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Invite your MP to join the next APPG on M.E. meeting

October 30, 2023

The next meeting of the All-Party Parliamentary Group (APPG) on M.E. will take place on Wednesday 15 November at 1.30pm-4.30pm.

The upcoming meeting will be centred around research, with Prof Chris Ponting from the University of Edinburgh in attendance to provide updates on the DecodeME Study and the ME Genetics Centre of Excellence. These initiatives are both being co-led by Action for M.E. and people with lived experience.

Unfortunately, the meeting will not be live-streamed. We understand this will be disappointing to many, but after exploring various options available to us, we have encountered technical challenges. Parliamentary regulations stipulate that the recording of official parliamentary proceedings must be carried out using equipment provided by Parliament, and not many meeting rooms are equipped for this purpose so being able to book one of these rooms is difficult given they are in high demand. In a previous meeting, we experienced significant difficulties when attempting to facilitate the remote participation of an external presenter due to limitations with the available equipment, causing frustration for all involved.

However, our Chair, Carol Monaghan MP, has kindly agreed to provide a verbal update immediately after each meeting, and this update will be shared online by the Secretariat.

Meeting minutes are always shared on the official APPG on ME website. The draft minutes from the previous APPG meeting held on 14 June 2023 will be approved by members at the upcoming meeting.


Contact your MP

We would be very grateful if you could encourage your MP to attend. The more MPs at these meetings the better the chance of raising awareness of key issues and lobbying for positive change. You might:

  • share social media announcements.
  • personalise and send the email below.

You can locate your MPs contact details on the UK Parliament website.


Template Letter

Dear [YOUR MPS NAME]

The All-Party Parliamentary Group on M.E. (Myalgic Encephalomyelitis)

I am writing to invite you to the next meeting of the APPG on M.E. which will take place on Wednesday 15 November at 1.30pm-2.30pm. As one of your constituents, I am hoping you can attend on my behalf.

M.E. affects more than 250,000 people in the UK, which means around 400 young people and adults in your constituency. It is indiscriminate and can dramatically impact the lives of people from all ethnicities and socio-economic backgrounds.

M.E. is recognised as a long-term, fluctuating, neurological condition. It affects the body in different ways and leads to functional limitations that mean people are unable to initiate or complete normal activities. It most often develops after an infection and most people are unable to fully recover.

The physical symptoms of M.E. can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, and congestive heart failure. People with M.E. experience a lower quality of life than most other long-term conditions.

Long COVID is another post-infectious syndrome that has clinical and pathological overlaps with M.E. As many as 1 million people could have a diagnosis of long COVID and research is suggesting up to 50 per cent of those with this condition could meet the diagnostic criteria for M.E.

[Include some additional information that reflects your personal experience as someone with M.E. living in this constituency]

Ahead of the next general election, Action for M.E. has developed a manifesto on M.E. with three key calls. I stress the importance of these calls being adopted by Government as a means to demonstrate support for the M.E. community and prevent what, in many cases, is a lifetime of pain and isolation. The manifesto calls for:

  • The full implementation of the interim delivery plan on ME/CFS
  • Appropriate and consistent coding of M.E. by GPs
  • Properly funded research into M.E.

Progress has been made in recent years on some of the calls, but much greater action is needed. I would therefore value your support as my MP by raising some of these issues at the APPG meeting.

More information

  • The APPG on M.E. is chaired by Carol Monaghan MP, and you can contact her office to obtain further details about the next meeting: carol.monaghan.mp@parliament.uk.
  • You might like to download a copy of the APPG on M.E.’s 2022 report: Rethinking M.E. This report contributed to the decision by the Department of Health and Social Care (DHSC) working on a Delivery Plan to prioritise health, social care, and research in M.E. The interim delivery plan on ME/CFS has now been published and can be accessed here.
  • Action for M.E. has also recently published an FOI report on the implementation of the 2021 NICE Guideline on ME/CFS: Patchy, Misunderstood and Overlooked.
  • The 2021 NICE Guideline on ME/CFS contains evidence-based recommendations to the NHS and social care services. It is the result of 3 years work and is endorsed by Action for M.E. and The ME Association. Both charities are working with the DHSC, NHS, and social care services to see the Guideline implemented across the UK and improved and new healthcare services commissioned.

Kind regards

[ADD YOUR NAME and POSTAL ADDRESS]

 

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