#MEAction is supported by hundreds of volunteers from all around the world. We recently spoke with some of our wonderful and dedicated volunteers working with #MEAction UK and #MEAction Scotland.
Today meet Sian and Sarah who explain why they got involved and how they support #MEAction UK.
#MEAction is always looking for new volunteers with ME and healthy ME allies to join our team. If you are interested in helping, please get in touch via this form.
Sian Leary
What is your relationship to ME?
I’ve had ME for over 7 years now, about 4-5 years of which I spent severely ill. I’m very fortunate to be in a better phase at the moment, enabling greater engagement in the world and in advocacy, and want to use that energy to fight for my own right to healthcare, as well as others with ME. In part this is because I know just how precarious my health remains, and that even though I am in a better phase, I am a very long way from well, and it could slip from my grasp at any moment.
What made you want to get involved with #MEAction UK activism?
I have been incredibly impressed with the work of ME organisations across the UK, they do an amazing amount to support people living with ME as well as their carers. I was interested to join #MEAction as I felt the organisation filled a gap around grassroots activism and advocacy that could make a real difference in the UK and across the world. The emphasis on campaigning and philosophy that the biggest changes would come from forcing institutions with power to listen resonated with me.
Working with other people with ME, carers and allies: learning from them; making decisions together; navigating disagreements to reach a stronger place – this is what gives #MEAction its power.
Tell us a little about your experience with ME activism. What are the highs and lows?
There have been a whole load of highs, completing each project is a win, and knowing that we are changing perceptions in the process.
– Leading on the “Your Experience of ME Services” survey and report was a serious challenge but such an important exposé of mass failure of healthcare for people with ME.
– Reading the 1200 messages that formed the 6-metre-long card calling on NICE to take ME seriously could definitely be described as a low, but I was proud to be able to create something visually compelling from so many individual voices.
– Our film “I got a virus” for #MillionsMissing 2020 felt particularly powerful. It was an honour to direct that.
– I’ve made some amazing friends through working together on projects, who I know will be friends for life.
The lows are what you will guess – crashing/relapsing, be that myself or other people. I have at times chosen to push myself beyond my limits to do something and suffered the consequences. For me it hasn’t been permanent, but for others it has. This is a cruel illness, and pacing will always be a work in progress.
What gives you hope for the future?
Some of the big projects starting up across the world, including the DecodeME study of 20,000 participants with ME and the Priority Setting Partnership faciitated by the James Lind Alliance!
Working with some amazing people who are so committed to creating change, and ultimately knowing that we are on the right side of history.
What area of our work do you participate in?
UK General, Social Media, Parliament, NICE, Science and #MillionsMissing.
Why should others join #MEAction?
Honestly because we are open and friendly, change is coming, and it is incredible to be a part of that. Because you get to partake in projects without your abilities or daily experience with ME being questioned. But also, because we need you, we know there is always more #MEAction could be doing.
And for those like me who got ill at a young age: I had little experience of work, yet I have learnt so much through volunteering with #MEAction, been able to take part in and then progress on to leading projects that I wouldn’t have even dreamt I was capable of a year previously.
What is something not directly ME related that you love?
Ahh there are so many things – birds has to be first on the list and photographing them second. Though I guess that is ME related as I only started falling in love with them when sofa-bound and 2 goldfinches began visiting my window, then turned up with 3 juveniles one day.
I enjoy graphic design and creating things, love a good spreadsheet, can easily get stuck into figuring my way around new software, but also yearn for the outdoors and the peace of a good field to lie in.
Sarah
What is your relationship to ME?
I’ve had ME for 6 years.
What made you want to get involved with #MEAction UK activism?
I heard about #MEAction UK after seeing the film Unrest and attending #MillionsMissing London. I wanted to help educate people about ME and support those affected by it.
Tell us a little about your experience with ME activism. What are the highs and lows?
Highs include attending #MillionsMissing London and getting to know some wonderful ME activists. Lows are seeing the devastating impact ME has on people’s lives and the gaslighting we all too often have to endure, especially from the medical community.
What gives you hope for the future?
Starting to see a shift in attitudes towards ME. Biomedical research. The dedication of ME campaigners around the world.
What area of our work do you participate in?
UK General, Press, Social Media, NICE.
Why should others join #MEAction?
The work #MEAction does is so important and, especially at such a pivotal time, we need the support. The team is fantastic, friendly and beyond understanding, as many volunteers have ME themselves or have cared for someone with ME.
What is something not directly ME related that you love?
I love nature, books and cake.
Do you want to join our friendly volunteer team and get broad experience within a small organisation? Volunteer now!
