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The Last Post From Me

The Last Post on CFS/ME: Sofa Heroes

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 Last Post on CFS/ME

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.

CFS/ME Beaded Cupcake Fundraiser, Katie Dean, Beadflowers

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!

Jennifer Brea CFS/Me TED Talk

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.

CFS/ME Beaded Cupcake Fundraiser, Katie Dean, Beadflowers

*If the last post does its job, then those numbers should change. So, click here to see how it’s going now.

6 thoughts on “The Last Post From Me

  1. Dear Katie

    I have a great deal of sympathy with people suffering from ME. When I worked in Public Health in the South West of England I was asked to assess the treatments available and the diagnostic approaches to the condition. My conclusion then (around 1990) was that diagnosis was by exclusion of other conditions – always an unsatisfactory method – and no real treatment was available.

    I am not sure that much has changed since then.

    I have met several people with ME and know this is a real condition. I am sympathetic to your cause and realise that one of the main problems with care is that complementary therapies are still viewed with suspicion by most medical practitioners. I spent 15 years living and working in developing countries and realise that our conventional therapies are not the only way to proceed.

    However, my specialisation was in epidemiology and statistics and for much of my career I was involved in the planning and assessment of research projects. Unfortunately, not all research projects are acceptable in their methodology. I am reluctant to contribute to ANY research project without, at least outline, information on the aims and objectives and methodology.

    I have made a similar comment to others asking for contributions to fund research projects -including my alma mater, Edinburgh University and the Stroke Society.

    I do not feel able to contribute without further information. I realise that research in non-NHS institutions has particular problems but I do realise that complementary medicine may provide solutions to currently unsolvable problems

    Good luck and best wishes

    Yours sincerely,

    Elizabeth White,M.D.,MFPH,DPH, DCH

    1. Dear Dr White,
      I’m so sorry I am a little late in responding to this. I have just replied to your other comment, including the link to the detailed information about the trial (just re-posting that here, for anyone else reading this: I just wanted to say thank you very much for taking the time to share your thoughts. I absolutely agree with you and would not be asking people to contribute to a trial that I thought was in any way ‘suspicious’. I do understand that worthwhile trials need to take a stringent approach or the results are meaningless and that helps nobody. It is lovely to hear your open-minded approach and it would be great to imagine a future where there is more co-operation between NHS and complementary approaches as both can offer a lot. So thank you.

  2. Hi Katie, i think too, every drop in the ocean helps. I think it is nothing wrong about it to take it or make it personal, because it can be and it is. Maybe just push the failing feeling away again if you get it again, because you are helping in every way you can, doing the fund-raising and trying to inform people about it and the illness.
    Maybe is it possible to let the fund-raiser run a bit longer or do it again at some point, after a break time? I will donate again too as soon as i can. If you can’t do it again, i will go directly to the clinics fund-raiser. Maybe you could keep a link visible on your website visible for visitors?

    1. Thank you so much! I will certainly make sure that the links remain visible to go through to the main fundraising site and allow people to keep donating beyond the end of November. Thank you for your support and kind words.
      Katie x

  3. I saw the clinic has a time limit/countdown for the fundraising too (31 days remaining). That is just the options they have choosen on the Justgiving fund-raising company, right? Does the clinic carry on with the fund-raising?

    1. Yes – that’s right. I also saw that and checked with the clinic. So, they are also talking with private donors and will make sure that this trial goes ahead. They’ve already invested a lot in setting it up and getting the right protocols in place to make sure that the results are relevant. It is a randomised control trial. I will keep you all updated as the trial gets underway and we find out how it’s going. Thank you for your support!

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