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$4,600 Up for Grabs for UK ME/CFS Charities – Vote Once from Anywhere!

by Sasha

Learn to vote

You know what to do…
Image from the Kheel Center, Cornell University

I’m writing this the morning after an unprecedented win for our community in an online voting competition. On 1 June, one of our charities, MEandYou, pulled in an astonishing 8,000 votes in only four days in the Stormberg contest. The highest previous level I can remember was less than half that and took several weeks to achieve.

MEandYou won that contest by 1,000 votes at midnight but earlier that afternoon, the opposition were only 14 votes behind.

That shows two things: your vote counts, because the margin can get very narrow; and, as a community, we have very large numbers and can smash these competitions if we come together. It just takes a mouse-click. Yours!

So let’s all get behind our next contest and bag that free money. We’re now into the fourth and final monthly round of the Big Break contest run by Direct Debit, a UK banking services company. Invest in ME entered April’s contest and with the ME/CFS community’s backing, took the top prize in a photo-finish with only 118 votes in it.

In the current contest, which runs until 30 June, we have two ME/CFS charities: ME Research UK and the ME Association. We want them to win the top two places and bag $4,600 (£3,000, €3,500) between them — $3,000 (£2,000, €2,300) for first place and $1,500 (£1,000, €1,200) for second.

You’ll need a Facebook or Google account to vote.

So, who are the charities?

ME Research UK (MERUK)

MERUK are research-driven: their goal is to fund biomedical research into ME/CFS to find its cause, develop effective treatments and find a cure. They’ve invested nearly $1.5 million (£1 million, €1.2 million) in 34 different biomedical projects.

Perhaps their most famous protégée is Professor Julia Newton of Newcastle University. Well-known for her work on orthostatic tolerance in ME/CFS, she recently made national news in The Times with exciting findings that muscle cells grown in the lab from biopsied tissue from ME patients produced 20 times as much acid as cells from sedentary controls when subjected to ‘exercise’ in the form of electrical impulses.

MERUK makes clever use of its funds as seed money for pilot studies, getting researchers to a point where they can pull in government funding. Professor Newton is a good example: her early studies were funded by MERUK and her team recently won a Medical Research Council (MRC) grant of $1.4 million (£900,000, €1.1 million) – over half the MRC’s annual spend on ME/CFS research.

MERUK collaborates with other ME/CFS research charities and is keen to support high-quality international research. They’ve also funded projects by Professor Jo Nijs in Belgium on cerebral blood flow and Professor Jonas Blomberg in Sweden on biomarkers and XMRV, as well as UK-based projects on everything from muscle bioenergetic abnormalities to lymphocyte phenotypes.

Not only that, but one of the charity’s patrons is our favourite aristocrat, the Countess of Mar.

ME Association (MEA)

The MEA also fund research, via their Ramsay Research Fund, and often co-fund research with MERUK and other charities, including Professor Newton’s work. One such collaboration is to set up a much-needed UK biobank, crucial to speeding up research. Their funded research includes studies on mitochondria, gene expression, the development of severe ME/CFS, and exercise-induced fatigue. They’re very much part of the UK research scene.

Importantly, they also campaign at a government and parliamentary level in relation to NHS services, State disability benefits and the need for more biomedical research. They work to inform specialists, GPs and nurses about the disease and question what is being done to provide assistance to patients. Both of these activities are critical in the UK, where there is a strong psychiatric lobby.

In addition, the MEA have a crucial role in providing information, support and practical advice for people, families and carers affected by ME/CFS, partly provided through a volunteer-run helpline. The MEA website has a daily news section and keeps a very necessary eye on media stories about ME/CFS. There is some very negative and pernicious coverage of ME/CFS in the UK and the MEA have had some success in providing a corrective, as in this interview with their medical advisor Dr Charles Shepherd in the Daily Telegraph.

And, although they haven’t got the Countess of Mar among their patrons, they’ve got royalty, in the personage of HRH the Duke of Kent!

Let’s get voting!

So, now that we’ve become a human tidal wave of voters, let’s win this one. It’s quick, it’s easy, it’s free money and you can vote from anywhere in the world. You just vote once for each charity and that’s it.

To vote:

1. Log into your Facebook or Google account.
2. Go here to ME Research UK’s voting page.
3. Scroll down a bit and hit the big red button at the bottom right that says, ‘Vote for this cause’.
4. Click on ‘Log in with Facebook’ or ‘Log in with Google’.
5. If you used Facebook, now choose ‘OK’ or ‘Skip’, depending on whether you’d like the Big Break to post to your friends on your behalf: if you used Google, you won’t see this choice.
6. You’ve voted! Now do it again for the ME Association by going here.

Only one vote for each charity is allowed from each IP address, which means that you can only get one vote per internet connection in your house.

You can keep an eye on how we’re doing by going to this page and clicking on the ‘Rank’ sort-order button.

And let’s try an experiment…

According to our statistics, a lot of visitors to Phoenix Rising don’t use features such as the ‘What’s New’ button on the forums that make it easy to see what everybody’s currently talking about and often won’t realise that there’s a contest that they could join in with.

