Meet the Volunteers: Denise and Mal

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#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 Denise and Mal 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

Denise

What is your relationship to ME?

My son became ill at 14 years old.

What made you want to get involved with #MEAction UK activism? 

I first heard about #MEAction through watching Unrest and then handing out questionnaires at screenings. I then organised a London #MIllionsMissing event and gradually became more involved. 

Tell us a little about your experience with ME activism. What are the highs and lows? 

The highs are seeing people with ME and allies come together for an event like #MillionsMissing, the ‘I Got a Virus’ film, lobbying NICE and making change happen. There are setbacks and the lows are realising that we still have a long way to go. However, looking back over the last few years and the changes that have already happened, gives me the motivation to keep on.

What gives you hope for the future?

The public’s view of ME is changing and I hope that the new NICE guidelines will reflect all the hard work that so many people have put in.

What area of our work do you participate in? 

UK General, Parliament, NICE and Press. 

Why should others join #MEAction? 

It’s great to be able to do something tangible and positive to change the situation for people with ME.

What is something not directly ME related that you love?

I love reading, writing, dark chocolate and walking.  

Mal

What is your relationship to ME?

My partner has had ME for over 25 years. Although I didn’t know a lot about the illness when we met, I quickly learned and that led me to attending the first #MillionsMissing event in London. It all kind of snowballed from there.

What made you want to get involved with #MEAction UK activism? 

The UK has several charities and other organisations involved in various aspects of ME support and advocacy, but the global nature and the fact the MEAction is pushing hard for policy change appealed to me, as did the focus on robust science. All of the groups have their place in making the world better for people with ME but MEAction just meshed better with my skills and areas of interest. 

Tell us a little about your experience with ME activism. What are the highs and lows? 

Forming friendships with a diverse group of people online has been a strong point as well as seeing actual incremental progress being made with regards to ME being taken seriously by politicians.

The biggest downside has been having to regularly watch amazing people step back from volunteering as their health has declined. Yes, a lot of volunteers push themselves but there is great support and a strong ethic that volunteer’s health always comes first. 

What gives you hope for the future?

We are winning the awareness battle – there is a way to go yet, but society is taking ME more seriously now than even 4 or 5 years ago.

What area of our work do you participate in? 

UK General, Parliament, Press, Science, IT, Web and Marketing support.

Why should others join #MEAction? 

You can do as little or as much as you want and everything you do has an impact on improving the lives of millions around the world. Whatever your skills, there is always a place in the team of volunteers.

What is something not directly ME related that you love?

I’ve been a sucker for video games since I was 4 years old – somehow I don’t think that will ever change!


Do you want to join our friendly volunteer team and get broad experience within a small organisation? Volunteer now!

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