This month we want to honor the work of three women with #MEAction Scotland – Emma Shorter, Kim Gurav and Janet Sylvester – who have done an incredible job advocating for people with myalgic encephalomyelitis.
The partnership began last January when Kim and Janet wanted to organise a screening of Unrest, which – long story short! – led to an amazing screening of Unrest before an audience of 70 people at the Scottish Parliament. In May, the women took their activism to the streets by helping to organise the impactful #MillionsMissing protest in Edinburgh.
Last month, they successfully launched a petition and gathered 7,000 signatures calling on the Scottish Government to invest in biomedical research into ME, patient care and ME education for health professionals. On June 7th, the Scottish Parliament’s Petitions Committee called the group to testify about the treatment of ME. Watch Emma Shorter testify before the Scottish Parliament.
We are so excited to introduce them to our wider community, and know that you will find them inspiring, too! (Unfortunately, Emma was not well enough to do the interview.)
What made you want to get involved with #MEAction advocacy?
Janet: To be completely honest, the answer is my daughter, Emma Shorter! She’s had ME for five years since she was 19, and decided in February 2016 that she wanted to organise the first #MillionsMissing Scotland event. I offered to help her, and working with Emma made me aware of all the issues surrounding the PACE trial and the treatment of people with ME. Emma did a huge amount of research into the history of ME and how the PACE trial had been conducted: she made me realise that we could really make a difference if we worked together to raise awareness in Scotland.
Kim: I got involved with ME advocacy almost by mistake. I heard of the amazing film about ME that was coming out, and there didn’t seem to be any screenings organised in Edinburgh, so I decided to see what I could do from bed. I thought Unrest was a unique way of raising awareness about ME, and that it could do a powerful amount of good. I knew of this girl called Emma Shorter in Scotland who did a lot of really good campaigning for ME. I got in touch with her and another activist, Janet Sylvester. Janet was keen to help out with Unrest screenings, and things snowballed from there.
Tell us a little about the experience of this advocacy work. What have been the highs and lows?
Janet: It’s been a real journey with lots of highs, and really very few lows. We started with #MillionsMissing in May 2017 outside the Scottish Parliament – that was successful beyond my wildest dreams, with a great turnout and fantastic media coverage. From this, we built up a small group of people who wanted to help us, plus had contact and support from the established ME charities.
Emma was very ill after #MillionsMissing, but by October she was working on a petition to the Scottish Parliament which she pulled together despite crashing several times: a huge highlight for me was the reaction to the petition when we launched it in May. The response from people signing it and wanting to get involved was phenomenal.
While Emma was working on the petition, I teamed up with Kim to work on screenings of Unrest and organise an event at the Scottish Parliament in January. Unrest proved to be hugely powerful – I think we ended up with six screenings in Edinburgh (not all organised by us!), and we suddenly had an influx of new volunteers who wanted to help. This was just as well, as organising the event at the Scottish Parliament was very hard work – the most difficult bit was getting MSPs to come along, and Kim did a huge job on social media and via email to get people to email their MSPs. It worked! We had 16 MSPs at the event (apparently this was one of the largest turnouts for an event of this kind at the Parliament) plus about 60 people with ME/families/support groups/charities. The event felt incredibly positive as it involved so many people.
And finally, the huge high of #MillionsMissing Edinburgh in 2018 – a fantastic turnout, great speakers (my biggest thrill was when Gillian, one of our volunteers in Glasgow, emailed to say that Stuart Murdoch and Carol Monaghan had agreed to speak!) . It really was the most amazing day – and an extraordinary feeling that we had managed to pull together an event like this in the centre of Edinburgh with people traveling from all over Scotland to support it. I can’t describe how it feels to realise that we had such huge support, and that people really felt we were making a difference.
Lows? Mainly worrying about the impact of advocacy on everyone’s health (as Emma’s mum, I admit to mainly worrying about Emma). I wish there was a way of doing all this without feeling it might make people with ME ill.
Kim: For me it started with a series of six screenings of Unrest in Edinburgh – not all organised by us – culminating in a big Unrest event which Janet organised at the Scottish parliament, attended by MSPs. Working with Janet was so inspiring, and it was very rewarding to be able to impact so many MSPs. I loved seeing the incredible response from all of the regional ME support groups who went out of their way to send representatives to attend. It was the first time I’d seen so many people across Scotland get together to campaign for ME in this sort of way.
In the spring of this year Janet, Emma and I decided we needed to organise things more officially so we became #MEAction Scotland, an affiliate of #MEAction UK. We rebranded our social media accounts from #MillionsMissing Scotland to #MEAction Scotland (although the Facebook page name is still to be changed due to a hitch) and recruited new volunteers. Emma led the launch of a fantastic Scottish petition timed with our #MillionsMissing Edinburgh event in May.