So let’s try a new strategy to spread the word: let’s mass-copy my signature! When you create a signature for yourself, it instantly appears at the bottom of every post you’ve ever written and it’s a great way of spreading a message across the boards, but we haven’t yet tried to use it in a concerted way.

It’s easy to do. Here’s the text of my signature:

Win $4,600 for two UK ME/CFS research charities!
Needs Facebook or Google
Vote once, from anywhere until 30 June
Vote for ME Research UK: http://tinyurl.com/lq6buhh
Vote for the ME Association: http://tinyurl.com/kc6uwvt

To copy the signature:

1. First, copy the text of my signature as you would in a normal document by highlighting it, right-clicking your mouse and choosing ‘Copy’.
2. Go to the bar at the top of the screen where the ‘Log in’/’Log out’ tab is and you’ll see your username. Click on it to get the drop-down menu and choose ‘Signature’ (told you it was easy!).
3. Paste the text of my signature into the box. It will lose its formatting but the main thing is the message! If you want to format it with the tools there, you can – stick some balloons on it, why not – or you can just click on ‘Save’ straight away. Done!

Free money, just waiting for us

Voting in online contests such as these has already raised over $400,000 (£260,000, €310,000) for our charities. That’s an amazing figure. This money is there for the taking and we’re a big enough community to win every contest, if only we take the effort and vote.

So vote! And don’t forget to tell your friends…

Remember that Phoenix Rising costs money to run and needs your donations to support it. Please hit the button below and donate!

 

[appeal]?

 

{ 64 comments… add one }

  • Firestormm June 13, 2013, 1:42 pm

    I am rather amazed that so little voting has yet to take place. I mean when you think about it it doesn't take any effort on our part to hit a button or two – and with 1,000 votes the contest would be turned on it's head.

    ME Research UK in 5th place with 646 votes

    ME Association in 11th place with 423 votes

    You can access the rankings here. Come on. Hit the button. Vote. Tell your friends. And don't forget that you can vote from outside of the UK :)

  • Tom Kindlon June 14, 2013, 9:06 pm
    Tom Kindlon

    Wendy Boutilier has a file which records the scores. She's in North America so times are around 6.30pm in the British Isles (i.e. add 5 hours)
    e.g.
    1:40 PM EST June 6th, 2013,
    June 7th, 2013: She didn't note exact time but looks like around 1.30pm from when she posted it
    As at 1:45 PM EST, June 8th, 2013,
    As at 1:25 PM EST June 9th, 2013
    AS AT 1.30 PM EST June 10th, 2013
    AT 1:30 PM EST JUNE 11th, 2013.

    So Sasha's article produced a bit of a bounce as did my attempt to highlight it around on evening of June 9. But unfortunately has gone a bit flat again in the last 24 hours.

    Here are the latest ratings from just over an hour ago which show the change from day to day.

    Wendy Boutilier uploaded a new version of june direct debit.xls

    TOP 12 – JUNE 14th, 2013 @ 3:44 PM EST.

    ME Research UK sent out an e-newsletter today and plugged the competition but there was little sign of much of a bounce from it (20 votes in 26 hours 24 minutes). They are now in 6th. The MEA have dropped out of top 10 (prize-winning positions) to 12th. Only 11 votes in 26 hours 24 minutes.

  • Sasha June 14, 2013, 9:35 pm
    Tom Kindlon

    ME Research UK sent out an e-newsletter today and plugged the competition but there was little sign of much of a bounce from it (20 votes in 26 hours 24 minutes).

    Interesting – I believe they've got a lot of members but they don't themselves seem to be very Facebooked-up, which might be an issue for this competition. Did they mention any of the reasons to think it worth voting, such as the fact that the community has won $400k in these contests? I think the UK charities are very new to this and their members might not realise quite how good their chances are if they actually crack on and vote.

    We're so used to talking about these contests on Phoenix Rising now and so used to seeing the community in action that we perhaps don't realise that not everybody is aware of how well we've all been doing on this. It took a while for our voting community to build and maybe the UK charities have to start from further back – with IiME only doing well because it's well-known because of the conference and the more public focus on Rituximab and hence picked up the international vote.

    Either that or everybody's on holiday! :)

  • Esther12 June 14, 2013, 10:20 pm
    Sasha

    I think the UK charities are very new to this and their members might not realise quite how good their chances are if they actually crack on and vote.

    I wonder if there's also a bit of British hesitancy to it. I think that US organisations would be far more willing to work on geeing people up, and going on and on about it. UK organisations might be more likely to feel 'we've told them about it… it would be rude to keep mentioning it if they do not want to vote for us'. (I could be 100% wrong about this).

  • Bob June 14, 2013, 10:20 pm
    Tom Kindlon

    Here are the latest ratings from just over an hour ago which show the change from day to day.

    Interesting to analyse the results, to see where all the votes come from. It might help us with future campaigns.

