Meet the Volunteers: Paul and CJ

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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 CJ and Paul 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

CJ

What is your relationship to ME?

I’ve been ill for 3.5 years with ME and Fibromyalgia. I’ve been diagnosed for 2.5 years.

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

I wanted to help get information about ME to other sufferers and their families, friends and carers. I wasn’t given any information on the condition itself or how to apply for social care. I don’t want anyone else to struggle.

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

High points for me is being involved with our NICE campaign to remove GET (Graded Exercise Therapy) and CBT from current guidelines, by being able to share progress on this on social media. The low point was hearing all the stories of how people have been harmed by such treatment. 

What gives you hope for the future?

More funding on biomedical research for ME. More training to healthcare professionals, and for NICE to change their current guidelines ASAP.

What area of our work do you participate in? 

Social Media and NICE. 

Why should others join #MEAction?  

We are a lovely team to work with. We have many campaigns and projects for you to find your niche.

What is something not directly ME related that you love?

I look forward to our weekly office hour video call as this can be my only interaction with others outside of my family. It’s also the only meeting I’ve done where it’s still ok if you’re in your bed! 

We also have many private support groups on Facebook where you can ask anything or just vent how you feel and someone will always be willing to listen and help.

Paul

What is your relationship to ME?

I’ve had ME since 2016, first mildly (if it can ever be described as such) but I worsened in 2019 to become more moderately affected.  I’m fortunate in that I’ve improved enough to allow me to work part time from home and I have a supportive employer but my life is mainly confined to the house. Like most sufferers my pre-illness hobbies and activities are now just a memory and life is fairly limited in comparison.

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

The frustration that many with ME have such poor support, and that there really is little quality research into the biomedical causes which might lead to treatment or cure.

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

For me the high is feeling like I’m doing something to help. The contact with fellow volunteers is nice and the satisfaction of being able to contribute in a little way gives me a sense of accomplishment.  The low is wanting to do more but having to balance my contribution with home life and work.

What gives you hope for the future?

That there is some real quality biomedical research being undertaken at present.  Recent discoveries about a ‘factor’ in the blood which impacts on cellular activity, and the DecodeME project, which starts in earnest in 2021, give me hope that we may understand the cause of ME in the next few years.

What area of our work do you participate in? 

UK General, Parliament and NICE. 

Why should others join #MEAction? 

With more people onboard then more effort can be put into the advocacy projects, which help raise awareness for people with ME.

What is something not directly ME related that you love?

Wildlife and nature. This summer I spent a fair bit of time laying on the lawn watching mining bees or sat by the pond watching the birds in the garden.


Get to know us, meet more volunteers!

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

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