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

June 7, 2013

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!

 

Support Phoenix Rising

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There are many ways you can help Phoenix Rising to continue its work. If you’re able to offer your time, we could really use some more writers, proof-readers, fundraisers, technicians…and we’d love to expand the board of directors. You can even donate significant sums, at no cost to yourself, as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.

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64 comments

{ 64 comments… read them below or add one }

Nielk June 7, 2013 at 10:54 am

Thank you Sasha for this article. We are on a roll. Let's keep the momentum going.

I have posted the links in my signature.

Sasha June 7, 2013 at 11:00 am


Nielk

Thank you Sasha for this article. We are on a roll. Let's keep the momentum going.

I have posted the links in my signature.

Thanks for voting! Yes, we're on a real winning streak – let's keep it up! :)

Nice balloons!

Bob June 7, 2013 at 12:34 pm

Great piece of work Sasha. :thumbsup:
Are we allowed to repost the text anywhere, if we post a link to this article?

BTW, I think you should post it on the MEA's and MERUK's facebook pages.
Or email it to them so they can post it on their own websites.
Or let someone know if you'd like someone else to do it for you. (I'd be happy to.)

Sasha June 7, 2013 at 12:47 pm


Bob

Great piece of work Sasha. :thumbsup:
Are we allowed to repost the text anywhere, if we post a link to this article?

BTW, I think you should post it on the MEA's and MERUK's facebook pages.
Or email it to them so they can post it on their own websites.
Or let someone know if you'd like someone else to do it for you. (I'd be happy to.)

Glad you like it Bob – thanks! :thumbsup:

Excellent question about reposting and I'm embarrassed to say I don't know the answer! Mark?

If Mark's happy with it, I'd be grateful if you would do those things you suggest – I'm a bit rubbish on the broadcasting front. Thank you! Let's see what he says.

snowathlete June 7, 2013 at 1:13 pm

Thanks Sasha. Really informative article – I didn't know some of that stuff!

And a very important cause.
The ME Association have done a lot to support the MEandYou campaign and achieving press coverage in the UK for the original Rituximab finding in Norway.
They are working toward helping to fund a second Rituximab study in the UK, or if necesary, elsewhere in the world too. So it really makes a lot of sense to vote for these two ME/CFS charities to win this free money!

I already voted, and stole your siggy. :)

Bob June 7, 2013 at 1:17 pm

Sasha, OK, I will broadcast it if Mark gives the go-ahead.
I'm sure that they will really appreciate what you've written about them.

BTW, I've done my signature! :hug:

Sasha June 7, 2013 at 1:49 pm


snowathlete

Thanks Sasha. Really informative article – I didn't know some of that stuff!

And a very important cause.
The ME Association have done a lot to support the MEandYou campaign and achieving press coverage in the UK for the original Rituximab finding in Norway.
They are working toward helping to fund a second Rituximab study in the UK, or if necesary, elsewhere in the world too. So it really makes a lot of sense to vote for these two ME/CFS charities to win this free money!

I already voted, and stole your siggy. :)

Good points – the MEA have been proactive in the past in seeking out researchers to work on particularly promising biomedical projects more than once, if memory serves. Both charities are big collaborators on biomedical research.

Glad you stole my siggy – I had a strange yen for boffins this time. :nerd:

Sasha June 7, 2013 at 1:50 pm


Bob

Sasha, OK, I will broadcast it if Mark gives the go-ahead.
I'm sure that they will really appreciate what you've written about them.

BTW, I've done my signature! :hug:

Thanks, Bob!

Nice signature! I like it that everybody's going for different icons. :nerd::nerd::nerd:

Sasha June 7, 2013 at 1:56 pm

Anyway, some stats:

1. Henry Hallam Appeal – 1,246
2. NCCA – 926
3. Rett Syndrome Research – 456
4. MERUK – 454
5. Pop'n'Grow – 326
6. Mountain Rescue – 309
7. Brompton Fountain – 304
8. MEA – 296

Very early days and all well within our reach. Let's grab that free money!

Sasha June 7, 2013 at 2:46 pm

OK, not that I've been hovering over it waiting for it to change or anything, but look who's moved up into third place:

1. Henry Hallam Appeal – 1,246
2. NCCA – 927
3. MERUK – 457
4. Rett Syndrome Research – 456
5. Reuben's Retreat – 350
6. Pop'n'Grow – 326
7. Mountain Rescue – 309
8. Brompton Fountain – 305
9. MEA – 297

Reuben's Retreat are suddenly out of nowhere, shoving the MEA down a place. Early days, though and even these top-ranked charities seem to be getting about a vote an hour, if that.

