The Time for Unrest event at the Scottish Parliament on 30th January was an opportunity to raise awareness of Myalgic Encephalomyelitis (ME) among Members of the Scottish Parliament (MSPs), and ask them to take action to support the 21,000 people with ME in Scotland. Attended by over 70 people, it attracted an unprecedented number of MSPs and was described as “one of the most popular events I have seen” by the event manager at the Scottish Parliament.
The evening reception brought MSPs together to meet people with ME, charity representatives, and key ME advocates from across Scotland. Hosted by Ben Macpherson, MSP, the event highlighted the need for better understanding of ME amongst health professionals, fair access to welfare benefits, and properly funded collaborative research.
The event was so well attended it was standing room only. Photo by Anneleen Lindsay
Jennifer Brea, director of the documentary Unrest, joined the evening via Skype, introduced a clip from the film and joined the discussion following it. Her opening words were incredibly profound and cut to the heart of the issue: “The debate over whether this illness is physiological is over. But despite this – and this is true in Scotland, it’s true across the UK, it’s true all around the world – we’ve done almost nothing to invest in the research and care of this patient population due to the stigma, the misperceptions and the invisibility of the disease.”
A 20-minute excerpt from the film was shown, powerfully illustrating the severely debilitating nature of ME and the issues that sufferers face. The author Nasim Marie Jafry, parent Lorraine Butter and Edinburgh University’s Professor Chris Ponting were some of the speakers who emphasised the urgent need for better understanding among medical professionals, better provision of care for patients, and the dire lack of properly funded collaborative research. Powerful stories were told during the discussion and MSP’s heard first-hand examples of the injustices and neglect suffered by so many present. This was contrasted with anticipation and hope; a feeling among attendees that such a gathering could make a difference. As Gillian Grant of the Glasgow ME support group said, “Unrest is creating a feeling that change is finally coming and the buzz in the room that evening certainly matched that”.
MSP John Mason meets Emma Shorter, a prominent Scottish ME activist. Photo by Anneleen Lindsay
The aim of the event was simple: raising awareness of ME and getting MSPs to take action in two ways – asking their local Health Board to fund a specialist nurse for people with ME, and asking NHS Education for Scotland about the education and training it currently delivers on ME. Follow-up activities include a petition to Parliament calling for funding for research and education for healthcare professionals, as well as continuing the campaign for specialist support in Scotland.
The widespread media interest in the event ensured even further awareness raising around the UK. There was excellent coverage of the event in Scotland, with articles in both major Scottish national newspapers and in many local papers. Coverage elsewhere in the UK included articles in the Daily Mail and various local papers
Background to the Event
The Parliamentary event was organised by Janet Sylvester and Kim Gurav, with a group of a dozen volunteers affiliated with #MEAction. It was hosted by Ben Macpherson, MSP for Edinburgh Northern and Leith, who got involved after attending last year’s #MillionsMissing protest at the Scottish Parliament.
Also at the event were representatives from six regional support groups from across Scotland: Aberdeen, the Borders, Cumbernauld, Dumfries and Galloway, Fife and Glasgow. The three major ME charities in Scotland all attended: the ME Association, Action for ME and ME Research UK. There were 15 MSPs present with cross-party representation: this was an unusually high turn-out for a volunteer organised and funded event. The high attendance of MSPs was – as a number of them commented – as a result of receiving dozens of emails from constituents urging them to go along.
Some of the MSPs who attended. Photo by Anneleen Lindsay
What happened at the event?
The event opened with a short Skype introduction from Jennifer Brea, director of Unrest, and was followed by a 20-minute clip from the film which included footage of Jen’s own struggles as well as some of Jessica Bearman Taylor’s story; a young woman from the UK.
Nasim Marie Jafry was then introduced and she discussed the political reframing of the illness from ME (treated as a neurological illness) to CFS (treated as a psychosomatic condition), and the difference between her treatment in the 80’s and early 90’s. She spoke of how it appears that medical treatment has gone backwards for this disease.
