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

[Trish]

Quoting Dowsett and Colby research 21 years ago showing ME is largest preventer of children going to school. Child protection often brought it. Powerful speech against this.

 

[Andy]

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

The typical psych sidestep, "oh, well, our 'successful' therapies aren't meant for that illness but something just slightly different".

 

[NelliePledge]

current speaker said Sharpe should apologise

 

[Sasha]

Guy talking now named Michael Sharpe and called on him to apologise (about his email to Carol).

 

[NelliePledge]

This is going well. I was expecting some resistance from other view points, but they don't seem to be starting yet??

no this isnt the house of Lords these people have constituents rather than the old boy network

 

[Dr Carrot]

no this isnt the house of Lords these people have constituents rather than the old boy network

This wouldn’t really happen til the debate got to the HoC. Westminster Hall debates are basically a way to put a case to a ministerial department. We will see what their response is soon...

 

[Keela Too]

All these different speakers, each with a different style, each with a message supporting the patient perspective, is VERY powerful.

 

[NelliePledge]

All these different speakers, each with a different style, each with a message supporting the patient perspective, is VERY powerful.

indeed and the cross party support, and the spread across the country as well lots of different accents

 

[Invisible Woman]

The typical psych sidestep, "oh, well, our 'successful' therapies aren't meant for that illness but something just slightly different".

Hoping no one has noticed that won't work for those either......

 

[Sasha]

Who is the woman talking now?

 

[Trish]

Current speaker thanking for the Briefing paper, and Prof Malcolm Hooper for informing her.

 

[NelliePledge]

@Jonathan Edwards getting quoted

 

[Trish]

Research funding £1 per sufferer, mostly from charities. Not enough.
ME Biobank international reputation, funded by MEA Ramsay Research fund - asking government to contribute.
Flawed PACE trial. @Jonathan Edwards quoted saying it's an object lesson in how not to conduct a trial.

 

[NelliePledge]

Who is the woman talking now?

Sharon Hodgson

 

[Trish]

Flawed or non existent medical education, delayed diagnosis.
Asking for a proper care pathway for swift diagnosis and proper care.
75% of pwme are women - issue of women's pain not take seriously.

 

[NelliePledge]

Minister Steve Brine

 

[NelliePledge]

he has a constituent young person with ME

 

[NelliePledge]

now talking about seeing Unrest

 

[Trish]

Seems to understand ME pretty well. Talking about Unrest.

 

[NelliePledge]

this is substantially different to the 30 minute debate - lets see what he actually comes up with tho