• Help us to support others – donate now and change a life

    Donate now

Make a difference

  • A
  • A
  • A
Text size
M.E. in parliament

M.E. in parliament

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 work in parliament, which consists of engaging directly with parliamentarians, providing written evidence, and collaborating with other organisations. In doing so, we aim to facilitate more influence and create a better understanding of M.E. among policymakers. 


Action for M.E. frequently responds to government consultations in order to highlight how proposed policy changes would impact on people with M.E. Some of our recent responses have been submitted to:

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. 

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:

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.

Recently, the group published a joint statement on the draft of the 11th edition of the International Classification of Diseases (ICD-11), and continue to meet regularly with key decision-makers in the health and social care sectors.

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

All-Party Parliamentary Group (APPG) on M.E.

The APPG on M.E. aimed to improve the lives of people with M.E. by working collaboratively to stimulate greater understanding and awareness of the illness, and tackling key policy areas to improve outcomes for people affected by M.E.

In the 2015-2017 parliament, the APPG produced a resource for MPs, Supporting your constituent with M.E. The Group has also been collecting evidence and testimonies on access to social care for people with M.E.

Following discussion between elected officers, the joint Secretariat and M.E. charity partners, the decision was taken in August 2017 not to re-register the APPG at this time. 

As joint Secretariat, Action for M.E. and the ME Association supported the APPG Chair and other elected officers to take the group forward, working with them and APPG charity partners ME Research UK, 25% M.E. Group, Tymes Trust, ME Trust, Invest in M.E. Research, Blue Ribbon Awareness for M.E., and reMEmber.

Like all APPGs, the APPG on M.E. was disbanded when parliament dissolved for the General Election earlier this year. Going forward, we want to ensure we maximise opportunities to engage with parliamentarians by making the best use of the resources and capacity we have. Following consultation with elected APPG officers, and charity partners who attended the Forward M.E. meeting in July, both charities agree that, instead of re-registering the group and committing to being joint Secretariat, we can achieve better outcomes for more people affected by M.E. by engaging strategically with MPs, peers and decision-makers on an individual basis.

The Countess of Mar, former Co-Chair of the APPG, says, β€œIt is extremely challenging to ensure that MPs and peers reliably commit to attending APPG meetings. Despite the best efforts of the Secretariat and charity partners, there has simply not been the momentum needed to drive the changes we want to achieve.

β€œI believe we can exert more influence by inviting parliamentarians to attend Forward M.E. meetings, where we focus on specific and urgent issues such as the NICE guideline and provision of NHS services. In addition, I have asked to join the well-established APPG on Disability, and will strive to ensure that it considers the needs of people with M.E., including the severely affected, in its work.”