This is going to be the last post from me in this series. And it’s not because I’ve run out of things to say. The fact is, I’ve barely touched the surface when it comes to talking about CFS/ME.
In case you’re wondering about the ‘random’ image there, let me explain. It is actually the symbol for the clinic’s campaign which they’re calling ‘Sofa Heroes’. So, this is about asking CFS/ME patients and the clinic’s own practitioners to raise the money required to carry out a clinical trial of a treatment for CFS/ME.
My ‘November beading project‘ is a tiny part of that campaign. The patients taking part are literally raising money from their sick bed or sofa.
So, let me throw a question out there: is it right that individuals should be asking their friends and family to pay for medical research into an illness that is estimated to impact 2.8% of the world’s population?
Yet, that is what we’re having to do because nobody will listen…or that’s how it feels. Let me tell you why…
The two things I’ve realised this month
Most people really don’t care.
Writing about this is emotionally exhausting for me. I feel my time, and the little energy I have, would be better poured into beading. (I’ve got one cracking beading project almost finished and a second one that I can’t wait to start…)
Let me elaborate…
The depressing statistic I’m looking at this morning is this:
I launched my fundraiser in a newsletter that went out to 1700 people…
…and on a blog that was put in front of a few thousand followers across all my social media.
I’ve posted another four blogs, all of which were promoted to those few thousand followers.
So, out of those five thousand or so, guess how many people have contributed to the campaign?
44* totally amazing and wonderful people. And between them, they’ve raised 48%* of my target. Every single one of you is amazing. Your comments have made me smile and made me cry (in a good way!). If you are reading this – THANK YOU!
But isn’t that also rather depressing?…I mean, less than 1%…
I’m sure I’m wrong to take this personally, but I am increasingly feeling like I am failing here. Have I made such a bad job of explaining why this matters? Or is my cupcake just a totally ridiculous idea? With just ten days to go, my hopes of reaching my target are fading fast.
This month has been really eye-opening. I have a new respect for anyone who works for charity…!
Why this feels personal
So, here’s my logic. If I have a problem, but I don’t tell anyone about it and I don’t ask for help, it isn’t surprising that people don’t help.
What if I have a problem and I explain it as clearly as a I can to as many people as possible. I then outline something that I think would help solve the problem. Finally, I ask those people to take a specific action and that action is simple to do. Am I right to conclude that the people who ignore this don’t care?
This illness already makes me feel invisible. I don’t know how to explain it. Many people make fun of it or judge me as either neurotic or lazy. So, it is easiest to try and pretend it’s not happening, just sharing what I am really experiencing with my very nearest and dearest and focusing on the people who do support and understand.
Choosing to speak out about anything makes an individual feel vulnerable.
The last post, the last attempt…
So, let’s assume I’m doing a really bad job at communicating here.
In that case, let me use the last post to hand over to someone far more eloquent. Please click here to watch this short video – it opens in a new window and I hope it will motivate you to return here and help. I’ve got reach my target by 30th November 2017!
The Last Post Statistics
The Optimum Health Clinic needs £50,000 for this clinical trial to go ahead. Most charity fund-raisers break that down to show where your money is going. This is no exception, but the numbers are big. So, you might be used to seeing ‘£5 will vaccinate a child for life’ or something similar. This is a bit different.
- £100 will pay for supplements for one month
- £390 will provide medical screening (tests) for one patient
- £565 will pay for the ’90-Day Program’
So, as I write this, those 44* amazing people have funded tests and one month’s supplements for an individual who desperately needs help. I won’t know who that person is. That individual won’t know about any of you, but they will be incredibly grateful.
That’s why my target of £1,000 is such a drop in the ocean. It is also why we so desperately need the trial to go ahead. Ask yourself, how many people can afford this treatment? Is it fair that so many are left to flounder in the dark and suffer alone? We need it to be recognised and available with the support of bodies like the NHS.
So, over to you…please restore my faith in human nature.
*If the last post does its job, then those numbers should change. So, click here to see how it’s going now.