because the name ‘CFS’ and its hybrids ME/CFS, CFS/ME and CFS/CF have been used for widely diverse conditions. Patient sets can include those who are seriously ill with ME, many bedridden and unable to care for themselves, to those who have general fatigue or, under the Reeves criteria, patients are not required to have any physical symptoms. There is a poignant need to untangle the web of confusion caused by mixing diverse and often overly inclusive patient populations in one heterogeneous, multi-rubric pot called ‘chronic fatigue syndrome’. We believe this is the foremost cause of diluted and inconsistent research findings, which hinders progress, fosters scepticism, and wastes limited research monies.
Solution
Myalgic encephalomyelitis, a name that originated in the 1950s, is the most accurate and appropriate name because it reflects the underlying multi-system pathophysiology of the disease. Our panel strongly recommends that only the name ‘myalgic encephalomyelitis’ be used to identify patients meeting the ICC because a distinctive disease entity should have one name. Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification.
See how much progress scientists and doctors can make when the lunatic fringes - yes, it's unpleasant to be unfairly labelled, isn't it? - Wesselyites, be they doctors, journalists, or members of the public who swallow any narrative presented in a newspaper article - stay the hell out of it!
The Primer link is really worth looking at, it is easy to read, lovely colours, not drab and clinical. It explains why everyone gets so upset.
Thank you.
* And a lovely new review of The State of Me. I like that Katie recognises the writing of it half killed me. I'm not sure that everyone does.
Problem
The label ‘chronic fatigue syndrome’ (CFS), coined in the 1980s, has persisted due to lack of knowledge of its etiologic agents and pathophysiology. Misperceptions have arisen because the name ‘CFS’ and its hybrids ME/CFS, CFS/ME and CFS/CF have been used for widely diverse conditions. Patient sets can include those who are seriously ill with ME, many bedridden and unable to care for themselves, to those who have general fatigue or, under the Reeves criteria, patients are not required to have any physical symptoms. There is a poignant need to untangle the web of confusion caused by mixing diverse and often overly inclusive patient populations in one heterogeneous, multi-rubric pot called ‘chronic fatigue syndrome’. We believe this is the foremost cause of diluted and inconsistent research findings, which hinders progress, fosters scepticism, and wastes limited research monies.
Solution
Myalgic encephalomyelitis, a name that originated in the 1950s, is the most accurate and appropriate name because it reflects the underlying multi-system pathophysiology of the disease. Our panel strongly recommends that only the name ‘myalgic encephalomyelitis’ be used to identify patients meeting the ICC because a distinctive disease entity should have one name. Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification.
See how much progress scientists and doctors can make when the lunatic fringes - yes, it's unpleasant to be unfairly labelled, isn't it? - Wesselyites, be they doctors, journalists, or members of the public who swallow any narrative presented in a newspaper article - stay the hell out of it!
The Primer link is really worth looking at, it is easy to read, lovely colours, not drab and clinical. It explains why everyone gets so upset.
Thank you.
* And a lovely new review of The State of Me. I like that Katie recognises the writing of it half killed me. I'm not sure that everyone does.
No comments:
Post a Comment