Highly winnable! :nerd:

Sasha June 8, 2013 at 12:38 am

Argh! Just realised that my signature, which I've been asking everyone to copy, doesn't mention that everyone has more than one vote! o_O

I've changed line 3 to: 'Vote once for both charities'.

The board this morning:

1. Henry Hallam Appeal – 1,250
2. NCCA – 938
3. Reuben's Retreat – 565
4. MERUK – 471
5. Rett Syndrome Research – 458
6. Pop'n'Grow – 328
7. Mountain Rescue – 312
8. Brompton Fountain – 309
9. MEA – 307

Apart from Reuben's Retreat, storming up the list, it's a tortoise race! :nerd:

Firestormm June 8, 2013 at 1:59 am

Nice job Lois – the Daily Planet would be proud! :) With efforts like this we might help improve the state of play: …every little helps :D

I actually hadn't realised I could vote for both charities :oops: and I've been aware of this campaign from the start! How embarrassing. Still, better late than never…

Just also noticed that 20 runners-up get to share £2,000 – but then I was never very good at sharing – I always wanted to WIN!! Get voting – doesn't cost anything :)

Sasha June 8, 2013 at 2:19 am


Firestormm

Nice job Lois – the Daily Planet would be proud! :) With efforts like this we might help improve the state of play: …every little helps :D

I actually hadn't realised I could vote for both charities :oops: and I've been aware of this campaign from the start! How embarrassing. Still, better late than never…

Just also noticed that 20 runners-up get to share £2,000 – but then I was never very good at sharing – I always wanted to WIN!! Get voting – doesn't cost anything :)

Thanks, erm… Superman? :cool:

It's not often that we get to vote for more than one charity in one of these contests – I think a lot of people will be assuming the same thing! A bit of a problem.

This month, the £2,000 is being divided between 8 runners-up (it varies month to month) so that's £250 if we're in the top ten. But our ambitions are higher! Mwah hah hah hah hah!

Living Dead June 8, 2013 at 3:16 am

For once there are several worth causes, this makes me happy. It's better to lose to a worthy cause than something silly. Although I'll spread the link to vote, it's better to win anyways.

Sasha June 8, 2013 at 3:53 am


Living Dead

For once there are several worth causes, this makes me happy. It's better to lose to a worthy cause than something silly. Although I'll spread the link to vote, it's better to win anyways.

Yes, it's a nice change not to be up against a bunch of puppies and seeing them more favoured by society. :confused: There was even a charity for rescuing chickens in the last one, if memory serves. o_O

It's never any pleasure to beat another good charity – but we have a completely unmet medical need for a devasting, chronic disease that affects 17 million people worldwide and we would be very worthy winners. Let's go for it!

parvofighter June 8, 2013 at 4:50 am

Yeah! I love the guidance – VERY helpful Sasha! Seriously, thank you! I really benefited from it :)

VOTED!

Sasha June 8, 2013 at 4:55 am


parvofighter

Yeah! I love the guidance – VERY helpful Sasha! Seriously, thank you! I really benefited from it :)

VOTED!

You're welcome, and thanks for voting! :thumbsup:

Sasha June 8, 2013 at 8:31 am

Looks like we're on the move, with the MEA up one place:

1. Henry Hallam Appeal – 1,255 (+5)
2. NCCA – 965 (+27)
3. Reuben's Retreat – 615 (+50)
4. MERUK – 494 (+23)
5. Rett Syndrome Research – 458 (no change)
6. Farplace Animal Rescue – 346 (newcomer)
7. Pop'n'Grow – 331 (+3)
8. MEA – 321 (+14)

Remember, you can vote for both charities! Tell your friends and family! :thumbsup:

snowathlete June 8, 2013 at 12:29 pm

In the last 24 hours, we gained 49 votes for ME Research UK and 30 for the ME Association. Thats a good increase. Only one other charity got more than 30 in the same period NCCA UK (50).

Sasha June 8, 2013 at 12:53 pm


snowathlete

In the last 24 hours, we gained 49 votes for ME Research UK and 30 for the ME Association. Thats a good increase. Only one other charity got more than 30 in the same period NCCA UK (50).

I think Reuben's Retreat got more than 50 but the rest are almost going backwards. This is a very weird contest.

Sasha June 9, 2013 at 2:18 am

Bump! Eyeballs like sandpaper this morning so I'm not going to look at screen long enough to transfer the numbers but basically, our numbers are up a bit, MERUK has maintained 4th place and there's a bunfight, albeit among snails, to stay in the top ten to guarantee a £250 prize.

A lot of people are on holiday, methinks. Let's take advantage!

Voted yet? Told your friends? :)

Sasha June 9, 2013 at 8:30 am

There's a charity in the top ten now that supports squirrels.

