Below are copies of the Conservative Manifesto and the Costings Documents:
|'The Conservative and Unionist Party Manifesto 2019: Costings Document'|
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The contact information for the Worcestershire MPs is on the links page.
Below are copies of the Conservative Manifesto and the Costings Documents:
You can read the Appropriate ME Treatment Debate transcription in Hansard, watch the full debate on YouTube, and see reports information below.
The #MEAction Network detailed report -
‘Historic Parliamentary Debate Shaped by People with ME’ highlighted that Stephen Pound MP made an especially rousing contribution to the proceedings, declaring that:
“This House recognises the reality of your condition. This House will not sit idly by while you suffer. This House will not ignore you. This House will devote its intelligence and its resources to research, ultimately to resolve and to cure, this terrible condition (…). ME sufferers the world over must know that this House and this nation is finally speaking for you.”
The #MEAction Network told us “Over 40 MPs from across the political divide sat in the House of Commons to debate a motion on myalgic encephalomyelitis (ME), with 27 making impassioned contributions on behalf of their constituents.” and gave us links to all MPs who spoke.
The ME Association’s (MEA) press release highlighted - ‘Parliamentary Debate: Kids being taken into care by medics who refuse to believe ME is real’.
The MEA press release states - ‘MP Carol Monaghan, who brought today’s motion, led calls for more funding for research and better medical training to help support patients.’ MP Carol Monaghan said - “Leading up to this debate, I have been asked repeatedly what I hope to achieve. Ultimately what I want, and what the ME community wants, is better treatment and care for those with ME.”
The MEA report includes ‘Comment on the Debate’ by Dr Charles Shepherd, Hon. Medical Adviser, M.E. Association; plus a list of MPs who were present. Also it draws attention to child protection proceedings, suspension of controversial therapies, improving medical education, and research funding.
Action for ME (AfME) pointed out that they will be working with Forward ME to share the results of its survey for NICE on CBT and GET with MPs, once the report has been published.
Please share your experiences. See our blog earlier this month - NICE CBT and GET Patient Survey - Please complete by 31 January.
ME Research UK (MERUK) gave a summary and commentary on ‘Commons Debate 24 January 2019’. The MERUK report explained that “regrettably, pressure of time meant that MPs were asked to limit their speeches progressively from 4 to 3 and then to 2 minutes apiece and so much useful comment was probably left unsaid and the opportunity to make specific points lost. Nevertheless, 27 backbench MPs had the opportunity to contribute to this important debate.”
Prior to the debate, MERUK gave a ‘Background to House of Commons Debate’ article, explaining the research situation.
M.E. Parliamentary Debate, in the House of Commons, Thursday, 24 January, 2.00pm. (Motion quoted further below.)
All Worcestershire MPs are encouraged to attend this important debate secured by Carol Monaghan MP. Write to your MP.
Robin Walker, MP for Worcester, said “I believe that research into this area is vital”, in a letter following the M.E. debate held in June 2018.
On 24 January, biomedical research will be amongst a number of major issues and concerns raised.
These are referred to in the motion:
“That this House calls on the Government to provide increased funding for biomedical research into the diagnosis and treatment of M.E., supports the suspension of Graded Exercise Therapy and Cognitive Behaviour Therapy as means of treatment, supports updated training of GPs and medical professionals to ensure they are equipped with clear guidance on diagnosis of M.E. and appropriate management advice to reflect international consensus on best practice, and is concerned about the current trends of subjecting M.E. families to unjustified child protection procedures.”
These issues and concerns are described in more detail in the briefing document that has been prepared and supported by national charities, who are members of the Forward ME group of charities.
The ME Association, and Action for ME give full information on this week’s debate.
The June 2018 debate is available to watch on Youtube, and you can read the full Hansard transcript.
Here is the Hansard information following the debate -
Recognition of Fibromyalgia as a Disability and Fibromyalgia: Diagnosis.
Video of debate on parliamentlive.tv (available for download or as audio only).
And, here is the information available prior to the debate -
House of Commons Library: Recognition of fibromyalgia as a disability
"This pack has been prepared ahead of the debate to be held in Westminster Hall on Tuesday 15 January 2019 from 9.30-11am on recognition of fibromyalgia as a disability. The debate will be opened by Toby Perkins MP."
Download the full report Commons Library debate pack - Recognition of fibromyalgia as a disability (PDF, 257.88 KB)
Full debate - available to watch on Youtube, and read the full Hansard transcript.
Also, the complete Ministerial response from a ME Association article - the Parliamentary debate on M.E. treatment and research.
Since the debate - Reports from the ME Association (MEA) and Action for ME (AfME):
ME Association: MPs demand more biomedical research for cruel ‘death sentence’ disease | 22 June 2018
MPs demanded more funding for research into a cruel “death sentence” disease affecting 250,000 people in the UK - and the immediate end to NHS-recommended treatments that are making patients worse.
Action for ME: Parliamentary debate on M.E. - our summary June 21, 2018
“At the moment M.E. receives practically no funding in terms of biomedical research…the treatments that are currently available are often more damaging to the person than no treatments at all.”
