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M.E. in parliament

Engaging with parliament and policymakers

Action for M.E. works to inspire action in order to end the ignorance, injustice and neglect experienced by people with M.E. One element of this is our engagement with parliamentarians and policymakers, providing written evidence, collaborating with other organisations, and supporting parliamentarians to raise issues important to people with M.E. In doing so, we aim to facilitate more influence and create a better understanding of M.E. among policy-makers. 

As well as our work in the UK, we are also engaging with the World Health Organisation and M.E. organisations globally to advocate for M.E. at an international level.


Evidence and consultations

Action for M.E. frequently provides evidence to government to highlight how proposed policy changes would impact on people with M.E. Some of our recent submissions include:

When responding to consultations we draw on a range of evidence from our previous reports, professionals, and people with M.E. and their carers. We often call for evidence through surveys or case studies, which can be instrumental in forming our responses.

Keep an eye on our news page for current opportunities to contribute evidence and feed into our responses. 


Forward M.E.

Action for M.E. is a member of Forward M.E., a House of Lords-led group convened by the Countess of Mar with the aim of promoting effective joint working to maximise impact on behalf of people with M.E. in the UK. The group meets regularly with key decision-makers in the health and social care sectors. 

The group's work includes:

  • contributing to the ongoing review of the NICE guidelines on M.E., through meeting with members of the review team and responding to consultations on this topic. 
  • engaging with wider groups in parliament to raise the profile of M.E., including the All-Party Parliamentary Group on Disability.
  • publishing joint statements on matters relevant to M.E., such as on a draft of the 11th edition of the International Classification of Diseases.

Minutes of meetings and further details about the group can be found on the Forward M.E. website


Update of the NICE guideline on M.E. 

In September 2017, the National Institute for Health and Care Excellence (NICE) announced that it had decided to review and update the NICE guideline Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management in full. Action for M.E. submitted both individual and joint responses to NICE outlining the need for such a review.

The process for updating the guideline is expected to take 2 years, with the new guideline’s publication scheduled for October 2020.

As well as our joint work with Forward M.E. on the guideline, Action for M.E. engages with the NICE review process by attending meetings and workshops held by the review team, and continuing to outline how the review team must focus on the voice of patients, and that the guideline itself must enable each patient to access the treatments that are right for them.

For information, visit our page on the NICE guideline review.


Parliamentary questions

We engage with parliamentarians throughout the UK, and support them to raise the profile of M.E. in Westminster, Holyrood, Stormont and the Senedd. As a result, a number of questions have been asked that highlight how ongoing government work impacts people affected by M.E.

Some recent questions have been asked by:

If you are interested in engaging with your MP to let them know more about M.E., how it affects you, and ask them to take action on your behalf, do not hesitate to get in touch for any information or support on the most effective ways to do this. 


Parliamentary debates

A Westminster Hall debate about the PACE trial and its impact on people with M.E. was held on 20 February 2018.

Carol Monaghan MP led the debate, raising concerns around the methodology and conduct of the trial, and its clinical value. Ms Monaghan also spoke about the potential conflict of interests around PACE, which was in part funded by the Department for Work and Pensions (DWP). The full transcript of the debate is available on Hansard, and Action for M.E. published a summary

A further debate on M.E. research and treatment took place on 21 June 2018. It was secured by a cross-party group of MPs and again led by Ms Monaghan. You can read the full transcript on Hansard, or read our short summary


Unrest

Unrest is Jennifer Brea’s film documenting her experience of M.E. The film has been screened internationally, including the Houses of Parliament and the Scottish Parliament in the UK, attended by MPs and MSPs respectively.

Action for M.E. is a charity partner of the film, and is supporting its engagement by promoting events and further highlighting the experiences of people with M.E. to parliamentarians and policymakers.