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.

 

Agree with this - insitutional problems have made everything so much worse.

 

It is not enough say more needs to be done. The right thing also needs to be done. And for that there must the acknowledgment that what is currently being done is wrong.

 

Yep. Basically, we need to start again, pretty much from scratch. No point trying to build something solid on rotten foundations.

 

So is PACE cooking the books on CFS or ME Michael?

 

PACE is about whatever suits his whims and covers his arse. But who cares anymore, his reputation and PACE's are mud.
And any patient can now reject GET and threaten legal action since it was roundly declared unsafe with no objections.

 

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.

 

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)."

 

I'm not sure if this has been mentioned yet, but I liked the comment by Jim Shannon in the debate, "I believe in miracles, but PACE isn't one of them".

 

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.

 

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.

 

Will there be a transcript of the debate? Thank you.

 

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.

 

https://hansard.parliament.uk/

It'll be available tomorrow.

 

Repeating the link to today's debate for those living in time zones that make live viewing difficult or those who have missed it.

It is available to watch here:

https://parliamentlive.tv/Event/Index/3d63c39d-18f3-4cd7-8509-c91785dced98

Bill

 

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