Yet Another UK Parliamentary 'Debate' on ME - 1 May 2024
Here we go again....
Yet another 'debate' in the UK parliament is set to take place on 1 May 2024 from 4:30pm until 5:30pm [1].
This is very short notice and no information has been circulated - therefore leaving little possibility for Invest in ME Research or others to contribute.
It apparently involves ex-health minister Sajid Javid – who set up the DHSC working group to look at ME two years ago - even though that working group has not even concluded yet.
The meeting has a title - world ME day – by which we suppose that it means International ME Awareness Day which is 12 May.
In 2018 and 2019 Invest in ME research gave extensive comment in its submissions to parliamentary debates on ME [see below).
Nothing changed!
The following documents are statements from the charity on major issues.
Executive Summary
An Executive Summary for MPs has been updated in 2022 and describes the Centre of Excellence proposal and development status.
Debate January 2019
Some of the issues relating to the UK parliamentary debate on 24th January 2019 with also included a one page summary of recommendations
Status of ME 2018
A status of ME document produced by the charity for the parliamentary meeting in 2018 that led up to the 2019 parliamentary debate in UK
NICE Commentary
Comments on NICE guidelines reviews and previous correspondence between the charity and directors of NICE guidelines development
Invest in ME Research asked MPs to consider the following document for last year's' APPG for ME meeting in November (which Invest in ME Research are not allowed to attend)as we felt that MPs should be made aware of developments and status at the centre in Norwich Research Park.
[This document is available at https://tinyurl.com/appg-for-me-november2023 ]
Invest in ME Research is a UK charity committed to advancing the understanding and treatment of myalgic encephalomyelitis (ME or ME/CFS). The charity has been actively advocating and working towards the establishment of a Centre of Excellence for ME since 2011, situated within the promising grounds of Norwich Research Park.
In August 2022, we submitted a proposal to the DHSC/UKCRC Research Working Group, outlining what we believe is the most efficient, cost-effective, and forward-thinking approach to enhancing our knowledge of the aetiology of ME and developing treatments. This proposal represents a significant step toward building capacity and expertise in the field. This document contains the relevant extract taken from that document.
We believe the establishment of a Centre of Excellence for ME at Norwich Research Park aligns perfectly with the APPG's mission to facilitate change in the ME landscape.
For more detailed information and insight into our proposal, we encourage you to review the accompanying document, 'Executive Summary for MPs‘ regarding the Centre of Excellence for ME development, which can be accessed at this link -
https://tinyurl.com/UK-Centre-of-Excellence-for-ME .For additional inquiries or to discuss this proposal in more detail, please feel free to reach out to us directly,
Kathleen McCall
Chairman Invest in ME Research
