APPG on ME (Myalgic Encephalomyelitis). A cross-party voice in Westminster building change for people with Myalgic Encephalomyelitis (ME)
The All-Party Parliamentary Group on Myalgic Encephalomyelitis (ME) seeks to improve health, social care, education and employment opportunities for people with ME and encourage biomedical research into the cause and treatment of ME.
General election update - In accordance with the APPG rules, from Friday, all APPGs will cease to exist, including this APPG on ME. When the next Parliament is established, all APPGs will need to be reformed. All updates will be posted on this website should this be the case.
On 1 May, last month, Sir Sajid Javid, previously MP for Bromsgrove, lead a debate on ME/CFS research in the Houses of Parliament. ME Research UK (MERUK) gave their report, with explanations, including in particular Houses of Parliament procedures.
Following the ME/CFS debate Robin Walker, previously MP for Worcester, received:
The following quote from Hansard concerns me, particularly as the APPG on ME Inquiry into NHS Service Provision Report Inquiry into NHS Service Provision for people with ME/CFS was published in March 2010, and the 2010 General Election took place just two months later in May 2010.
Hansard 1st May 2024, Volume 749 Column 160WH
“The final delivery plan will be published later this year”. That was the end of last year. We are now in May 2024, approaching exactly two years since I made the initial commitment.
I am also now hearing disturbing reports that, despite two years of waiting, the final delivery plan may not be published until the end of this year. Everyone knows that the Prime Minister has committed the country to a general election by the end of this year. We also know that when that general election is called, there will be no Government publication of any sort, which means there is absolutely no time to waste. I ask the Minister, when he responds, to give a specific commitment to the House that the final delivery plan will be published before the summer recess - or at the very latest, just after.
On 8 May, Robin Walker, previously MP for Worcester, contacted the Department of Health and Social Care concerning the Delivery Plan. The forthcoming General Election was then announced on 23 May, and Robin Walker is standing down as the Worcester MP. A response [jpeg, pdf below] dated 5 June from the Department of Health and Social Care has since been received explaining “What happens on the issue of ME/CFS in the future will be a matter for the incoming Government”. It is understood that the new Worcester MP will receive information concerning the published: My full reality: the interim delivery plan on ME/CFS, and this will be followed up.
Letter from Department of Health and Social Care dated 5 June 2024 |
May 23, 2024
We are aware the general election causes concern for many people within the ME community in relation to the progress of the Delivery Plan.
We have been assured on numerous occasions that the Plan holds cross-party support and expect work to continue as planned.
Parliament will be dissolved on 30 May meaning all MPs will lose their parliamentary status and their access to parliamentary resources.
Following the general election, we will work collaboratively to reconstitute the APPG. This will require an inaugural meeting to be held and new officers elected. An application will be submitted to register the APPG and the APPG will only exist once the Registry Office has approved its inclusion on the APPR Register. The Guide to the Rules for APPGs can be found HERE.
June 13, 2024
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