A 3-hour Westminster Hall debate on Myalgic Encephalomyelitis (ME) treatment and research has been scheduled for Thursday, 21st June, 1:30-4:30 p.m.
The ME Association, #MEActionUK, Action for ME and The ME Trust, jointly produced a parliamentary briefing for use by MPs in the debate. This briefing is intended as a comprehensive resource for MPs, to provide any extra information required to supplement the concerns raised by their constituents.
Encourage your MP to attend - forward the Parliamentary Briefing, and describe how you are affected by M.E. Scroll down here for all Worcestershire MPs’ contact information.
Further information from -
UK: Urge your MP to attend the 21st June debate on ME.
The ME Association:-
Carol Monaghan and other MPs secure Westminster Hall debate on M.E. | 07 June 2018.
NICE decides to Fully Update its guideline on ME/CFS! | 20 September 2017
Action for ME:-
Westminster treatment and research debate confirmed. -
An MP is calling for a debate into one of the ‘biggest medical scandals’ of the 21st century.
The truth about NHS research funding that should shame the government.
PACE trial and its effect on people with ME - debated by MPs in Westminster Hall on 20 February.
Video (11.00 - 11.30 am), and official Hansard transcript from the PACE Trial debate now available.
Action for ME gave a summary, and the ME Association a detailed report.
Carol Monaghan: SNP MP leads debate on ‘one of the biggest medical scandals of the 21st century’.
Discussion on Science for ME website.
On 20th February, MPs will debate ‘The PACE trial and its effect on people with M.E.’
The debate will take place in Westminster Hall at the House of Commons on Tuesday 20th February, from 11.00. to 11.30 am. (If not on BBC Parliament should be on www.parliamentlive.tv).
From Carol Monaghan: SNP MP secures debate on controversial DWP-funded ME trial. Commenting ahead of the debate, Carol Monaghan MP said:
“I am pleased to have secured this important debate on 20 February, and would urge anyone who has been affected to get in touch with me.
From ME Association: Westminster Hall Debate: The PACE trial and its effect on people with M.E. - A meeting with Carol Monaghan MP | 08 February 2018
What can you do?
You can provide Carol Monaghan with information about your personal experiences of graded exercise therapy, cognitive behavioural therapy, or of how the PACE trial and its media coverage etc. may have affected you or your treatment.
Please contact her by email: email@example.com in advance of the Westminster Hall debate on February 20th.
You can also write or email your local MP to invite him/her to attend the debate, or alert them to it via social media.
The documentary 'Unrest' will be at Warwick Arts Centre,
Sun 10 Dec 2017, 2pm.
'When Harvard PhD student Jennifer Brea is struck down by a fever that leaves her bedridden, she sets out on a virtual journey to document her story as she fights a disease that medicine forgot.'
Current and future screenings of Unrest around the country.
ME Association: BBC Breakfast interview with Jennifer Brea and Dr Charles Shepherd (with YouTube video and Transcript).
ME Association: MPs attended a parliamentary screening of ‘Unrest’
ME Association review of Unrest in Parliament: “I cannot recall a parliamentary meeting where we have had so much genuine interest in ME/CFS” | 26 October 2017
Ted talk from Jennifer Brea: What happens when you have a disease doctors can't diagnose (from 2016)
PIP Medical Assessments with CAPITA - Dr Charles Shepherd (ME Association) to be at House of Lords meeting - Oct 2016
Request for comments or questions – positive or negative about a DWP medical assessment that has been carried out by a CAPITA health professional - before 9pm October 24 2016.
From ME Association news.
PIP Medical Assessments with CAPITA | meeting at House of Lords next Tuesday | 21 October 2016
I will be at a House of Lords meeting with the Countess of Mar on next Tuesday (October 25) where there will be a representative from CAPITA attending to give a presentation and answer questions about the medical assessments they carry out for Personal Independence Payments (PIP) on behalf of the Department for Work and Pensions (DWP).
If you have any comments or questions – positive or negative – that are relevant to a DWP medical assessment that has been carried out by a CAPITA health professional that could be made use of in this meeting please post them here, or to me via: firstname.lastname@example.org
I will need them by 9pm next Monday (October 24) 9pm at the latest.
Information on PIP outcomes from the
September MEA website survey on PIP:
Have you applied for a Personal Independence Payment (PIP) from the DWP? If so, what was the initial decision on your claim?
Refused at initial application (24%, 53 Votes)
Refused on appeal (5%, 10 Votes)
Awarded care and mobility at either rate (26%, 57 Votes)
Care only at enhanced rate (0%, 1 Votes)
Care only at standard rate (7%, 16 Votes)
Mobility only at enhanced rate (1%, 2 Votes)
Mobility only at standard rate (5%, 12 Votes)
Application in progress (8%, 18 Votes)
I’m not applying for PIP (24%, 53 Votes)
Total Voters: 222
Dr Charles Shepherd
Hon Medical Adviser
The ME Association