Posted by nmj at 4.5.11 :
So BACME (British Association of CFS/ME) have finally launched their website and are looking for feedback.
I'm immediately alarmed by their 'cool brand, ME with street cred' approach: I think it somewhat trivialises a neurological illness to add an umlaut, make it funky. Do these people think they are selling Scandinavian furniture or yoghurt? And correct me if I am wrong but does the umlaut over 'm' even exist?
Of course, when you look at the names behind BACME - Esther Crawley and Alison Wearden - you realise you just can't take this site seriously - and ... Read more>>
1 comment:
1. ‘This (PACE) trial shows that approaches aimed at staying within limits imposed by the illness are less effective than those that test such limits.’
‘Actively managing your energy and activity each day will help you to stabilise and gradually increase your energy levels. This will give you back a sense of control over your condition. However, within the real world, grading or pacing what we do is very difficult and specialist professionals can help you to apply the principles to your own situation.
Simply untrue. This is offering false hope, with NO mention of the dangers of GET. BACME appear to live in a strange Utopia where no one gets worse with GET.
2.‘Everything that a person does involves activity and effort. This can prove confusing when, for example, they do something very enjoyable for them and are significantly worse afterwards. The main areas of effort include cognitive, physical, social and emotional. In an ill person, effort is also expended in getting better.’
Patronising waffle, what does this even mean?!
3.‘It is useful to know when the person last considered themselves normally well. People can become ill quickly but more often there is a pattern of gradual deterioration with the person adapting to their reduction in capacity until they can’t do that anymore.’
Why no mention of the word ‘virus’ on the whole website???
Photos of funky, ethnically diverse researchers - and ‘m’s that look like umlauts - just don’t cut it, BACME, sorry.
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