One of my main focuses in the last few months has been our social media. I took on running this, and since it’s far too much for one person, we’ve gradually built up a team. It’s been amazing to see our following shoot up, and with all the interest in our Scottish work we have gained quite an international following too. Because of this, when we need people to take action it’s easy to reach hundreds, and even thousands of the ME community. We saw that with the thousands of petition signatures, and again recently with getting people to contact their MPs before the Westminster debate.
Recent highlights have been the massive success of #MillionsMissing Edinburgh and gaining a meeting at the Scottish Parliament with the Petitions Committee. The phenomenal interest in these on social media has been very exciting. And I love that what we’re doing is giving hope to people around the world. And inspiring others in their advocacy too.
What is your story with ME? What was life like before you got sick?
Janet: I don’t have ME, but have cared for and supported Emma since she got ME. Her illness has had a big impact on our family, as it does for everyone who cares for someone with ME. I retired from work in December 2017 so I could continue to support Emma and devote time to help Emma and Kim with #MEAction advocacy.
Kim: I spent two years fighting to work out what was wrong with my health, and begging doctors for help. Eventually I got a diagnosis. Then I faced the same thing that thousands of others have faced – there was no help. There was no pathway for treatment. There wasn’t even basic support. So I declined. I would have been moderate when I finally got the diagnosis. Eight months after that I had declined to severe and became completely housebound.
Before I had ME I worked in HR at the University of Edinburgh. I had a good job and loved the work I did, though of course it had its ups and downs and could be pretty stressful at times. I had a life and a career. I had fantastic friends I loved spending time with, I enjoyed seeing my family, especially my seven nieces and nephews. My boyfriend had proposed and we were about to get married. But my health was failing, and I could barely keep up with my job. Not long after I had to give up working entirely, I crawled through our incredible week-long wedding in India (my husband is Indian). One of the happiest – and most exhausting – weeks of my life! When we flew back to Scotland and moved into our new flat I slowly realised there was no way I would get through our Scottish wedding – due to take place a few months later with our Scottish family and friends. It was absolutely heartbreaking. Eleven of my friends and family had made it to India, but 90 or so friends and family were due to celebrate with us in Scotland. Of course I was exceptionally lucky to even be having two weddings – who has that?! – but if we’d known the Scottish wedding would be cancelled, so many more people would have come to India or done things differently. It was gutting. Such a huge loss.
That was a year and a half ago. From that time onwards I have gradually, and sometimes rapidly, lost each aspect of normal life. Not quite the start to married life that we were looking forward to! My husband has become my full-time carer on top of his job. I can’t go out at all, not even to the doctors. I can’t see friends often, I almost never see my nieces and nephews. Every aspect of normal life has changed. The loss has been enormous. And added to that is the misery of being blamed and misunderstood. To get a chronic illness is devastating, to get ME, which is maligned and belittled, is beyond words.
We’ve all had tragedies in our experience with ME. These have been some of mine. So this is why we campaign, this is why we fight, this is why we band together to make a difference. Because it doesn’t need to be this way. We do not need to suffer as much as we do, if there simply was any care, if there was adequate support, if there was any biomedical research, if doctors, politicians, our families and friends recognised this as a real and extremely serious illness – our lives would be very, very different. So we give every ounce of our spare energy to make sure that that happens one day.
What gives you hope?
Janet: That’s a difficult question, as I feel what we are doing in Scotland is going to take time to come to fruition. The recent debate in Westminster, gave me some hope, but I feel we need to see significant progress from politicians in the Scottish and UK Parliaments before I really believe anything will change. The recent announcement of NIH funding for OMF has probably given me the most hope that things will change for people with ME.
Kim: Finding myself involved in ME advocacy has given me an enormous sense of hope – which was somewhat lacking before! It has also had the unexpected benefit of a sense of productivity; achieving things, being of value. Because I’m completely housebound and have severe ME, I just didn’t think it was possible to do anything. I’m lucky I fell into this work and discovered actually how much you can do online, and the remarkable amount you can achieve when you’re connected with others (especially when they’re such fantastic people!). That has given me a lot of purpose and hope. Things which were in pretty short supply for many dark months.
And it’s wonderful being able to make an impact. It’s remarkable really. Of course we’ve got a very long way to go, real change takes months and years. But learning from other movements – abolishing slavery, votes for women, LGBT+ – we do what we can and keep going. And once the wider public begin to become aware of the injustice and inequality people with ME are suffering, people are willing to get on board and give their support.
Janet: I’ve realised that, amazingly, a small number of people working together can make a difference and potentially effect change. I would not have believed when we started that it would get so big! I guess my advice is for people who are thinking of getting involved in advocacy and campaigning – do it, because whatever level of involvement you want to have can make a difference.