Meet the Volunteers: Hayley and Susan

#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 Hayley and Susan 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


What is your relationship to ME?

My daughter has suffered with ME for 9 years. 

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

There is a real lack of understanding for ME generally as well as within the medical world. I want to raise awareness and educate as many people as possible. 

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

#MillionsMissing 2019 was definitely a high. Just being in a space with people who get it was so refreshing. 

The lows are definitely the battles. Literally everyone I come across has either never heard of ME or believe it’s the “one where you’re tired all the time”; it’s very energy consuming. 

What gives you hope for the future?

Research into ME is discovering some really exciting things. I believe we are on the verge of a diagnostic test which would be amazing. Also, I think we can learn from research into Covid-19. 

What area of our work do you participate in? 

UK General, Science and NICE. 

Why should others join #MEAction? 

Because it could be you or a loved one. ME doesn’t discriminate and it literally ruins lives. People with ME deserve health equality.

What is something not directly ME related that you love?

My family and my new career, as I have just qualified as a midwife. Being with women for the birth of their baby is a privilege. 


What is your relationship to ME?

I’m a ‘healthy ally.’

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

I’ve known Emma Shorter (one of the founders of #MEAction Scotland) since she was a child – her mum, Janet, and I used to belong to the same baby-sitting group! In 2017, after attending Scotland’s first #MillionsMissing (organised by Emma) I decided I’d like to help in any way I could. Although I’d been aware of ME (a friend of mine was diagnosed with ME in her early 20s), like most of the general public, I had no idea of how truly desperate the situation regarding research and treatment was.

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

Highs would definitely include the many talented and committed folk I’ve met since I started volunteering for #MEAction Scotland, whose breadth of knowledge, skill and determination I find genuinely inspiring. Lows are relatively few but being regularly reminded of the deeply entrenched disbelief, mockery and gaslighting people with ME still face is right up there.

What gives you hope for the future?

The DecodeME study, the new priority-setting partnership run under the auspices of the James Lind Alliance and, bizarrely perhaps, the coronavirus pandemic, which has seen unprecedented interest in ME from the media as well as the public as a whole.

What area of our work do you participate in? 

UK General, Scotland General and Social Media. 

Why should others join #MEAction? 

I think now is the perfect time to join #MEAction UK or #MEAction Scotland. At the moment, as mentioned above, there are several opportunities to really make a difference to the lives of people with ME – and the existing volunteers are a great bunch of people!

What is something not directly ME related that you love?

I love searching through charity or thrift stores for beautiful, quirky or useful things for my home.

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


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