Next Thursday, Parliament will hold a 3-hour Westminster Hall debate on Myalgic Encephalomyelitis treatment and research in a monumental victory for the ME community.
In preparation for the debate, #MEAction UK volunteers prepared a parliamentary briefing along with three other charities – ME Association, Action for M.E., and the ME Trust. (Learn more about how the charities came together to work on the briefing.) While overall the briefing was strong, it contained some language that was inconsistent with what we stand for as an organisation and have always fought for as a community. We are sorry for the distress this has caused.
Over the last week, we’ve worked hard to incorporate the key feedback we’ve received from our volunteers, #MillionsMissing organisers and the community at large to ensure that there is no ambiguity regarding the urgent need to remove Graded Exercise Therapy and Cognitive Behavioural Therapy from the NICE Guidelines. We are grateful to all the charities who have supported this document for their responsiveness and feedback.
The briefing was meant to be a high level summary of the core issues people with ME face accessing appropriate medical care, social care and benefits. We urge individuals to contact their MPs to share their personal stories to underline the evidence put forth in this briefing – such as harm caused from following the psychosocial model of CBT/GET – or to draw attention to issues the briefing was not able to include. We also encourage other ME charities to submit their own briefings since it is not uncommon for MPs to receive multiple briefing documents for a debate.
[maxbutton id=”7″ url=”https://meaction.net/2018/06/08/westminster-hall-debate/” text=”Contact your MP” ]
[maxbutton id=”11″ url=”http://meaction.net/wp-content/uploads/2015/05/ME_Briefing_21_June_2018.pdf” text=” text=”Read the amended parliamentary briefing” ]
The parliamentary briefing deserved, and would have benefited from, a more robust process and greater staff support. Unfortunately, the limits of volunteer and staff capacity combined with a shifting external deadline meant that the process was rushed and the briefing was not reviewed as comprehensively as needed. We are going to be announcing in the coming weeks some changes to strengthen our internal processes. (And we believe all of these efforts will be greatly helped once we have a full-time, on-the-ground UK coordinator to provide support and project management for our #MEAction UK team of volunteers. Learn more about our UK fundraising campaign.)
We want to thank the ME community for bringing these issues to our attention. Your feedback and participation push us to do better, and we will continue to try our best to create an ethos of constructive criticism, transparency and engagement.
The NIH ME/CFS Research Roadmap public comment period is open now with a deadline of March 8th. #MEAction is a member of the ME/CFS Research Roadmap Working Group and for the past several months we have been advocating on behalf of this community within this group. Our Executive Director, Laurie Jones, served on the nervous