The issues with Graded Exercise Therapy (GET) were highlighted by Lorraine Butter, who has ME and is a mother of three children with ME.She described how forced GET had harmed one son in particular. This was a shocking story and her anguish could be felt throughout the room. Professor Chris Ponting from Edinburgh University then spoke of the need for significant investment in joined-up, multi-disciplinary research if there were to be any possibility of making good progress.
During the Q&A session the stories of injustice and neglect came out again and again. Louise McAllan from Stirling commented, “It was moving to be there as patients’ and carers’ voices were heard for the first time, and to feel heard myself for the first time. Those in the room unfamiliar with the disease were visibly struck by the level of suffering experienced by patients.”
It was particularly powerful having a number of people present share their own experiences as it brought the difficulties patients face back to Scotland, impressing that change is needed here. An underlying theme of patient’s experiences was the complete lack of care and poor treatment many had received. One patient spoke about how he had been refused benefits unless he took part in a programme of CBT/GET. His experience left many in the room shocked and several in tears, including Jen on Skype, impressing on MSPs the seriousness of the situation. In response to further questions the panel spoke of the need for education of healthcare professionals in order for them to better understand ME, and stressed the urgent need for more specialist nursing services like that in Fife – the only such service in Scotland.
The seriousness of the situation clearly hit home to the MSPs present from the discussions and comments they made afterwards. Fulton MacGregor, MSP, tweeted later about the very moving contributions of speakers and of “a strong take home message for the MSPs there!”
During a conversation at the event, John Mason, MSP, showed concern and sympathy for people with ME applying for benefits and the huge stress this put them under. He spoke of looking into the process and finding out more about his constituents with ME.
On Twitter Claire Baker, MSP, described the evening as an important meeting “highlighting what it is like to live with ME and campaigning for more understanding and research”. These reactions show that when people are presented with the shocking facts and the lived experience of people with ME, they realise that action needs to be taken. The challenge is making more people fully aware of this, and ensuring action is actually taken.
The follow-up activities will be:
- A campaign to encourage people to email their MSPs, especially those who did not attend asking them to contact their local Health Board and NHS Education Scotland.
- Sending a ‘Guide to ME in Scotland,’ a briefing paper prepared by Emma Shorter, to all MSPs.
- Continuing to work on more media coverage in Scotland for the campaign.
- Launching a Scottish petition.
An additional outcome of the event was bringing together people from across Scotland who are active in working for change for people with ME. It was the first time a group like this has gathered in Scotland, and it increased awareness for everyone of the breadth and number of people involved. The publicised request to email MSPs also galvanised the ME community in considerable numbers, making them especially aware of their strong contribution in lobbying for change.
The event organisers want to thank all the volunteers who helped make the evening such a success – a huger number of people across Scotland got involved with the campaign by emailing their MSPs, sharing on social media, writing press releases and contacting their local newspapers.
Volunteers Janet Sylvester and Kim Gurav, the main organisers of the event said:
“A huge thanks to all the volunteers who helped make the Parliamentary event such a success. The event succeeded in raising awareness of MSPs of the huge impact that ME has in Scotland and we hope that we can capitalise on this success and make sure that the momentum is not lost.”
The volunteers who made it happen (those well enough to attend). Photo by Anneleen Lindsay
MSPs who attended
|Claire Baker||Member for Mid Scotland and Fife||Labour|
|Claudia Beamish||Member for South Scotland||Labour|
|Alexander Burnett||Member for Aberdeenshire West||Conservative|
|Kate Forbes||Member for Skye, Lochaber and Badenoch||SNP|
|Emma Harper||Member for South Scotland||SNP|
|Alison Johnstone||Member for Lothian||Green Party|
|Gordon Lindhurst||Member for Lothian||Conservative|
|Lewis MacDonald||Member for North East Scotland||Labour|
|Fulton Macgregor||Member for Coatbridge and Chryston||SNP|
|Ben Macpherson||Member for Edinburgh Northern and Leith||SNP|
|Gillian Martin||Member for Aberdeenshire East||SNP|
|John Mason||Member for Glasgow Shettleston||SNP|
|Joan McApline||Member for South Scotland||SNP|
|Colin Smyth||Member for South Scotland||Labour|
|Annie Wells||Member for Glasgow||Conservative|