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.
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…
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Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.
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