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.
Earlier in 2021, concerns were raised by people with ME about the REGAIN clinical trial and whether there was a risk to people suffering from post-viral symptoms, particularly post-exertional malaise. The REGAIN study aims to find out which of two treatments is better for helping people recover after being in hospital with Covid 19 –