Graphic showing the Houses of Parliament and Big Ben with logos for Action for ME, Long Covid Support, and the ME Association. Text reads :First joint ME and Long Covid APPG meeting minutes are now available! Logos for the APPG on Myalgic Encephalomyelitis and APPG on Long Covid appear at the bottom.

First joint ME and Long Covid APPG meeting minutes are now available!

The official minutes from the first joint ME and Long Covid APPG meeting are now available.

Stephen Timms, Minister for Social Security and Disability, joined the first part of meeting which focused on the Government's proposed welfare reforms.
Attendees raised serious concerns regarding the impact the proposed reforms, citing evidence from the recent survey, developed by Long Covid Support, Action for ME, ThereforME, and ME Local Network.

Jo Platt MP, Chair of both APPG's also referenced her own lived experience when outlining these concerns. Following a request from Jo, the Minister asked for a formal request to meet with her and the Secretariat, alongside including them in the Stakeholder Group he is convening to help redesign PIP, to be put in writing.

We collectively look forward to the opportunity to engage with the Minister further on these issues.

Attendees also saw presentations from:

  • • Prof David Strain – similarities and differences between ME and long Covid
  • • Prof Chris Ponting – where are we now? ME research & DecodeME
  • • Prof Danny Altmann – where are we now? Long Covid research
  • • Dr Binita Kane – a strategic approach to funding research into ME, Long Covid and associated post-infectious illnesses

The final 3 presentations are available to watch through links in the formal minutes.

Among a number of conclusions, including Jo highlighting the lack of NHS support for severely affected patients, members agreed to write to Ministers Dalton and Vallance to outline the groups concerns and proposed solutions.

Thank you to those who attended the meeting, and we will share an update soon regarding future meetings.

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