£6004 raised for ME charities!

Rob Messenger completed his 500 mile fundraising walk for charity on 5 November 2023, and by mid January 2024  he had raised a grand total of £6004 (including GiftAid) for 3 charities:

• WAMES  £1530
• Invest in ME Research  £2281
• ME Research UK  £2193

This was an amazing achievement, for which all 3 charities are extremely grateful, but why do it?

Rob explains:

Why?

For many years 3 people in my family have lived with ME, we all have ’lived with ME’ to some extent.  My wife and I have been full-time carers for our son who has been ill with very severe ME for 20+ years, without specialist ME care to support us. We have had to inform and educate professionals and advocate for ourselves. I began to be overwhelmed with a sense of just standing still, waiting, getting worn down, but still feeling the need to do something, a need for self-agency.

I have real concerns for the future as I need to stay fit and healthy as long as possible, to continue my caring role. I was becoming more aware that I personally needed to counter the negative physical, mental and emotional challenges I was facing, because one day I will be unable to be my family’s carer.

The desire to do something to improve awareness and services for pwme in Wales, and raise money for research, had always been there but maybe NOW was the time to do something bigger.

Do what?

The idea came to me whilst walking back down from Paxton’s Tower which is 2½ miles from our house. Thinking of the Proclaimers’ song with the words “I would walk 500 miles”, I wondered if I could do that walk 100 times (2 ½ +2½ = 5) to accomplish 500 miles. That might catch people’s attention.

I had just witnessed an amazingly beautiful sunrise from the Tower and felt a sense of awe and wonder, but I was unable to feel more than a brief superficial sense of joy because “My heart was broken…sorrow, sorrow”. Again, the Proclaimers’ music helped to express how I felt (‘Sunshine on Leith’).

This underlying grief, sadness and loss is part of the daily experience for people living with ME (pwme) and their carers – you carry it with you all the time (this is not depression, by the way).

But, could I get up there every morning to see the sun rise? I liked the idea of the sun rising for people with ME. It is a hopeful image for progress in research, treatments, services, understanding – everything.

The walk involves 650 feet ascent and descent. 650 x 100 = 65000 i.e. 2x the height of Everest…sounds impressive (even if there’s not much chance of falling into a glacier or succumbing to altitude sickness)!

Since I’d be doing it over several months, could I also use it to raise awareness and money? I wanted our friends and family, as well as the professionals we’re involved with, to have a clearer idea of the experience of ME and the growing understanding of the illness arising from biomedical research. So, this would be the kind of target audience, but I’d hope for wider interest, including more from Wales.

I also would want donors to know more about the work of the charities they’d be helping to fund. Would relevant people be willing to be recorded on video? What if I did the recordings from the Tower? At dawn? Could this idea appeal in some way?

Could I meet the challenge?

I’m 68 with dodgy knees. An X ray just before I started the walks found an unidentified metal ‘foreign object’ in my left knee – possibly the end of a needle (although it was my right knee which turned out to be most troublesome!)

Getting up to the Tower by sunrise would mean rolling out of bed and leaving home in the dark, and very early, in all weathers. In June when I started that would be 3.45am. Could I keep this up?

How would it affect the family and my caring responsibilities?  I’m ‘on call’ 24/7, but the hours of 3-7am are probably when I’m least likely to be needed. I could be up to the Tower and back in 2 hours, so this might be feasible, and I’m not too far away. But would I get too tired, and how would this affect my caring role and, therefore, the rest of the family when we’re already operating at our limit?

Checking out the possibility:

I did several practice walks to make sure I could get myself up that early and manage it physically – challenging, but OK.

I then sounded out the family – got the “Go for it” message – the younger ones offering to set up a website, coordinate social media and video edit. We realized we would however need to limit the time spent on media coverage and publicity, even though this might reduce potential impact.

I checked the ‘signal’ at the Tower, and found it was strong, did a trial video recording, and it worked!

Fundraising:

I hate asking people for money. Fundraising is not my thing, but I was very moved and encouraged by the way people responded – so much kindness and generosity! I realised some people who know us (family and friends) welcomed a chance to be able to donate, because it meant they were also doing something to support us (especially our son who has been so ill for so long) and were able to show their love and concern, when most of the time, it is hard for them to know what they can do.

As news got around I had donations from friends and colleagues I hadn’t seen in years, which provided opportunities to get back in touch. Thanks to social media, and re-posting by the 3 charities, I also received donations from others we’d never met, from the UK, Europe and USA. It was great, to feel part of a wider community of people all sharing similar experiences and concerns.

Who to support?

I decided to support three charities rather than one. WAMES was first on the list because Wales is so under-served in terms of ME provision and I had been involved with the charity’s work before. It’s a very small charity trying to do a very big job on minimal income and human resources.

I also wanted to support biomedical research, and we already had links with MERUK and IiMER, and admired their work and wanted to let others in our target audience see it. We’ve taken part in one of MERUK’s research projects, and often attended the IiMER International Conference.

By selecting 3 charities, I hoped to widen the audience and broaden the appeal of the campaign.  The down side could be that total amount of money attracted would be shared, but overall I think this was a good decision. I contacted the charities, and was encouraged by their support.

How to publicise?

IiMER and MERUK sent me some T shirts, and we had a WAMES T shirt printed. I wore these every day on the walks and shared them round when others joined me – they had the honour of ‘wearing the shirt’.

My daughter and son-in-law set up the website www.500milesfor.me and social media (Instagram, Twitter, Facebook), and Just Giving pages – I would have had no idea how to do this! They managed these aspects throughout.

Was it a success?

Initially I set targets of £1K for each charity, but raised the targets as we reached them and ultimately achieved double the initial target overall. Financially the walk was definitely a success and I am grateful to, and heartened by all who donated.

We look forward to hearing more from Rob as he continues to reflect on his experiences in future blogs.