Here is a link to the 5 minute BBC report on Saturday morning about NICE being in trouble over its ME guidelines.
I hope you have a smooth ride with YouTube, mine judders and stops repeatedly - I have tried updating Adobe flashdance or whatever the hell it's called but that bastard Google bar installed itself. I am in a bad mood, almost every scrap of energy I have has been used on the CiF thread this weekend. Perhaps I should have saved it for other things, but I had to speak up.
One of the doctors in the studio, Dr Charles Shepherd, medical adviser to the ME Association, says that ME and CFS are two different illnesses. This is what those of us with genuine ME have been saying for years, but NICE in its infinite lack of wisdom has failed to recognise this. (I never refer to ME as CFS, only in these post labels as a lot of readers would think ME was just 'me' capitalised, and ME/CFS is more or less recognised.)
Before you nuke me, this is not to say that those with CFS aren't ill too, but it is simply not the same illness. You may even hear of some people with CFS saying it is the best thing that ever happened to them as it forced them to slow down and reconsider their careers, lifestyles etc. I'm sure PWME would be universal in saying their illness was the worst thing that had happened to them.
Okay, that is enough. I am so bored with myself talking about this.
I hope you have a smooth ride with YouTube, mine judders and stops repeatedly - I have tried updating Adobe flashdance or whatever the hell it's called but that bastard Google bar installed itself. I am in a bad mood, almost every scrap of energy I have has been used on the CiF thread this weekend. Perhaps I should have saved it for other things, but I had to speak up.
One of the doctors in the studio, Dr Charles Shepherd, medical adviser to the ME Association, says that ME and CFS are two different illnesses. This is what those of us with genuine ME have been saying for years, but NICE in its infinite lack of wisdom has failed to recognise this. (I never refer to ME as CFS, only in these post labels as a lot of readers would think ME was just 'me' capitalised, and ME/CFS is more or less recognised.)
Before you nuke me, this is not to say that those with CFS aren't ill too, but it is simply not the same illness. You may even hear of some people with CFS saying it is the best thing that ever happened to them as it forced them to slow down and reconsider their careers, lifestyles etc. I'm sure PWME would be universal in saying their illness was the worst thing that had happened to them.
Okay, that is enough. I am so bored with myself talking about this.
2 comments:
I've watched the BBC piece too. Stephe Ralph's link works better than You Tube's I found.
(http://www.meactionuk.org.uk/BBC_Breakfast_-_NICE_-_171107_Compact.wmv)
Also been reading the post re. Ann Robinson's piece in the Guardian including your contributions.
I feel guilty now because I feel I should be up there too, shoulder to the wheel in solidarity with you and the other posters but too shot this weekend. I'm sure you feel spent by all the frustration and the effort of putting coherent arguments together for the Message Board but well done and thanks for making all that effort when others, like me at the mo., just cannot manage it.
P.S. I'm thinking of making a new Sock Monkey called Wessley that's specifically designed for kicking, throwing round a room or being savaged by the dog ;-)
Cusp, I'm already putting my order in for that sock monkey!
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