UK Parliamentary debate today - Thursday 24th January 2019

Will there be a Hansard transcript of the debate? It seems to me it could provide some very helpful quotes.

Particularly impressed by the many constituents' letters being quoted.

Big thank you to all who wrote their MP!

 

Nicky Morgan (who normally I can't stand) spoke eloquently on our behalf. I agree with you @NelliePledge that a fair few tories spoke for us. Speaking as a Green Party member here.

 

Nick Thomas - Symonds MP
Constituent hopes today will be the day we listen. Reg Hand (sp?) Nephew too ill to visit me and too ill to talk on the phone. 18 years.
They need action.

Liz McInnes MP
Merryn was her constituent. In pain and not controlled. Only a private medical practitioner was the one who told her to cut back activity. If the PACE trial was a drug it would have been banned by now. Mother feels that if Merryn has been given the right advice at the start she would not have developed a severe form of the disease

 

Just concerned there may not be enough for a vote.

 

I think there is always a transcript of any Parliamentary business, there certainly was for the previous ME debate.

 

There's always a Hansard transcript, not just the House of Commons, but all the other ones too. Will be up tomorrow.

 

Oh good. Maybe some will just vote against the government line "as a matter of principle"!

 

Darren Jones MP - won't be able to do justice to constituents - Carol, Anne etc. As a young student it was called in the lab "multiple excuses"
Positive bias in journal, maybe change culture in that environment.

Mohammad Tasin MP - 2 constituents bedridden fro 30 years.
PACE trial NICE - CBT and GET recommended as effective treatments. More recently shown to be x. Suspend CBT and GET in the NHS

Jim Shannon MP - met with a constituent who is suffering. Who is helping the children.
Need to follow international consensus on treating ME. Home visits needed.
Benefits - cannot get PIP, patients who cannot stand in the shower told fit for work

Phillipa Whitford MP
Post viral weeks or months - what is about ME sufferers that it becomes chronic?
Friend who has had ME for 18 years
Chronic Faigue should be chronic exhaustion
No tests so makes it hard for doctors
No treatment, no cure, nothing in the pipeline
CBT doesn't tackle the underlying ME
GET
PACING - some funding from the DWP. Added to malingering. Unblinded. Yet CBT and GET promoted to patients. Lowered outcome when it was shown failing. Some people got worse but were shown a success.
There should be a red warning for CBT and GET saying we are looking at this. Do not do it
DWP need to recognise impact and disability in ME
All if us need to reduce the stigma that adds insult to injury

 

I am a 20 mins behind but was grateful for Stephen Pound's strong statement of recognition and solidarity.

 

Sharon Hodgson - Shadow Health Minister
Thanks various ME groups
Patients waiting up to a year for DX
Not funded at rate of other prevalent diseases
Written answer from Govt confirmed less spent on research compared to 2013
GET found harmful to people with ME
Fund research - mentions invest in ME crowdfunded
Constituent Jennifer Elliot - north east services closed.
Minister consider loss of services - reinstated
Stigma - one in 5 families with a child with ME referred to social services

Steve Brine - Health Minister
Bristol Northwest - best speech
Welcomed the Missing Millions ladies. Sorry it has been so rushed.
We don't understand the cause. Some recover. Not many do.
Fatigue, flu like malaise
Unrest film - powerful
We can't for one minute understand what our constituents are going through
Royal College of GP's includes education- ie online course on ME(!),
Education should include ongoing research
GP's had a hard rap. Spoke to RC of GPs' and asked her to to a "round table"
No single strategy will work for all patient
No one is making this happen. Anyone can stop treatment
Severe mentioned
CBT and GET long term controversial. Understatement. Started with NICE and continued with publication of the PACE trial.
NICE due in October next year and existing guideline will remain in force until then
Will ask NICE for a statement
Every speaker today mentioned research. High quality applications are welcomed.
MRC has a notice and bespoke funding call. High strategic important to the MRC
Ministers don't control research. There have not been research proposals in this space. Stigma and divisions.
Rosalind Amour mentioned (patient)
Fully committed but we need people to come forward with quality proposals

 

Let's see what the Reuters story tomorrow looks like, if there is one.

 

CM quoted 2 UK patients having ME on their death certificates. This is actually incorrect - there was an earlier one, her name was Annabel, but I can't remember her surname just now. She was the first for it to be on her death certificate. Her husband used to post on an email List that I'm on.

 

Rules say they do not have to be present, just there to vote at end.

 

I think that applies only if the voice vote is unclear? ...

(source: wikipedia)