At the Scottish Liberal Democrats conference this Saturday in Dunfermline, party member Emma Walker will present a motion about Myalgic Encephalomyelitis (ME), focussing on the need for biomedical research and the removal of Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) as treatments for ME in Scotland.
If it passes, it will become Liberal Democrat party policy. You may have read this good news on social media, but how this came to happen may surprise you. This Liberal Democrat motion got its start at the school gates!
When we think of advocacy, we may think of large events like the #MillionsMissing actions, placards, petitions and parliamentary events. However, this is not the whole picture, and the story of how this motion came about demonstrates how small actions can have a huge impact, and how a simple conversation can turn out to be a game changer.
Emma Walker describes how she heard about ME, and why she felt it was an issue worth supporting.
“I was at my son’s primary school, when I bumped into another mum who I knew from when our kids were at playgroup together. We’d not seen each other in a long time, and when I asked her how she was, she told me that she had ME.
We had a long chat about it and I was shocked at the complete lack of support there is. My Dad has Multiple Sclerosis and I have been disappointed at the minimal support he has received, but in comparison to what I was learning about ME, I realised that my Dad was getting so much more.
I asked her if there was anything that I could do – I think at this point I was meaning things like picking her kids up for her – and she told me that anything that I could do to get the word out about ME and the current situation in Scotland where support is almost non-existent would be appreciated.
I’d joined the Scottish Liberal Democrat’s a few months before, and as I’m enthusiastic about helping people who are silenced to have their say, I thought that the urgent need for investment into the condition would make a strong conference motion.
I met with my playgroup pal for a coffee and she told me more about how she struggles to get through the day. She asked me to contact Emma Shorter for more info, and pointed me in the right direction of where to find further info.
The more I read, the more the weight of negligence became apparent to me.
I wrote the motion. To submit a motion to Lib Dem conference you need 25 people to put their name to it, or you can ask your local party to support it as a branch motion. West Edinburgh Liberal Democrat’s were wholeheartedly behind it – in fact Christine Jardine MP and Alex Cole-Hamilton MSP were already aware of the work of #MEAction – and it was submitted to conference before being approved by the conference committee.
I’m now preparing an eight minute speech to open the debate, and Alex Cole-Hamilton MSP is summating it. If conference votes for it, it will become party policy.
As a new member to the party, this is my first motion. I decided to submit it because it is difficult to comprehend the full impact of the nonchalance towards ME at every level. The severity of the condition plus the lack of understanding from the medical profession is a burden that too many people carry, and I want to help fix that. If I can shine a spotlight on the issue, have it included in Lib Dem policy and challenge Scottish Government to do something to support people with ME and to better understand the nature of it, that feels like a useful step in what I now realise is a long and difficult journey.”
This is the power of a grassroots movement – the ability of a community at a local level to influence change at a national or international level, and you don’t get much more local than the school gates! There are many ways in which this community can pull together to change the narrative on ME. As the fantastic advocacy work of Emma Walker’s friend demonstrates, just telling your story, answering the ‘how are you’ question honestly, bringing the reality of ME out of the shadows and into everyday conversation can be a powerful advocacy tool.
Many thanks to Emma Walker for supporting people with ME. #MEAction Scotland will have a stall at the conference on Saturday to educate members on ME.
If you’re a member of a political party, please consider pursuing M.E as a party policy. Ultimately we need cross party support to succeed. SNP, Labour, Conservative or Greens, which party will be next? #MEAction Scotland is willing to advise! Email us at [email protected].
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the