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

[TiredSam]

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

He's been tweeting in the tone of a bully shitting himself since yesterday.

 

[Trish]

Now talking about Millions Missing and reading the messages on the shoes.

 

[Sasha]

Minister praising Unrest and #MillionsMissing and sticking the boot into the Ricky Gervais sketch. and says he should retract and apologise on Twitter.

 

[Trish]

Talking about stigma. Partly media representation going back to the 1980's. Now quoting the Ricky Gervais bad joke. Raises the issue about mental health. Physical impact has impact on mental health.

 

[Trish]

Research. Government £1.7 billion per year into medical research. MRC welcomes high quality applications blah blah. MRC encourages applications.
Claims there has been a lack of high quality applications for research funds.
NIHR has provided over £3 million for ME research - not biomedical. Justifies this as necessary research into treatment - presumably Crawley's junk research ...

 

[Trish]

Talking about CMRC now.

 

[Trish]

Training. RCGP has online training provision for ME. Funded by NIHR.
Excusing GP's for not knowing 'everything about everything'.
GP assessment includes ME.

 

[Amw66]

Does he always speak this fast, @Keela Too?

I think he must breathe through his ears

 

[Trish]

Treatment. Need to diagnose first. No accurate diagnostic test. Not easy to diagnose. Should be referred to a specialist service where treatment is based on their needs.

 

[NelliePledge]

just reading off the status quo stuff at the moment

 

[Trish]

Care act requires local authority care assessment for severe ME and appropriate care provision provided.

 

[Trish]

Education - legal duty on schools. Guidance blah blah. Should have an individual plan that is flexible etc etc.

He's just reading out the current provision for everything.

 

[Andy]

just reading off the status quo stuff at the moment

Yep, he's just explaining what should happen, not accepting that it often doesn't.

 

[Trish]

NICE guidelines
CBT/GET - many patients disagree. NICE says patients have choice and right to refuse.

 

[Trish]

NICE is the independent expert body... Politicians should not interfere...

 

[Trish]

Carol Monaghan challenging the point about patient choice. No choice if benefits depend on doing GET.

 

[Trish]

DWP assure him fluctuating conditions are considered. Says he will send copy of debate to DWP.

 

[Sasha]

Minister also wants Michael Sharpe to apologise to Carol Monaghan.

 

[NelliePledge]

he will write to DWP Minister about benefits assessment
he will write to RCGP about medical education
NICE are responsible for guidance so not down to him to interfere but he said NICE will be listening to what is said today
MRC are talking to CMRC

 

[Trish]

Concludes by saying today is about 'raising awareness'.
Echoes comment about Sharpe's e-mail.