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All Party Parliamentary Group on M.E. update

August 22, 2017

Following discussion between elected officers, the joint Secretariat, and M.E. charity partners, the All Party Parliamentary Group on M.E. (APPG) will not be re-registered at this time. The reasons for this are set out below, along with how we plan to continue moving M.E. up the political agenda.

One of hundreds of informal cross-party groups in the UK parliament, the APPG on M.E. was established 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.

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, “It 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.

“I 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.”

The next meeting of the APPG on Disability takes place on Wednesday 6 September.

Forward M.E. meetings will be held on Tuesday 17 October, with a speaker from the Royal College of Paediatricians; and Tuesday 31 October, with the Chief Executive of St George’s University Hospitals NHS Foundation Trust.

Action for M.E. will continue to raise awareness of M.E. among parliamentarians across the UK by:

  • proactively sharing key information with them about the illness and its impact, such as the findings from our Spotlight on specialist services report and survey of families facing false accusations
  • supporting them to take action to highlight key issues facing people with M.E., eg. by asking parliamentary questions, or attending meetings of the APPG on Disability
  • inviting them to work with us to ensure that the Government meets the needs of people with M.E.
  • supporting people affected by M.E. to engage with MPs and decision-makers; resources include our campaign toolkit
  • working with local M.E. support groups to enhance influence and increase understanding at a local level, including among their MPs.