UK Parliamentary debate today - Thursday 24th January 2019

Time reduced to 3 mins per person now. That's difficult for anyone!

David Drew speaking as Dr Charles Shepherd's MP. Overlap with B12 deficience can be confused with ME.

 

https://twitter.com/user/status/1088468526338400256

 

Stephen Kerr -MP Constituent Denise is too sick to leave bed for months at a time. Neurologist in major hospital told her no such thing as ME and at least you have nothing serious.
Constituent Cathy Dixon given dangerous advice as doctors did not understand ME. Also another constitute whose only support if her family.
ME patients cannot wait for NICE guidelines to be reviewed.
Biomedical research needed. People need help.

Kelvin Hopkins MP - False hope from psychological therapies. Exercise is like expecting frost bite suffers to be given extra x.

(my note he speaks too quickly for me but it is good!)

Stephen Pound MP - one area not brought forward. People with ME often have specific housing needs and find it intensely difficult because of her condition. Sleep all night and still exhausted.
We need to move forward from the stiff upper lips. Must change attitude using data available.
Ignored, belittled - this house understand you, this house and this nation is finally speaking for you

Karen Lee MP. Mentions screening of Unrest. ME poses unique difficulties. Unjust stigma institutionalised into welfare and medical institutions. Stigmatised and misinformed medics. DWP doesn't understand. Tory welfare cuts.

 

Why were the speakers of the previous debate not also time limited??

 

Speakers are limited this time due to the over-run of the earlier Parliamentary business, presumably last time everything was running to schedule.

 

"Recommending exercise seems as sensible to me as asking frostbite sufferers to walk about in the snow" - Kelvin Hopkins

 

But we have less time as they went over time!!

 

Agree it was also important but so are we!

 

Can discuss later?

 

Oh, sorry, I thought you were referring to the previous ME debate, my bad. I have no answer then.

 

Ben Lake MP - ME affects more people than MS and Parkinson's combined. Yet beggars belive that leaves 25% bedbound or housebound and 95% (My note - not sure I got the right figure) don't recover.
Constitute John Peters missed out on the big things in life.

Liz Twist MP. Mentions constituent Pauline Donaldson. CBT and GET are still being put forward for what is a physical condition.
Shocked patients and families funding research.
CBT and GET, many patients demanded stopped.
Better GP training
Child protection
One constituent described - Every aspect of my life changed, lost his job, climbing stairs and found CBT and GET made him worse.

Deputy speaker - cut speaking time now to 2 mins

 

Pity not more MPs in there.

 

I hope Sir Simon is watching. And Sharpe, White, et al.

 

Probably from within the SMC offices.

 

According to CM this is very good for a Thursday afternoon

 

Ben Lake, Plaid Cymru, was very touching speaking of 2 of his constituents.

 

I think it's worth pointing out the far greater numbers of MPs on the opposition bench compared to on the Govt side.

 

I'm sure they're planning to push-back on this and present it as a dangerous example of Post-Truth politics & emotion threatening Science.

I wonder if others in UK science are getting nervous about gambling the public reputation of UK science on the PACE trial?