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Where did the year go (I have no idea!) and what has happened?

Well, last year I started to raise money as part of the Just Four Quid campaign. I set up two JustGiving pages (see them here and here) and over the year i have raised £864.00 shared between ME Research UK and The Ramsay Research Fund. With the gift aid added this comes to a massive £1003.62!!  Not bad for a year’s work (with no marathons/bungee jumps undertaken, for obvious reasons) and double what i was aiming for (and I never thought i would even reach those targets). I am so grateful to everyone who has donated to my pages and I am sure that that substantial amount will really help the charities with their work.

The Just Four Quid campaign itself has raised £12,685 at the time of writing, which is way short of the target of a £million in the year, but certainly better than nothing. I wonder how many people it took to reach this target, seeing as if everyone of the estimated 250,000 people in the UK with ME/CFS gave £4 we would have reached the target. I assume it is a very small number who have raised a LOT more than £4, like me. Not that i often did it in the suggested way of saving stuff then donating part of the saving – i simply am too ill to do it that way. I have barely been into a shop, never mind been well enough to shop around, even online. The recent theme of staying in cheap hotels/hostels also is completely unrealistic when you are so ill and there are certain comforts required (not just desired) to make the stay even remotely possible! I wonder if that is why the campaign has not been more of a success; the ones who want to raise money the most are like me, struggling to cope with everyday life rather than having time/energy for extra stuff like the things suggested by Just Four Quid. That said, you have to have a target and the money raised will make a real difference, even if not quite what was hoped for! I really admire “Zonko” for keeping up the momentum and enthusiasm for the project and for raising what has been raised. I certainly would not have considered doing it without her.

Personally it has helped raised awareness and caught the attention of people (friends and family) who had not really engaged with my illness or been able to understand it previously, which is a huge step forward. I feel more comfortable with them now. I also have a sense that i have DONE SOMETHING this year, more than just writing about my experiences and talking to others with these conditions; which is important in mutual support and information sharing, but perhaps not raising much awareness outside the group. Supporting actual research is certainly a step forward, and one so valuable when so little funding is available. The pages are still live and will be for a few weeks, so please feel free to make any last-minute donations if you get the urge!

I did a lot of hard work blogging for ME Awareness Day 2009 – this year I am keeping it fairly simple with a post or two about Fibromyalgia. Looking at last year’s posts, I think they are saying much of what I would want to say again, so feel free to revisit, or read for the first time if you did not see them last year. I was most interested to look at my symptoms picture and to note that I may even have developed a few more this year! That is no small feat (I like to focus on my achievements!) but also I notice that some things have become less of an issue for me (barely any tinnitus this year! yeah!). So, swings and roundabouts…

ME/CFS Awareness

ME/CFS Awareness


February 2020
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