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Saturday, 23 June 2018

Fit For Purpose?

Hi Guys,

On day one of ME Foggy Dog way back in 2014, the original plan was to raise research funding and awareness of M.E. The plan was to enlighten people in the wider non-M.E community about the illness itself and the politics surrounding it. I strongly believe that we need these people to understand our illness, even if only at a basic level, so we can progress and battle the stigma. However, I am wondering if I am achieving that and pondering whether ME Foggy Dog is fit for purpose.

We aren't fit for purpose as a fundraiser. We have made in 4 years what we had got very close to reaching in year one. Some people raise £10k simply by doing one fundraiser, perhaps an event or marathon. We have raised just over £10k by doing 4 years of blooming hard work every single day..... yep...every single day. Whether that's creating content on social media, organising Foggy's travel plans (very often a logistical challenge and stressful) , promoting M.E in the media, talking to University researchers about the possibility of them putting their efforts into ME research, networking with University lecturers, and more recently networking with business people about future plans. Team Foggy will not be fundraising again, I find it harmful to my self-esteem and I don't like repeatedly banging my head against a brick wall. I will be dipping my toe into crowdfunding and profits from sales of future products/ticket sales will go to research funding instead.

Let me be clear, I have never expected funds to come from the M.E community. I am not dumb, I know you guys often do not have the cash to spare. However, it has become clear to me that that is exactly where the cash is coming from. Either sufferers themselves or their wider family/friends. This upsets me. This is why I try to get non-M.E peeps to engage with our cause. They have the money to spare but simply don't know what they are donating for....very often they don't think of M.E as a worthwhile cause because they don't know enough about it. That's where awareness raising comes in.

I LOVE the M.E community, specifically those of you who contact me direct, share everything I do and have fully engaged with Foggy. I know you guys think I am raising awareness and I am very grateful for your love, support, and enthusiasm. However, it is noticeable to me that my posts aren't shared by non-M.E peeps. I include family, friends and support networks in the M.E peeps category. I'm talking about people who have no personal contact with M.E, who didn't know anything about M.E before following Foggy. If I'm wrong and you are a non-M.E peep, please do let me know whether my awareness raising is working! In 4 years, I have never received an email/message from someone who has discovered M.E due to Foggy's work online.

People I meet in the real world are now enlightened. I know for a fact that I have raised awareness among business people I meet who had no prior knowledge of the illness or our fight for recognition. Attendees of my public speaking events are also aware and have a greater understanding of how to support members of the M.E community within their working environment.

There is absolutely no point in raising awareness within the ME community. We are all 100% aware of how rubbish our illness is. We might learn about other people's variation of the illness or about a new symptom that we hadn't yet recognised as part of our own M.E. But you don't need me to tell you about your own illness. ME Foggy Dog is sometimes just an information sharing platform, completely not what it was set up to be. There are other organisations that do that very effectively so ME Foggy Dog isn't needed in that format.

I am currently driving myself nuts trying to work out what to do with ME Foggy Dog in the years to come, or whether he should continue at all. Should I just close everything down and get some of my life back? My life is not only restricted by my own M.E but also by the pressure of doing at least 2 hours of 'Foggy work' every day. This work often uses up the tiny bit of spare energy I had, which would be ok if I felt I was achieving anything.

I have recently been to networking events and workshops with business people to try and get my ideas a bit more structure. I have had the pleasure of meeting some very enthusiastic business people who want to get involved. Some of the ideas that have been enthusiastically discussed have included concerts, books, range of teddies. and HUGE awareness events. All of which would reach non-M.E peeps as well as the M.E community. Whatever happens next, Foggy is going to get BIGGER. His adventures will continue but the other stuff will be done purposefully and determinedly to get the wider general public engaged. If there are any celebs out there (you don't necessarily have to have M.E!) who want to get involved and help us to grow please get in touch. We need a bit of star dust to get noticed.

There are now 10 days to go, I can't wait to put my feet up for a bit! (I'm still doing local events though so maybe not as much of a rest as I need!)

Love,

Sally
(and Foggy OBVIOUSLY)
XXX

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