Vote for our ME charities, my friends, and tell everyone you know! :nerd:

Valentijn June 9, 2013 at 8:55 am


Sasha

There's a charity in the top ten now that supports squirrels.

Vote for our ME charities, my friends, and tell everyone you know! :nerd:

We know what to do with squirrels … :cat:

Esther12 June 9, 2013 at 10:50 am

Thanks for publicising.

Sasha June 9, 2013 at 11:11 am


Esther12

Thanks for publicising.

You're welcome!

Thanks for doing a signature! :)

Dolphin June 9, 2013 at 11:14 am


Bob

Great piece of work Sasha. :thumbsup:
Are we allowed to repost the text anywhere, if we post a link to this article?

BTW, I think you should post it on the MEA's and MERUK's facebook pages.
Or email it to them so they can post it on their own websites.
Or let someone know if you'd like someone else to do it for you. (I'd be happy to.)

One can't post on the MERUK page.
Dr. Charles Shepherd posted on the MEA page.

I think posting the link and perhaps a few lines will suffice for most situations e.g. on Facebook.

snowathlete June 9, 2013 at 12:16 pm

We

Dolphin

One can't post on the MERUK page.
Dr. Charles Shepherd posted on the MEA page.

I think posting the link and perhaps a few lines will suffice for most situations e.g. on Facebook.

ll worth people posting on me cfs Facebook pages. It's a lot of work for one or two people but light work if everyone posts just once or twice somewhere.

Dolphin June 9, 2013 at 12:22 pm


snowathlete

We
ll worth people posting on me cfs Facebook pages. It's a lot of work for one or two people but light work if everyone posts just once or twice somewhere.

Also good if people like it if they see it anywhere (or of course RT on Twitter).

Firestormm June 9, 2013 at 10:06 pm

4th MERUK and 9th MEA this morrow. 20 days remaining… I think both organisations could probably do with more resources being invested in social media – but in the meantime: spread the word. The competition is strong.

Tom Kindlon June 10, 2013 at 6:55 am

I plugged the article and vote in lots of places yesterday. Unfortunately they haven't got the bounce in votes I had hoped for (the MEA has dropped one to 10th now, with MERUK unchanged at 4th).

Firestormm June 10, 2013 at 7:01 am


Tom Kindlon

I plugged the article and vote in lots of places yesterday. Unfortunately they haven't got the bounce in votes I had hoped for (the MEA has dropped one to 10th now, with MERUK unchanged at 4th).

Article here with Neil from ME Research UK. I posted in full on News section, but it might help to raise their profile if it's reposted around the place.

I'm not very proficient on the olde social networks outside of Facebook I'm afraid. There will be lessons to learn from this effort I think – for the charities I mean.

Might serve as a bit of a wake-up call. I know they can't resource everything they might like to – research and support have to come first – but there's a case to be made for this kind of thing…

Ok. I've run out of steam. Later :)

Sasha June 10, 2013 at 7:05 am


Tom Kindlon

I plugged the article and vote in lots of places yesterday. Unfortunately they haven't got the bounce in votes I had hoped for (the MEA has dropped one to 10th now, with MERUK unchanged at 4th).

Well done, Tom!

Tom Kindlon June 10, 2013 at 7:05 am


Firestormm

Article here with Neil from ME Research UK. I posted in full on News section, but it might help to raise their profile if it's reposted around the place.

I'm not very proficient on the olde social networks outside of Facebook I'm afraid. There will be lessons to learn from this effort I think – for the charities I mean.

Might serve as a bit of a wake-up call. I know they can't resource everything they might like to – research and support have to come first – but there's a case to be made for this kind of thing…

Ok. I've run out of steam. Later :)

Thanks.
The MEA actually have the biggest Twitter following (3801 currently) in the world I think of ME/CFS groups so not doing so badly there.

Sasha June 10, 2013 at 7:07 am


Tom Kindlon

Thanks.
The MEA actually have the biggest Twitter following (3801 currently) in the world I think of ME/CFS groups so not doing so badly there.

Have they tweeted it? If all of their Twitter followers voted, that would be them straight into first place and they'd probably stay there – last month's winning vote was 3,590.

Tom Kindlon June 10, 2013 at 7:38 am


Sasha

Have they tweeted it? If all of their Twitter followers voted, that would be them straight into first place and they'd probably stay there – last month's winning vote was 3,590.

They tweeted or retweeted a few messages. They've just retweeted my message saying I was disappointed that there weren't more votes after I highlighted it in lots of places yesterday. :)

Sasha June 10, 2013 at 9:01 am


Tom Kindlon

They tweeted or retweeted a few messages. They've just retweeted my message saying I was disappointed that there weren't more votes after I highlighted it in lots of places yesterday. :)

You're on Twitter? Would you like to tweet them my point about the numbers – that if just their Twitter followers voted for them, they'd win?

