A key briefing to help parliamentarians understand the issues facing people affected by M.E. has been co-authored by #MEAction UK, the ME Association, Action for M.E., and the ME Trust. Read the Parliamentary briefing.
Our collaboration on this was prompted by a discussion with the UK team responsible for the impact campaign for the M.E. documentary, Unrest, as our four organisations are official supporters of the film. (The Unrest team reached out to every national charity in the hope of being as collaborative as possible. Ours were the four that chose to participate in “Time for Unrest”.) Our collaboration on this briefing was prompted by a discussion on how we might build on the awareness raised among parliamentarians following Forward ME and the Unrest team’s screening at Westminster last autumn, and the possibility of a Westminster debate came up. Unfortunately at this stage, funding for Unrest’s UK team ended, but #MEAction, the ME Association, Action for M.E. and the ME Trust decided to work together to continue taking this forward.
After liaising with our parliamentary contacts to begin the process of securing a debate, we agreed that it would be useful to produce a briefing, with the aim of helping parliamentarians to learn more about the issues facing people affected by M.E. It was written to appraise MPs of what we all believed to be the main headline issues facing people with ME and it was not designed to be exhaustive. Each of the four charities involved took responsibility for a number of topics included in this briefing, and we all had the opportunity to make any changes before circulating the briefing further.
It had been our intention to bring in more partners to comment on the draft at this stage. Unfortunately, co-ordinating the document between our four organisations took more time than originally planned, and so we had neither the time nor capacity for the broader consultation we would have hoped to conduct.
We are now faced with a potentially tight deadline (the scheduling of the debate will be decided by MPs imminently, and is out of our control). Asking for further edits at this stage would seriously limit the period in which we could effectively engage with parliamentarians to share the briefing, which is the most important outcome for this piece of work.
With time being a priority, we took the decision to invite organisations to endorse the briefing in its current and final iteration, giving notice of our intention to do this at the most recent Forward ME meeting, which many other ME charities are part of. Our hope is that this will demonstrate the M.E. community’s broad support for addressing the issues raised in the briefing.
The briefing will be shared online by each of our organisations as soon as it has been confirmed that the debate will take place, and we will be asking patients, carers and supporters to engage their own MPs in the run up to the debate using the briefing.
This is just one of many steps. We hope, wherever possible, to continue to collaborate with a broad group of charities on these efforts.
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3 thoughts on “Learn More About the UK Parliamentary Briefing”
Please contaft Invest in ME and invite as a matter of urgency.
What about MERUK who are doig some great science.
This is good news – see also Gibson Report on ME where ithis was first raised in Parliament.
Thanks for the explanation and clarity. It’s good to have transparency on how these things come about. I’m very surprised that MEAction is working with Action for ME when your own me.pedia is critical of their support for the PACE trial and funding of biopsychosocial research into ME.
Alison, #MEAction remains firmly opposed to any biopsychosocial approach to ME that undermines the demonstrated organic basis of this disease. Our organization started with campaigning against the PACE trial in 2015 and our fight against it has continued on many fronts. While we don’t agree with the actions of any organization 100% of the time, we also want to continue to invite others to collaborate on a positive advocacy agenda for health equality for ME wherever possible. The Time For Unrest campaign invited every national charity in the UK to participate. The ME Association, Action for M.E., and the ME Trust were the organizations that chose to participate along with #MEAction.
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