    Tom Kindlon

    ME Research UK sent out an e-newsletter today and plugged the competition but there was little sign of much of a bounce from it (20 votes in 26 hours 24 minutes).

    Sasha

    Did they mention any of the reasons to think it worth voting, such as the fact that the community has won $400k in these contests?

    It's a very concise newsletter, and they only briefly mentioned the competition:

    2. Vote to give us a 'Big Break'!
    ME Research UK has the chance of winning up to £2,000 BUT we need to win a public vote. Please cast your vote for us. Voting ends 30th June so get all your family, friends and colleagues involved!

  • Tom Kindlon June 14, 2013, 10:26 pm
    Esther12

    I wonder if there's also a bit of British hesitancy to it. I think that US organisations would be far more willing to work on geeing people up, and going on and on about it. UK organisations might be more likely to feel 'we've told them about it… it would be rude to keep mentioning it if they do not want to vote for us'. (I could be 100% wrong about this).

    Just did a quick count: the MEA have tweeted/RTed 9 messages on this since the start of the month to their 3800+ followers. I think that's a reasonable amount – much more might be considered excessive.

  • Tom Kindlon June 14, 2013, 10:30 pm

    If I remember correctly, Facebook events have been set up to plug competitions. It's another excuse to highlight it and one can easily invite people to vote.

    I've a bundle of work to work through and spent quite a bit of time this week plugging something else on Facebook and e-mail lists (Blue Ribbon documentary) so don't feel inclined to do it myself.

  • Sasha June 15, 2013, 8:50 am
    Esther12

    I wonder if there's also a bit of British hesitancy to it. I think that US organisations would be far more willing to work on geeing people up, and going on and on about it. UK organisations might be more likely to feel 'we've told them about it… it would be rude to keep mentioning it if they do not want to vote for us'. (I could be 100% wrong about this).

    Our upper lip's too stiff! :aghhh:

  • Sasha June 15, 2013, 8:55 am
    Tom Kindlon

    Just did a quick count: the MEA have tweeted/RTed 9 messages on this since the start of the month to their 3800+ followers. I think that's a reasonable amount – much more might be considered excessive.

    I wonder what the crossover is between Tweet membership and FB membership.

    The MEA have had it on their FB page. I haven't got a clue about FB. Is there a mechanism for sending a FB message to all the people who like you or are your friends or whatever (I don't know the difference!)?

    They've also recently posted it in the news section of their main website – I wonder if that did anything?

    Interesting feedback to give to the charities, actually – our fundraising network probably sends an alert out to more or less the same people every time but the charities themselves have a large membership and have the opportunity to do various things to get people voting.

  • Sasha June 15, 2013, 8:57 am
    Tom Kindlon

    If I remember correctly, Facebook events have been set up to plug competitions. It's another excuse to highlight it and one can easily invite people to vote.

    I've a bundle of work to work through and spent quite a bit of time this week plugging something else on Facebook and e-mail lists (Blue Ribbon documentary) so don't feel inclined to do it myself.

    Can you broadcast out somehow about your event on FB – to all those 'like' people maybe?

    Fair enough on your priorities – that Blue Ribbon thing looks great. I've got a thread on it:

    http://forums.phoenixrising.me/inde…r-excellent-us-me-cfs-documentary-film.23689/

  • Tom Kindlon June 15, 2013, 12:40 pm
    Sasha

    Can you broadcast out somehow about your event on FB – to all those 'like' people maybe?

    If people click they're going to events, one can then send them updates (I think they also get them if they click "maybe"). It's particularly useful to remind people for daily voting contests.

    Sasha

    Fair enough on your priorities – that Blue Ribbon thing looks great. I've got a thread on it:

    http://forums.phoenixrising.me/inde…r-excellent-us-me-cfs-documentary-film.23689/

    Good.

  • Sasha July 4, 2013, 10:05 am

    Looks like the competition closed out with ME Research UK in the top ten so that's £250 – well done to all who voted! :balloons:

    MERUK and the MEA of course were two of the charities whose proposal just bagged £1 million from the NIH for a UK ME biobank – that's the kind of stuff they're involved in so well worth supporting.

  • Bob July 4, 2013, 4:11 pm

    The June winners are listed here, at the bottom of page:
    https://www.directdebit.co.uk/TheBigBreak/100GoodCauses/Pages/Monthlywinners.aspx

    Like Sasha says, ME Research UK are 'runners up' and will receive some money.

    I think it was an excellent community effort, everybody. We can't be the top competition winner every time.

  • Sasha July 4, 2013, 4:47 pm
    Bob

    We can't be the top competition winner every time.

    Well, actually… we can be! 😎

    Seriously, thanks largely to the fundraising group, we've built up over the last few years enough of a network to be able to win almost everything we enter, if only people bother to vote. I think there's an element of self-belief in this – I don't know that everyone has really caught onto the scale of support that we can now draw upon that's there to be joined in with.

    Chase and Aviva – the big-prize contests – haven't been announced for this year but if they run, we'll be hoping to do well…