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

[AR68]

Current speaker making a good point about denial, injustice and neglect of ME

Kerry McCarthy?

 

[NelliePledge]

Current speaker making a good point about denial, injustice and neglect of ME

I think its the Bristol MP who turned up to the backbench committee cant remember her name

 

[Trish]

Assessments for benefits don't take account of fluctuation and after effects of doing things.

 

[Simone]

“Decades of underinvestment” has resulted in many “lives unlived”.

 

[Trish]

'Shame on the academic who told Carol M she shouldn't be doing this debate' Good to have that on the record again about Sharpe.

 

[NelliePledge]

good comment now saying shame on the academic 'I cant remember his name' who reprimanded CM

@Trish beat me to it

 

[Trish]

Talking about Helen Hyland of the MEA who is a constituent of his and provided him with information. Her husband took his life a year after he was diagnosed with ME.

 

[Trish]

Importance for patients of validation that it's a genuine medical condition.

 

[Trish]

Constituent was a therapist and had to give up work with severe ME. Left to manage on her own once GP couldn't do any more. GET made her more severe. Telephone appointment with GP occasionally. Good description of what it's like to have severe ME and be isolated.

 

[LightHurtsME]

Ed Davey's story of a constituent being told 'all ME patients are crazy... except you' ties in exactly with an experience I had. A GP told me 'no, you're properly ill with something you got from India. Not like all those women who just won't get out of bed.

I have been told a variation of that too.

 

[Trish]

Current speaker is 'an old friend' of Dr Ian Gibson. Government needs to recognise the appalling way sufferers have been treated. Sometimes doctors get things wrong. Example - doctors used to tell people to start smoking as good for their health. Evidence needs to be accurate. PACE is bad science.

 

[Trish]

Now Merryn Crofts' MP.

 

[NelliePledge]

Now Merryn Crofts' MP.

 

[Trish]

Very powerful speech by Merryn's MP.

Now an MP telling patients' stories. Says the common theme is invisibility.

 

[TiredSam]

I'm watching this about an hour behind everyone else. The boss guy has just said the "wind-up speeches" will be starting at 16:00. He obviously hasn't been following Michael Sharpe's twitter feed, or he'd know they started some time ago.

 

[Keela Too]

Is MS back-pedalling? Look what he's tweeting now (okay 2 hours ago, so before this debate)

 

[Invisible Woman]

Thanks for the comments guys. I can't handle more than a few minutes at a time and will be eagerly waiting for the transcript.

Your posts help me feel less cut off.

Oh, to be there!

 

[Liv aka Mrs Sowester]

MS has been backpedalling and trying to control the narrative for the last 24hours at least. It's been quite pathetic imo.

 

[Trish]

Steven Pound now. ME is the illness with the worst public relations, so much stigma and nonsense.

 

[NelliePledge]

Stephen Pound talking about Children quoting Dowsett now talking about child protection