My favourite campaining organisation Invest in ME has publicised news of these Guidelines which are at present in draft format and the public are allowed to comment.
Here
In order to formulate these guidelines 399 questionaires were sent out and 219 returned (page 50), 119 from patients, 63 from healthcare proffessionals, 29 from carers, 8 unknowns. Of the 180 who didn't reply nothing is known of those categories of people. There are however some very pertinent comments given as examples (pages52-54). Of 6 published comments 4 refered to the difficulty of the task involved for people with ME. One comment refered to over 450 pages of accompanying notes which needed to be read in order to complete the task.
And that's the point isn't it?? People with ME need to be heard and yet the very instrument which purports to be helping them is geared up to preventing those people from giving their experiences and opinions.
No wonder the psychiatrists and other health care professionals are having a laugh at our expense and disregarding anything we say. Once again the main focus of these guidelines are Cognitive Behavioural Therapy and Graded Excercise Therapy.
Professor Malcolm Hooper stated in 2005 in a document entitled THE GROUP ON SCIENTIFIC RESEARCH INTO MYALGIC ENCEPHALOMYELITIS , (THE GIBSON PARLIAMENTARY INQUIRY) , CONCERNS ABOUT A COMMERCIAL CONFLICT OF INTEREST UNDERLYING THE DWP HANDBOOK ENTRY ON MYALGIC ENCEPHALOMYELITIS / CHRONIC FATIGUE SYNDROME :
Here
In order to formulate these guidelines 399 questionaires were sent out and 219 returned (page 50), 119 from patients, 63 from healthcare proffessionals, 29 from carers, 8 unknowns. Of the 180 who didn't reply nothing is known of those categories of people. There are however some very pertinent comments given as examples (pages52-54). Of 6 published comments 4 refered to the difficulty of the task involved for people with ME. One comment refered to over 450 pages of accompanying notes which needed to be read in order to complete the task.
And that's the point isn't it?? People with ME need to be heard and yet the very instrument which purports to be helping them is geared up to preventing those people from giving their experiences and opinions.
No wonder the psychiatrists and other health care professionals are having a laugh at our expense and disregarding anything we say. Once again the main focus of these guidelines are Cognitive Behavioural Therapy and Graded Excercise Therapy.
Professor Malcolm Hooper stated in 2005 in a document entitled THE GROUP ON SCIENTIFIC RESEARCH INTO MYALGIC ENCEPHALOMYELITIS , (THE GIBSON PARLIAMENTARY INQUIRY) , CONCERNS ABOUT A COMMERCIAL CONFLICT OF INTEREST UNDERLYING THE DWP HANDBOOK ENTRY ON MYALGIC ENCEPHALOMYELITIS / CHRONIC FATIGUE SYNDROME :
as far as ME/CFS is concerned (and in general), the proposed psychiatric “rehabilitation” regimes ie. CBT (cognitive behavioural therapy) and GET (graded exercise therapy) that are to be imposed on UK claimants are poorly researched; they have already been shown to be of no lasting benefit, and they may be harmful: in four surveys of a total of 3,074 ME/CFS patients, 77% of those who had tried CBT found that it either made no difference or made things worse, and of the 1,467 patients who had tried a graded exercise “rehabilitation” regime, 48% found it to be the most harmful intervention.
For this reason I am reading the whole of these proposed Guidelines, all 269 pages of them along with a quick scan of the 646 pages of appendices.
Comment, you bet I will.
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