I was struck by a thunderbolt about a week ago, or at least that’s what it felt like and I’ll admit that it caused me to be a little bit upset. What am I waffling on about? I have been raising funds for Cure ME/MECFS biobank with fundraising and business activities with ME Foggy Dog and Stripy Lightbulb CIC since 2018 and in that time not one…NOT ONE…person living with M.E has said ‘Sally, I don’t know who or what Cure ME is’. I have been ‘getting on with it’ assuming that everyone who was engaging with Foggy and I knew what our business objectives and core objectives were (to bring about social change for patients AND fund biomedical research with Cure ME). The thunderbolt told me I had been wrong, very wrong.
The thunderbolt – AKA I asked Foggy’s Followers on all of Foggy’s social media channels (not advocates who know due to ‘work’ reasons) what they thought Cure ME/MECFS biobank was. I made a point of saying that if they didn’t know they should comment and say ‘I don’t know’. Of over 100 replies on 4 social media channels, two people had a rough idea what Cure ME is. TWO. Everyone else replied ‘I don’t know’.
I can’t compute how that can be the case, it feels like much of the past 4 years has wasted quite a bit of my energy, and in this blog I will explain why.
I have posted thousands of posted in which I have talked about or tagged Cure ME (@MECFS biobank), again, not once has anyone asked what Cure ME is. Cure ME is also mentioned on Foggy’s website mefoggydog.org in various places.
Here are just some of the instances that I have blogged, podcasted, vlogged about Cure ME and each and every time I have had good engagement with these posts.
Caroline Kingdon/Cure ME – Video for M.E Awareness Week 2021. – in which I asked Caroline to explain what Cure ME does.
Foggy’s P.A’s Interview With Jack From Cure ME Jack talked extensively about the work Cure ME does.
Future Plans With Stripy Lightbulb CIC – Blog about the day I visited the Cure ME office and met the team ‘in person.
The reason I thought all people with M.E knew what Cure ME was and knew about the work they do is because…….it’s where money goes when the big UK national charities say they are raising money for biomedical research. People with M.E are always saying we desperately need biomedical research. Cure ME do and enable biomedical research internationally so why do people with M.E not know who they are?! National charities not only give grants to researchers for biomedical research, they give money to Cure ME because without them there are no human tissue/blood samples for researchers to use. National charities fund Cure ME/MECFS biobank. So in turn….people living with M.E fund Cure ME/MECFS biobank…they just don’t realise it! As I said in my Instagram live last week, when I stopped fundraising for the ME Association I received an email from the Fundraising Manager Helen in which she said ‘You do realise that the money you raised for us went to Cure ME don’t you?’. She asked this because I had just announced that I was stopping fundraising for the ME Association and would be starting to raise cash for Cure ME. I knew where the fundraising money had gone, I had just decided to fundraise directly to Cure ME rather than through a third party. The JustGiving fundraising pages I promote during my campaigns link up directly to Cure ME so they get the cash in real time.
Ironically, if the reason donations aren’t flooding in at the moment is because people with M.E don’t know who Cure ME are, why do they donate to national charities if they don’t know who does the biomedical research? If I think about this too much I start thinking maybe MEeps don’t trust me in the same way that they trust national charities. So, I try not to think about that too much. I founded two third sector organisations in 2018 ( Foggy has been around since 2014 as a fundraiser), both are social enterprises, and both work for the benefit of the M.E patient community internationally and in the UK. I am as transparent as I can possibly be with everything that I do and can’t do any more to alleviate any trust issues that may be hovering.
Cure ME are not ‘customer facing’ and as such don’t have an effective social media presence, this is something I have talked with them about. It makes my fundraising much much harder to not have a visible online presence to bounce off. I didn’t realise it meant that patients don’t know who they are or what they do though. I like the fact that Cure ME don’t have loads of staff in their London School of Hygiene and Tropical Medicine office, in my mind that means more money is going to research rather than staff wages. But the lack of a steady and constant social media presence does make raising research funding harder.
In 2022, I am now having to raise awareness of M.E, raise awareness of what social enterprises are (not for profit businesses), and who Cure ME are….with half a functioning body and brain.
If you haven’t done so already, please donate and help Team Foggy to raise as much cash for Cure ME as possible.
Foggy is currently in Kew with Jack (formerly Project Manager at Cure ME). He’s been checking out the National Archives and Kew Gardens.
Lastly, thank you to Karen and Kat who have kept me going when fundraising hasn’t been working. You have both kept me going and I will be forever grateful for that. ‘Foggy’s A to Z Adventures Around the UK’ was Karen’s idea back in March – it’s YOUR fault hee hee. It’s actually been really nice to see bits of my country that I have never seen before. Smaller scale due to COVID19 but still ‘adventures’ and sightseeing for people who don’t live in the UK. Love and Foggy snogs x
Check out Foggy’s Facebook page to see all of the photos of this latest campaign (and every campaign since 2014) – Follow Foggy!
and Foggy (OBVIOUSLY)