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I'm not sure what to think about this booklet which I have just read. It's a glossy coloured booklet with very little content. The content is basically this:
A short section on What is ME.
A set of short fictional 'I am a GP, teacher, consultant...' pieces demonstrating that there is a lot of ignorance and ineffectual or worse attitudes and behaviours from the professionals towards pwME.
A set of short descriptions from patients, carers and supporters giving a flavour of what living with ME is like.
Statements about the need for biomedical research, and centres of excellence, and the IiME initiated European groups for scientists and clinicians.
Comment on the lack of UK government funding for ME research and an appeal for more.
A bit about the Centre of Excellence IiMER is involved in funding in Norwich.
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I think it's intended as a funding appeal document specifically for IiMER and for the Norwich project.
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I don't think it's particularly useful in any other context than fundraising for this specific project. It completely fails to mention any organisations outside the IiMER family of charities and the Norwich centre, giving the impression that they are the only UK ME organisation, and Norwich the only UK research base.
For example, I wouldn't give it to a doctor or teacher or social worker as it only says what not to do, nothing about best practice.
I wish IiMER well with their fundraising efforts and hope the Norwich centre and European organisations get the funding they need. I am not negative about IiMER except in the sense that they plough their own furrow and don't acknowledge the existence of, or cooperate with, any other UK ME organisation.
A short section on What is ME.
A set of short fictional 'I am a GP, teacher, consultant...' pieces demonstrating that there is a lot of ignorance and ineffectual or worse attitudes and behaviours from the professionals towards pwME.
A set of short descriptions from patients, carers and supporters giving a flavour of what living with ME is like.
Statements about the need for biomedical research, and centres of excellence, and the IiME initiated European groups for scientists and clinicians.
Comment on the lack of UK government funding for ME research and an appeal for more.
A bit about the Centre of Excellence IiMER is involved in funding in Norwich.
..........................
I think it's intended as a funding appeal document specifically for IiMER and for the Norwich project.
......................
I don't think it's particularly useful in any other context than fundraising for this specific project. It completely fails to mention any organisations outside the IiMER family of charities and the Norwich centre, giving the impression that they are the only UK ME organisation, and Norwich the only UK research base.
For example, I wouldn't give it to a doctor or teacher or social worker as it only says what not to do, nothing about best practice.
I wish IiMER well with their fundraising efforts and hope the Norwich centre and European organisations get the funding they need. I am not negative about IiMER except in the sense that they plough their own furrow and don't acknowledge the existence of, or cooperate with, any other UK ME organisation.
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It's odd, I read through the booklet, then wrote my summary in the post above, then looked at it again in order to write my news item on it, and realised I'd completely forgotten the section at the beginning on what is ME. I had to edit my post to add it in.
The section of fictional views of professionals was the bit that stuck in my head to the extent that I completely blanked the earlier section. I think because I was concerned by the negativity of that section. I know most of our experiences of professionals is negative, so it was realistic, but I don't like the fact that they didn't give a set of parallel best practice versions.
Anyone reading it would be left with the impression that this is all we can expect from professionals until the holy grail of biomedical research achieves its ends in some future utopia.
The section of fictional views of professionals was the bit that stuck in my head to the extent that I completely blanked the earlier section. I think because I was concerned by the negativity of that section. I know most of our experiences of professionals is negative, so it was realistic, but I don't like the fact that they didn't give a set of parallel best practice versions.
Anyone reading it would be left with the impression that this is all we can expect from professionals until the holy grail of biomedical research achieves its ends in some future utopia.