Malcolm Bailey from the UK has bailed us out with his tech savvy skills on more than one occasion. We are so lucky to be able to rely on his dependable help for projects both small and large.
As he describes it, ” As a healthy ally I’ve done everything from editing videos, ordering and distributing 10,000 leaflets, managing the UK social media accounts, acted as general UK coordinator for a short time, to sourcing a pdf of an old obscure German book on Polio.”
We need more healthy allies like Mal who can contribute their time and talent on an ongoing basis! Enjoy our interview below with Mal as he speaks about what brought him to the movement, and about the work he has done for #MEAction.
What made you want to get involved with #MEAction advocacy?
My partner has had ME/CFS for almost 25 years and while it was a condition that I was aware of it when we met, like most people I didn’t know any real details about it or how it affected lives at a personal level. Having come to understand it more, I attended the first #MillionsMissing demonstration in London, partly as a show of solidarity and partly to see what what the levels of support were for pushing advocacy and change in the UK.
Although there are many great charities and organisations related to ME/CFS, I decided to volunteer my time with #MEAction for a couple of reasons. Having previously spent some time working in a marketing company and being primarily an IT nerd, #MEAction resonated with my skills. As an organisation they ‘get’ online and social media advocacy. What is being achieved with very limited resources is pretty amazing. (I’m sure most people think the staff is much larger than it actually is). #MEAction also aligned with what I believe are the important goals right now. Of course rigorous science and finding a cure are important, and ultimately the end goal, but this requires funding. Funding that is only going to come from raising awareness politically and in the wider population, so MEAction’s drive to get more visibility for people with ME is something I could get behind.
Oh and I also got involved because, quite frankly, everyone was just really nice and friendly which just kinda drew me in.
How long have you been volunteering with #MEAction?
I got involved fairly quickly after the 2016 #MillionsMissing events and before I knew it was helping on some of the technical issues with emails, the website and other general IT bits.
My involvement has since been a bit all over the place in regards to what I actually do, I sort of have picked up various roles depending on where there is currently a need, mainly within the UK team but also dipping in to help on ME-pedia and the main #MEAction site on occasion.
As a healthy ally I’ve done everything from editing videos, ordering and distributing 10,000 leaflets, managing the UK social media accounts, acted as general UK coordinator for a short time, through to sourcing a pdf of an old obscure German book on Polio.
I manage to balance my volunteering with my day job by dipping in and out of the shared workspaces when I get 5 spare minutes during the day. In order to accommodate the volunteers with ME/CFS, most discussions are done in a fairly asynchronous way so that there isn’t any feeling of pressure or fear of missing out of important discussions. It works surprisingly well and allows everyone to contribute only as much as they feel comfortable with.
Tell us a little about the experience of this advocacy work. What have been the highs and lows?
Without doubt the experience is a positive one, like everyone else involved, ME/CFS is a personal issue and to be doing something that is demonstrably helping move us forward is rewarding.
i) Forming friendships with a diverse group of people online and then getting the chance to meet some of them at future demonstrations.
ii) Tying up a counter at the local post office for over an hour while sending out 22 boxes (35kgs) of leaflets for the 2018 #MillionsMissing. It takes longer than you’d think to weigh and label each item! The guy serving me was certainly more aware of ME/CFS by the time we finished!
iii) The volunteers I see working together on a regular basis are really inspiring. So many give so much of themselves for a cause that is personal, and there are some who go above and beyond anything that could reasonably be asked of them.
There are three not so great aspects I’ve experienced
i) Infighting between ME groups and individuals. Occasionally there seems to be someone, either an individual or as representing another organisation who just can’t seem to see the bigger picture. I can think of 3 or 4 incidents where someone has dogmatically held an obviously bad position or deliberately taken action that harms the community overall. I understand that pwME are so used to having to fight their corner but it can be frustrating seeing wasted energy and effort dealing with these situations.
ii) Due to my volunteering I’ve become aware of how much of a battle there actually is to defend shoddy science. It’s something we’re slowly and surely overcoming, but again here is frustration at having to even have this fight.
iii) The other, and harder on a personal level, downside is frequently having to see many volunteers step back from volunteering due to a decline in their health.
What is your story with ME?
I met my girlfriend in 2012, by which point she’d been living with ME/CFS for almost 20 years and varying levels of health.
P.s. She’s awesome!
What gives you hope?
We are winning the awareness battle – the debate in the UK Parliament this year was a milestone with so many MP’s all unequivocally on ‘our’ side; this was almost unthinkable even 5 years ago. There are also some exciting results coming from various scientific endeavors with promising early results that might help understand ME/CFS and work towards a cure.
I’m an optimist by nature, and everything is going in the right direction, with more volunteers we can speed that up though. (Yes that’s my shameless and unsubtle plug – I did say I’d worked for a marketing company)
When you first get involved with #MEAction it came seem like a bit of a whirlwind with so many things going on – but it is all structured and under control I promise!
I’d guess especially for people with brain fog this could be seem a bit daunting at first so say ‘hi’ (everyone is very welcoming) and just observe for a week or two. Then get involved with something small like helping to draft one of the daily tweets or make some edits on ME-Pedia.
There is absolutely zero pressure on volunteers to do anything beyond their energy levels, so don’t think that volunteering ties you in to any sort of commitment.
For any potential healthy allies, I’d definitely recommend volunteering. I personally don’t have the time or expertise to work directly towards finding better treatment or a cure, but as ME/CFS affects someone close to me, I can at least make a difference here.