#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 Karima and Pam who explain why they got involved and how they support #MEAction Scotland.
#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.
Karima
What is your relationship to ME?
I was diagnosed 5 years ago and I believe I have been unwell for about 12 years. Fortunately at the moment my ME is mild. It still affects me every day but I am lucky enough to do lots of things. I’m very aware that this isn’t the case for lots of our community and I want to do what I can to help make things better.
What made you want to get involved with #MEAction Scotland activism?
I moved to Scotland from England and was looking to connect with people who understood what life with ME is like. I heard about #MEAction Scotland’s #MillionsMissing at the Scottish Parliament in 2017 and offered to help out with the 2018 event. It was brilliant to find people who not only understood life with ME but were fighting to make it better. I soon realised there was a lot of work happening all year round, far beyond #MillionsMissing, and I’ve been helping where I can ever since.
Tell us a little about your experience with ME activism. What are the highs and lows?
Being part of ME activism has been a huge part of my journey with ME. It’s helped me understand my health, try to come to terms with it, and learn about what we can do to fight injustice. I’ve connected with so many people who impress and inspire me. On the bad health days, when sadness or frustration takes over, it gives me solace knowing that I am part of a movement working to make things better for people with ME.
For me the lows are feeling like I never have the time or energy to do ‘enough’ for the cause. But the team around me are so supportive and tell us all just to do what we can, when we can. The highs are those moments when it feels like change is happening; when #MillionsMissing hits the news or that conversation happens with someone with power. It is often slow and at times infuriating, but the steps forward – however small they might seem – keep me going.
What gives you hope for the future?
At the moment I’m feeling very excited and hopeful that DecodeME – the largest ever biomedical study of ME – is taking place in the UK. The Principal Investigator, Professor Chris Ponting, is very supportive of #MEAction Scotland’s work and has been involved with numerous projects over the years. The study will take time to yield results but the fact that it is happening is huge.
What area of our work do you participate in?
Scotland General, Parliament and Press.
Why should others join #MEAction?
Being part of #MEAction Scotland means being part of a group of people who really care about improving life for people with ME. We are all volunteers and everyone is very supportive and kind. As you can imagine, there are no small tasks ahead of us and we need all the help we can get!
It’s very flexible and we understand that different people will do different things depending on their energy, skills or interests. All it starts with is a chat, so please get in touch if you’re interested.
What is something not directly ME related that you love?
Since I was a child I have loved books and reading. A way to meet other people and explore other places without getting off the couch has always been magic to me. I have a ‘to read’ list longer than I can remember and bookshops are my happy place.
Pam and Rannoch
What is your relationship to ME?
I’m a Carer.
What made you want to get involved with #MEAction Scotland activism?
The film Unrest.
Tell us a little about your experience with ME activism. What are the highs and lows?
The highs include the feeling of community as we work together toward the same goals. The lows include seeing gifted volunteers having to step down due to illness. There is, however, a clear understanding among volunteers that it is the right thing to do when this happens, and no pressure is applied.
What gives you hope for the future?
Achievements so far.
What area of our work do you participate in?
Parliament and Scotland General. I am interested in topics around medical education and the NHS.
Why should others join #MEAction?
‘Action’ is at the core of #MEAction UK and #MEAction Scotland and a good team of volunteers with a range of skills is working together to ensure progress continues.
What is something not directly ME related that you love?
My rehomed dog, Rannoch!
Do you want to join our friendly volunteer team and get broad experience within a small organisation? Volunteer now!
