#MEAction UK are sad to announce that we are no longer part of Forward-ME.
#MEAction UK worked hard on and fully supported the Forward-ME statement on spinal surgery and ME. Some Forward-ME members felt that #MEAction co-founder Jennifer Brea’s personal interest in and advocacy for people with mast cell activation syndrome, connective tissue disorders and structural and/or neurological diagnoses conflicted with their aims. Despite co-producing this statement, our name and logo has been removed from the statement by Forward-ME. #MEAction UK disagrees with this decision and stands by the joint statement that we helped prepare.
Additionally, our membership of Forward-ME has been revoked. We have to accept that decisions on membership of Forward-ME lie solely with the Countess of Mar, who informed us last week that she had withdrawn #MEAction UK’s membership of the group. We are proud of the work that we have contributed to as members, including the survey on CBT and GET for NICE, providing volunteers for the Royal College of GPs’ conference information stall and working with the community to make the ME parliamentary debates as successful as they were. We encouraged the ME community to invite their MPs to attend the APPG and will continue to lend our support to any initiative that helps people with ME.
We will continue to work with individual members as we approach one of the most important events for the ME community in well over a decade: the NICE draft guidelines consultation.
#MEAction UK is first and foremost a grassroots organisation led by volunteers with ME, carers, and other allies. We are proud of the work we do to publicly give voice to people with ME across the UK, and promise that this will continue. Together we can make change happen.
We believe that each ME charity and patient organisation in the UK plays a vital role in working towards common goals. We will continue to collaborate where we can be more effective together.
As people with ME and carers volunteering with #MEAction UK, this is not a job for us, but a fight for our own futures and that of our loved ones.
If you want to be part of that fight and help steer #MEAction UK, please consider volunteering with us. Our aims over the coming months include submitting a robust response to NICE as part of their draft guideline consultation; continuing to reach out to the media to highlight the link between long-COVID and ME; and becoming a UK charity in our own right.
20th October 2020