#500miles4ME: taking awareness raising to a different level!

Rob summed up his motivation and fundraising activities for his #500miles4ME fundraising walk in a previous blog. He now reflects on what made him take the decision to do more to raise awareness of ME:

In one of my #500miles4ME daily posts on social media, I said something like,

“If you have a family member, friend or colleague who has ME, one of the best things you can do for them is to learn about the illness”.

I decided to push the boat out and approach some people we admired in the ‘ME world’ to see if they would record a discussion with me over Zoom whilst I was up at Paxton’s Tower around sunrise.  But would they be willing?

Who am I, after all? Well, I had to talk to myself and say,“Maybe you’re actually a kind of ‘expert’, too – just a different kind. You’re not a doctor and you haven’t got ME, but with 3 in the family sharing this diagnosis, you have nearly 30 years of experience of living close to it, 20 of those caring for one child, and 10 years for two children, at a severe level, and interacting with the health professionals on their behalf. Maybe you’ve got a right to speak up and be heard for that reason alone”.

I’ve spent most of my career in the world of additional (special) learning needs, and latterly, with those whose very complex needs require Health, Education and Social Services to work together to find solutions to difficult problems, so I’m also used to dealing with fellow professionals across a range of disciplines.

But mostly, I was emboldened by my son’s plight – 20 years ill, unable to access education, employment, relationships, unable now to read, get himself to the toilet, or step outside into the light. For his sake, why should I be afraid of anything, or anyone? Why not give it a go?

I wanted those close to us to have a better understanding of ME – I was thinking about friends and family and work colleagues, and wondering what I’d want them to know – and if I got that right, there would be others, including health professionals, who might look in, listen and learn. So, the discussions would need to be accessible and have ‘cred’ at different levels.

Preparation and practice!

From a practical point of view I realised there would be a lot of preparation for the video recordings. First I had to invest in some gear – a small tripod, a remote shutter, a Zoom account – and then learn how to use Zoom and how to record, which was fiddly using a small touch screen, but I found there was a good signal and acceptable quality video from the Tower.

I would need to draft an outline, discuss possible content and agree beforehand a series of questions with each of the interviewees. And watching the weather forecast a few days ahead and choosing a morning without rain or too much wind would be important, and on the day, finding a sheltered spot where I could get set up.

It quickly became clear that there was plenty to learn. I had to re-record 2 discussions because, well, I was a beginner at interviewing and they just weren’t good enough. This was asking a lot of my interviewees! And video-editing proved time consuming for the same reason.

5 Discussion at dawn interviews

In the end we published 5 video interviews: with a doctor, a physiotherapist and reps from the 3 charities I was raising funds for. I had lots of ideas for other discussions, but ran out of time and would consider doing more in the future.

I was delighted to get some good feedback from people afterwards – family, friends and others unknown who’d seen the videos – saying e.g. it had given them a much better understanding of the illness, they’d learnt more about the charities’ work etc, and, from people with ME, thanks for raising awareness .

A ‘good story’ for the media

My family is Welsh speaking, and I was approached by BBC Cymru Fyw (BBC Welsh language on-line), who’d heard about our experience of ME and the walks and wanted to do an article. We were told it made a ‘good story’ which would also probably be of interest to English language TV/radio and newspapers in Wales. We discussed how much publicity we thought we could handle as a family, and decided that we would limit it to just this one article.

Clearly, there’s a need for wider publicity and awareness about ME in Wales in general, and I guess this decision will have reduced the impact we might have made to some degree – but this was the right thing for us in our circumstances,  and ‘you can only do what you can do’.

In the event, we had some really good feedback. You can read the article in Welsh here, and an English translation here.

Next time in Blog 3 I’ll talk about my Discussion at Dawn with Dr Nina Muirhead

You can watch the Discussions at Dawn by going here.