UK 21 June 2018 | 3-hour ME debate in Westminster Hall, secured by Carol Monaghan

The Minister seemed to miss the point. Much of the little that is done to "help" patients is dysfunctional or harmful. There needs to be some recognition that the current approach has utterly failed. Small incremental improvements are unlikely to have any meaningful impact.

There is little point funding more research when the product of research is studies that grossly distort reality and result in harmful guidance.

What good is teaching doctors about ME when the material they are given includes so much nonsense by the Wessely school. And so on.
 
strategist said:
The Minister seemed to miss the point. Much of the little that is done to "help" patients is dysfunctional or harmful. There needs to be some recognition that the current approach has utterly failed. Small incremental improvements are unlikely to have any meaningful impact.

There is little point funding more research when the product of research is studies that grossly distort reality and result in harmful guidance. And so on.
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yep this is why CM and the group of backbenchers will need to press for a further debate in the House of Commons chamber
 
Is anyone else pissed off at the minister for using Unrest as his vehicle for showing his 'sympathy'?

And then hitting us with his 'business as usual' and 'all the right provisions are in place', and NICE and the MRC are independent so we can't interfere, and GP training is in place etc. And 'this debate was about raising awareness'.

Blah blah blah...
 
Trish said:
NICE is the independent expert body... Politicians should not interfere...
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So what happens if NICE are acting like a bunch of wankers? They apply public policy of health treatments FFS. Who should "interfere" then? No one?

Got an issue with NICE complain to NICE? That's the full line of grievance open to the public?

Even independently owned restaurants are subject to quality checks for obvious reasons.
 
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michael sharpe@profmsharpe PACE is about CFS. Dare I say read the paper.
we can control what is in the paper - not what is in the media - sadly
the media generally appears to call CFS 'ME'
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Michael, have you read the NICE guidelines from 2007?
"This guideline covers diagnosing and managing chronic fatigue syndrome (CFS) which is also known as myalgic encephalomyelitis (ME) (or encephalopathy)."
 
Keela Too said:
I think Carol Monaghan was amazing, and I'm confident that she won't let this go.
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She was so knowledgeable. I have been often told that the situation around ME is so complex, a lot of people will not understand (or will not be interested because it is not a simple straight-forward situation) or they switch off when I try to explain the situation (even if they wanted to know). Carol Monaghan showed everyone that with goodwill and willingness to find out about ME, it is possible.
 
Was I the only one screaming at the screen? I thought it started off well but (yes I know,ever the critic); the issue of the type of CBT dished out to ME/CFS patients was not brought up/explained

Steven Pound was it who kept saying 'encephalomyelitis', then went into a big thing about the children, and saying it might be psychosomatic(?)...........

If he's so worried about the children I would have thought the first thing would be to stop Crawleys 'research'..........

As for the minister, as @Andy has said every sentence almost contained 'should'; well yes that's what they always say even when it's been pointed out time and again what's happening in reality.

I'm sure I will think of more.
 
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I bet the minister just goes away like a shitty journalist and asks the BPS for "their side of the story", then responds with one of their SMC type spinning pack of lies, strawmanning and playing the small vocal minority BS.

Sharpe will probably just refer the minister to the paper and claim people dont understand the science.
 
large donner said:
I bet the minister just goes away like a shitty journalist and asks the BPS for "their side of the story", then responds with one of their SMC type spinning pack of lies, strawmanning and playing the small vocal minority BS.

Sharpe will probably just refer the minister to the paper and claim people dont understand the science.
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Nah. The Minister will have better things to do with his time than approach the BPS School. Now the debate is over he won't give the issue any further thought - unless he's made to do so.

I'm sure Sharpe will follow up with an email or letter. It'll definitely be more politely worded than his missive to Carol Monaghan was.
 
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