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 I hope others don't. They seem desperately to be trying to appear to believe that ME is neurological but everything about their language and tone - not to mention support of PACE and the Lightning Process - tells us otherwise.
8 comments:
I agree: it all looks over jolly. But is that really an umlaut on the m or are those two little round heads to make the arches of the m look like people.
Hey Lesley, My immediate response was and still is 'trendy' umlaut, but maybe you are right, and supposed to be people? The researchers behind BACME are not exactly known for their scientific approach - yes, aren't all those young people on the website so well & jolly looking! - so perhaps that influenced my perception.
I have just read their graded exercise section, it is so patronising - and misleading - reads like it is written for a Blue Peter/Play School audience.
I am very glad such centres do not exist in Scotland.
And are the jolly people the researchers?
I am confused.
Yes, I prob need CBT - if I am misinterpreting friendly icons as umlauts.
But BACME are indeed funking up the illness. That is very clear.
'There are several sets of criteria that allow CFS to be diagnosed - variously known as the Fukuda, Oxford or Canadian criteria.'
Therein lies the problem. People being overdiagnosed/misdiagnosed with ME.
But never mind we have the four 'S's!:
'There are a wide range of benefits, which are important for all of us, regardless of our state of health. Some of these relate to the "Four S" categories: strength, stamina, suppleness and stability. Other benefits include a sense of well-being, improved sleep, improved concentration, improved digestion, improved circulation, and keeping the bones and joints healthy.'
Waffle, waffle, waffle...
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.
Oh dear. The Invest in ME statement was crystal clear, wasn't it? It's all just the same old psychologising beneath the clumsy veneer.
'It's all just the same old psychologising beneath the clumsy veneer.'
Greenwords, you have hit the nail firmly on the head, my dear.
Well the jolly faces turn me off immediately. It's so unrealistic it's almost offensive, to tell you the truth!!
Strike that, it IS offensive to me personally. I WISH I looked (and felt!) like that even on the best day ever have!
Post a Comment