Write to your MP – Encourage them to attend the next APPG meeting – 10th December 2025

[Your Address]

[Your MPs Name
House of Commons
London
SW1A 0AA

[Date]

Dear [INSERT MP's NAME]

As a member of your constituency with/as a carer for somebody with ME/CFS/Long Covid *delete as appropriate, I would like ask you to attend an APPG meeting on the 10th December 2025 from 3.30pm – 4.30pm, in Room B, 1 Parliament Street. The meeting follows the recent Westminster Hall debate led by Tessa Munt MP and the Overlapping Illness Alliance drop-in.

Please may I ask you to raise as many of these important points as possible:

Around 400,000 people have ME/CFS in the UK. ME/CFS affects all age groups and ethnicities. For most people, ME/CFS is a long term and very debilitating condition with around 25% of people being severely or very severely affected – meaning they are largely or totally housebound or bedbound.

In addition, there are around 2 million people with Long Covid – many of whom have ME/CFS symptoms. Research indicates that around 50% of people with Long Covid could also meet diagnostic criteria for ME/CFS.

The economic cost to the country of ME/CFS (2017) has been estimated to be over £3 billion (https://2020health.org/wp-content/uploads/2020/11/Counting-the-Cost-CFS-ME.pdf) per annum. The cost of Long Covid was estimated at £10.5bn (2024) for 2 million people who are believed to be affected (https://link.springer.com/article/10.1007/s10198-023-01653-z). We are therefore dealing with a major public health crisis.

Government funding for biomedical research into ME/CFS is inadequate and is far below that given to many other long term debilitating conditions.

Education and training on ME/CFS for doctors and other health professionals is often inadequate, inaccurate or non existent – resulting in people receiving late or misdiagnosis followed by inadequate or even harmful advice on management.

Despite a new NICE guideline on ME/CFS, which recommends that everyone with ME/CFS should be referred by their GP to a multidisciplinary specialist service for diagnosis and management, no such service exists in many parts of the country. And where a service does exist it is unlikely to be providing the full diagnostic and management service that is recommended in the NICE guideline.

Specialist services for children and adolescents, and for people with severe or very severe ME/CFS, are either lacking or inadequate in most parts of the country. This is unacceptable and needs urgent attention to ensure patients are receiving the care they need from the NHS. There are known risks during hospital admissions and many of these issues were raised by the corner who issued a Prevention of Future Deaths report (Oct 2024: https://www.judiciary.uk/prevention-of-future-death-reports/maeve-boothby-oneill-prevention-of-future-deaths-report/). Healthcare provision is vital for these patients and needs to be urgently addressed.

People with ME/CFS (and Long Covid) often have great difficulty in obtaining sickness and disability benefits and may only succeed after going through a stressful appeal procedure.

For information, there is an All Party Parliamentary Group on ME* and one for Long Covid** which you can join to start helping thousands of people like me. To join the APPG’s, please contact MP Jo Platt who is the chair of both APPGs: jo.platt.mp@parliament.uk

Please let me know if you can help.

Yours sincerely,

[Insert name]

*https://appgme.co.uk
**https://members.parliament.uk/member/4673/appgofficerroles

Further information:

DHSC Delivery Plan on ME/CFS (July 2025): https://www.gov.uk/government/publications/mecfs-the-final-delivery-plan

The ME Association's statement on the delivery plan: https://meassociation.org.uk/2025/07/the-me-associations-statement-on-the-governments-delivery-plan-on-me-cfs/