Westminster Hall debate on ME - an update and statement

Video Update from our CEO

Following the Westminster Hall debate held on Wednesday 1 May 2024, ahead of World ME Day, our Chief Executive, Sonya Chowdhury provided the following video update.

You can view the debate on Parliament TV (timestamp - 16:30:20), here.

The full transcript is available in the Hansard, here.

Action for ME statement

Despite the local elections requiring many parliamentarians to be out campaigning, we were delighted to still see a good number of MPs attend this crucial debate on ME, ahead of World ME Day.

A critical aspect of a Westminster Hall debate is for a Minister and Shadow Minister to respond during the debate therefore raising critical issues with them.

The debate has raised vital awareness of ME within Parliament, with all MPs and Peers having received a detailed briefing on the condition and from hearing the official response from the Minister for Health and Secondary Care.

We heard from MPs regarding many topics such as:

• the urgent need for research funding into the condition
• the need for the NICE Guideline for ME/CFS to be fully implemented and followed
• the need to address the research gender bias that exists
• the ground-breaking work of DecodeME and LOCOME
• the link between ME and Long Covid

We also heard of personal experiences shared by constituents of MPs who attended the debate and also of the recent, tragic cases of Millie, Carla, and Karen.

Whilst we are pleased that the Westminster Hall debate has raised awareness of and highlighted so many of these important issues, we recognise and share the frustrations regarding the delayed publication of the full Delivery Plan on ME/CFS and the lack of communication surrounding its delay.

We were able to raise this directly with the Minister in a meeting after the debate and seek reassurance that he is driving the launch of the Delivery Plan.

We also raised the need for communication with the community about when it will be launched and an explanation for delays.

We will continue to work closely with our network of Parliamentary Champions to ensure that the momentum generated by the Westminster Hall debate is not lost and that the publication of the Delivery Plan remains a firm priority for the Government.

We would like to offer our sincere thanks to all those who took the time and energy to contact their MP to request their attendance at the debate, and for sharing their personal experiences of ME, many of which were shared during the debate itself.

We would like to thank all those who attended the Westminster Hall debate, ensuring that the voices of people with ME are heard and not lost.

Finally, we would also like to personally thank Sir Sajid Javid MP once again for scheduling the debate and for his continued commitment to people with ME.