Campaigning for change

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Action for M.E. is an active member of Forward-ME, a group founded by Countess of Mar, who recently stepped down as chair but is still heavily involved in the group. Andrew Morris has stepped into the role as Chair and, with his vast experience in coaching and mentoring in growing organisations, aims to lead with a clear vision and core purpose.

Our CEO Sonya Chowdhury is the Head of Support and Care for Forward M.E. and is a member of the core Steering Group.

Forward-ME was established to provide a unified and louder voice for the ME community, in particular to reach key influences and stakeholders – such as by supporting the APPG for ME. The main objective of the group is to ensure that the needs of people with ME/CFS are better met by facilitating unity across the ME field.

The group is also a member of the International Alliance for M.E.

NICE guideline for M.E.

Forward-ME has been successful in many areas. One key example of this is their coordinated response to NICE's draft guideline on M.E., and subsequent delays to the the revised guideline, which was published in October 2021. You can read Forward-ME's response to the delays on the NICE guideline and all meeting minutes on its website.

In 2019, Forward M.E. surveyed 2,274 people about their experience of graded exercise therapy (GET) and cognitive behavioural therapy (CBT), and we have shared this data with the NICE Guideline Development Group.

Key events and activities

Forward-ME has published an open letter addressing concerns and highlighting best practice with regards to rehabilitation of people with long Covid who are experiencing post-viral fatigue. An Early Day Motion for debate was also tabled on this.

In September 2020, in response to a topic that has become of interest to some in the patient community, Forward-ME released a joint statement on spinal surgery and M.E.

In 2019 and 2018, we co-hosted exhibition stands and workshops at the Royal College of General Practitioners (RCGP) conference, engaging with delegates to share best practice information about the diagnosis and management of M.E.