What did the Unrest parliamentary event achieve?

Tuesday 24th October, 2017 will long be remembered as a significant day for anyone involved in ME politics.

Background

Despite knowing the issues facing people with Myalgic Encephalomyelitis (ME) should concern MP’s from across the political divide, it has been hard work to engage them to our cause. The APPG (All Party Parliamentary Group) for ME was disbanded in June this year and we needed new ways to recruit much needed support for the ME community.

When the ME Association secured the Speaker’s State Rooms for a special parliamentary screening of the film, Unrest, it had the potential to be a game changer.

The timing of the event couldn’t have been better. When NICE declared that it was proposing NOT to update their guideline for ME (CG53) last summer, it provided the whole community with an excellent campaigning opportunity.

#MEAction orchestrated a campaign to demonstrate how NICE guidelines had let individuals down. Stephen Timms, MP tabled an Early Day Motion (271) calling on NICE to recognise patient experience and international biomedical evidence in a full review.

Patients and carers contacted their MP’s urging them to sign EDM 271, sharing a parliamentary briefing and crucially also sharing their own experiences of living with ME and recommending they attend the Unrest reception.

The film, Unrest, powerfully demonstrates the invisible nature of ME and when it was screened, the story that Jen and Jessica courageously revealed helped to flesh out the many letters that MP’s received from their constituents.

(Stephen Timms MP with Sarah Reed from #MEAction )

Attendance

MP’s were invited to attend the reception and constituents were urging them to attend. 53 accepted the invitation. Anyone who has worked in Parliament will acknowledge that this is a great response! The nature of Parliament always results in a lower turnout on the day and aproximately 40 popped in at some point throughout the event. Those recorded as attending were:

Adrian Bailey MP Labour Peter Bottomley MP Conservative Alex Burghart MP Conservative Vince Cable MP Lib Dem Alex Chalk MP Conservative Joanna Cherry MP SNP Christopher Chope MP Conservative Geoffrey Cox MP Conservative Jim Cunningham MP Labour Ed Davey MP Lib Dem Glyn Davis MP Conservative David Drew MP Labour Chris Evans MP Labour Michelle Gildernew MP Sinn Fein Patrick Grady MP SNP Andrew Gwynne MP Labour Lady Sylvia Hermon MP Independent Tony Lloyd MP Labour Margaret Mar Countess Cross bench Paul Maskey MP Sinn Fein Kerry McCarthy MP Labour Carol Monaghan MP SNP Nicky Morgan MP Conservative Sarah Newton MP Conservative Jeremy Quinn MP Conservative Chris Ruane MP Labour Jim Shannon MP DUP Paula Sheriff MP Labour David Simpson MP DUP Alex Sobel MP Labour Mark Tami MP Labour Debbonaire Thangam MP Labour Derek Thomas MP Conservative Stephen Timms MP Labour Liz Twist MP Labour

However, this was more than a numbers exercise. It was about getting the right people to attend who could continue to champion our cause. In talking to MP’s afterwards who couldn’t make the event, many reported that constituents had contacted them about ME and it was encouraging that our message was being received far and wide.

The event

The Speaker’s State Rooms provided a perfect setting for an event of this importance. The adjoining room houses the grand state bed which would have made for a fitting backdrop to Unrest but it’s reserved for Monarchs the night before their Coronation!

The Countess of Mar opened proceedings with an insightful speech on the economic cost of ME/cfs to the UK, Dr Charles Shepherd (Medical advisor to the ME Association) followed with a fantastic talk about the history of ME as a disease, how it lost its way and the steps needed for better treatment. These gave the perfect backdrop for the Unrest exert that was shown. The film is deeply moving, all the more so knowing it is also representative of all the people who had written to their MP trying to explain what ME is like and the difficulties they face. It was hardly surprising that the Q&A session that followed was emotionally charged particularly from Jen Brea and Jessica Taylor-Bearman.

Afterwards, Parliamentarians, prominent researchers and ME charity representatives continued discussions and questions and it was clear that our message had hit home.

Success

There can be no doubt that the Unrest event was a huge success and we are in a much stronger position for future campaigning. Huge thanks must go to the ME Association, Dr Charles Shepherd, the Speaker John Bercow MP, the Countess of Mar, the whole Unrest team, particularly Lucy Wilson who has helped to co-ordinate the ME organisations, invitations and publicity, and of Course Jen and Jessica for their extraordinary effort and achievement.

Huge thanks must also go to all individuals who have engaged with their MP to make them aware of how deep and widespread our problems are.

Next steps

There are more ME charities and organisations than you can shake a stick at. We all have our own strengths but our real strength is when we all work together.

From the involvement of constituents, the screening, and EDM 271 we now have a database of around 200 Parliamentarians who have expressed varying degrees of interest in ME. Many of these include high profile names such as Vince Cable, Diane Abbott, Nicky Morgan, Frank Field and Caroline Lucas.

Unrest has given us unprecedented coverage of the many problems we face and people in politics, science and the arts are now challenging the narrative on the illness. It could take up to three years for NICE to update their guideline for ME so we need to keep ME on the political radar. We are currently following up interest in a parliamentary debate to bring the strength of support to a Ministerial level and to build on the renewed interest we have generated.

If you have already have liaison with your MP, do keep them up to date with proceedings. Each of us can play a vital role in the change we so desperately need. UK #MEAction members will soon be receiving an email inviting them to ask their MP if they would like to receive a screener of the film, so keep your eyes peeled!

Thanks to everyone who has organised, campaigned, shared and promoted Unrest and any activity that has highlighted the need for better research, care and treatment for people with ME. Jen Brea spoke for many when she said [when you’re ill with ME]“ you feel like you disappear but no one is looking for you.” Unrest has helped gather more people to start looking for us and to become fully visible again.

NB: EDM 271 will remain open for further MP’s to sign for the full parliamentary term so it’s not too late to ask your MP to sign. The full wording of the EDM and an up to date list of MP’s who have signed can be found here.

Further details about Unrest can be found here. It is also now available on iTunes, Amazon and other digital platforms.