Portcullis House, 1.00-2.00pm, 2 September 2026
Extraordinary General Meeting (EGM)
In attendance:
Christine Jardine MP (Chair)
Dan Aldridge MP, Jonathan Brash MP, Monica Harding MP, Navendu Mishra MP, Tom Morrison MP, Tessa Munt MP, Baroness Scott, Alistair Carmichael MP.
The meeting was opened with a formal statement regarding the responsibilities of the APPG Chair and Officers to ensure compliance with rules and due diligence.
- Tessa Munt MP was confirmed as the Chair, with Tom Morrison MP appointed as Vice Chair.
- Debbie Abrahams MP and Bradley Thomas MP were reconfirmed as the remaining officers.
- The group formally approved the income and expenditure statement, the annual report, and the due diligence statement.
After the EGM, the APPG met to review preliminary findings from Action for ME’s Big Survey 2026 and discuss strategies for parliamentary advocacy.
APPG meeting on Action for ME’s Big Survey 2026
In attendance:
Speakers:
Sonya Chowdhury – Action for ME
Dr Katharine Cheston – University of Durham
Parliamentarians:
Tessa Munt MP (Chair), Amanda Hack MP, Jayne Kirkham MP, Llinos Medi MP, Tom Morrison MP, Baroness Scott, Lord Strasburger (APPG on Long Covid)
Staff representatives of:
Chris Coghlan MP, Baroness Finlay, Tom Morrison MP, Tessa Munt MP, Jo Platt MP
Minutes
Survey Findings
Sonya and Katharine presented headline findings from the Big Survey 2026.
APPG members received a confidential overview of some of the key findings from the Big Survey ahead of its official launch in early November. The findings will inform actions that members will take over the coming months given planned parliamentary activity and party conference participation.
(The full findings remain confidential to a briefing for APPG members and are not reproduced here.)
Parliamentary action
Tessa Munt and other members discussed methods to utilise this data in parliament with the following actions:
- Action for ME will prepare and circulate a confidential summary for all APPG members.
- Tessa Munt proposed a campaign called “CodeME” to encourage patients to ensure their ME status is correctly recorded in GP systems.
- The need for better data was emphasised, noting that a lack of coding and inconsistencies with coding prevent accurate estimates of the ME population across ICBs and nationally. Action for ME previously prepared work on this and agreed to share this to inform action that might be taken.
- There was a consensus that the group must emphasise the “economic costs’ — highlighting the cost of having large numbers of people out of the active workforce — to gain government attention.
- The group agreed to write to James Frith MP, the new minister with responsibility for ME, to highlight the survey, share and raise concerns about findings, and encourage him to request information from the survey data. It was also noted that there had not been a one-year update on the Final Delivery Plan which was published in late July 2025.
- A discussion was held regarding identifying specific health trusts that provide good care for either mild/moderate or severe ME to develop models demonstrating good practice.
- Members agreed to coordinate parliamentary questions and confidential briefing to influence policy during party conference season.
Unresolved Questions
The meeting concluded with several outstanding queries regarding data availability and government accountability:
- Can the survey data be further segmented geographically or by specific regions (e.g., Wales) once analysis is complete?
- Why has there been no One Year Update on the government’s Final Delivery Plan of July 2025?
- How can the gap between official DHSC and independent estimates of ME prevalence be effectively addressed?