Tom Kindlon June 10, 2013 at 9:21 am


Sasha

You're on Twitter?

Yes, have been active for the last couple of years: https://twitter.com/TomKindlon

Sasha

Would you like to tweet them my point about the numbers – that if just their Twitter followers voted for them, they'd win?

Ok. Done.

Sasha June 10, 2013 at 9:24 am


Tom Kindlon

Yes, have been active for the last couple of years: https://twitter.com/TomKindlon
Ok. Done.

Thanks!

Nice hat, by the way!

Sasha June 10, 2013 at 9:28 am

MEA currently 10th place with 380 votes, by the way – let's see if they go up.

I see MERUK has 34 Twitter followers. :(

Still, if they all tweet it on – isn't that how social media work? :cool:

Tom Kindlon June 10, 2013 at 9:31 am


Sasha

MEA currently 10th place with 380 votes, by the way – let's see if they go up.

I see MERUK has 34 Twitter followers. :(

Still, if they all tweet it on – isn't that how social media work? :cool:

MERUK haven't tweeted yet on anything. They just set up the account to hold the address. They have just built up that following by some of us plugging the address (not sure they have done so themselves anywhere).

Tom Kindlon June 10, 2013 at 9:32 am


Sasha

Thanks!

Nice hat, by the way!

:) I wear lots of baseball caps largely to keep out overhead lights. Also, helps to keep me warm.

Esther12 June 10, 2013 at 9:42 am

I wonder if the length of the intro piece could mean some people are not voting? Maybe it would be good to have a simple intro that said something like:

You need to have a facebook or google account signed in. Click this LINK, click to 'vote', it will ask you to connect via facebook or google and that's okay. Then repeat with this LINK. Then you're done.

I find that sometimes I can click on things like this when feeling wiped, and give up/put it off if it's more than a simple couple of clicks (I am very lazy though).

Tom Kindlon June 10, 2013 at 10:11 am


Sasha

You're on Twitter? Would you like to tweet them my point about the numbers – that if just their Twitter followers voted for them, they'd win?

They just re-tweeted my tweet to their 3803* followers

* they got two followers more since early. I imagine there will soon be a word, if there isn't already, for envy of other people's Twitter following. :)

Sasha June 10, 2013 at 10:13 am


Tom Kindlon

They just re-tweeted my tweet to their 3803* followers

:thumbsup:

I imagine there will soon be a word, if there isn't already, for envy of other people's Twitter following. :)

Twenvy? Twealousy?

Sasha June 10, 2013 at 10:20 am


Tom Kindlon

They just re-tweeted my tweet to their 3803* followers

They've just gone up a couple of votes. Let's hope the other 3,801 catch on! :cool:

Battery Muncher June 10, 2013 at 10:29 am

Voted! Let's keep thje recent momentum going!

Sasha June 10, 2013 at 10:32 am


Battery Muncher

Voted! Let's keep thje recent momentum going!

Well done! Nice signature – angel, balloons, thumbs up – artistic! :thumbsup:

Battery Muncher June 10, 2013 at 2:41 pm

Since I voted there hasn't been much progress – ME research UK has only garnered another 9 votes (from 590—>599). It's still in 4th place, trailing Reuben's retreat in 3rd place (667). So we're 68 votes behind 3rd!

Meanwhile, MEA is still lagging quite far behind in 10th….

Tom Kindlon June 11, 2013 at 11:49 am


Tom Kindlon

I plugged the article and vote in lots of places yesterday. Unfortunately they haven't got the bounce in votes I had hoped for (the MEA has dropped one to 10th now, with MERUK unchanged at 4th).

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.

Battery Muncher June 12, 2013 at 8:23 am

We are disappointingly far behind right now (by something like 1,500 votes). Fortunately, as recent contests have shown, we have more than enough people to overcome this gap (for Stormberg, we managed almost 8000 votes). This is the last time this competition is running, so it's worth making the effort!

Has anyone told Maria Gjelde? Maybe we need more publicity…
Also, perhaps people think this is limited to the UK only or something…. but you can vote internationally too, and our international community is easily big enough to overcome this gap!

Firestormm June 13, 2013 at 7:42 am

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 at 3:06 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 at 3:35 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 at 4:20 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 at 4:20 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 at 4:26 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 at 4:30 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 at 2:50 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 at 2:55 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 at 2:57 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 at 6:40 am


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 at 4:05 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 at 10:11 am

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 at 10:47 am


Bob

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

Well, actually… we can be! :cool:

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…

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