Firestormm
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19 January 2012: http://www.nytimes.com/2012/01/20/h...many-study-suggests.html?pagewanted=1&_r=1&hp
LBRB: Provides some more background re: Autism proposals and who's behind them: http://leftbrainrightbrain.co.uk/20...LeftBrain/rightBrain+(Left+Brain/Right+Brain)
I was reading the NYT article and I couldn't help but think again about the possible implications should something similar come about for my condition.
Even if, for example, the ICC ME were to be adopted as it currently stands, there is a very good chance (in theory at least) that many people with my diagnosis will find themselves in a similar situation as those currently diagnosed with autism (should that new definition go through).
Or put it another way, if the criteria are tightened up for CFS/ME for good reasons the result would still in theory be the same: people who were told they had 'ME' and/or 'CFS' could find they don't any longer.
When we have debated the pro's and con's of tightening criteria, redefining the condition, adopting new criteria - we don't really talk about the chances of any of us suddenly finding we are on the outside looking in.
I could argue I suppose that I don't currently 'enjoy' the same level of support and care that someone with severe autism might in theory receive and that by tightening/redefining my condition one of the benefits would be better support/care/treatment/understanding - but this is an assumption is it not?
We kind of assume I think that those 'left outside' of any 'new' definition will be in a better place almost. Like they will be reassigned to the correct 'pot' and receive more appropriate treatment and support - but what if we aren't included in the new ME 'pot'?
Anyway, reading that article (and I know of the criticisms and of the chances it may not be implemented) just made me think again about my own condition and what some are calling for in terms of change.
Careful what you wish for? I dunno. Maybe...
LBRB: Provides some more background re: Autism proposals and who's behind them: http://leftbrainrightbrain.co.uk/20...LeftBrain/rightBrain+(Left+Brain/Right+Brain)
I was reading the NYT article and I couldn't help but think again about the possible implications should something similar come about for my condition.
Even if, for example, the ICC ME were to be adopted as it currently stands, there is a very good chance (in theory at least) that many people with my diagnosis will find themselves in a similar situation as those currently diagnosed with autism (should that new definition go through).
Or put it another way, if the criteria are tightened up for CFS/ME for good reasons the result would still in theory be the same: people who were told they had 'ME' and/or 'CFS' could find they don't any longer.
When we have debated the pro's and con's of tightening criteria, redefining the condition, adopting new criteria - we don't really talk about the chances of any of us suddenly finding we are on the outside looking in.
I could argue I suppose that I don't currently 'enjoy' the same level of support and care that someone with severe autism might in theory receive and that by tightening/redefining my condition one of the benefits would be better support/care/treatment/understanding - but this is an assumption is it not?
We kind of assume I think that those 'left outside' of any 'new' definition will be in a better place almost. Like they will be reassigned to the correct 'pot' and receive more appropriate treatment and support - but what if we aren't included in the new ME 'pot'?
Anyway, reading that article (and I know of the criticisms and of the chances it may not be implemented) just made me think again about my own condition and what some are calling for in terms of change.
Careful what you wish for? I dunno. Maybe...