by Charlotte Dyer In May 2005 I met my future husband. Living 200 miles apart we led a hectic life rushing between work and family and meeting each other at the weekends for 48 hours before starting all over again. Joel’s job was particularly demanding, meaning he often had to work until the early hours of the morning, snatching a
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by Sasha On June 6, the Norwegian Medical Research Council agreed to give a large enough grant to the Haukeland Rituximab trial for the study to begin. Later that day, the charity Invest in ME announced that they were initiating a UK Rituximab trial. It seemed to come out of nowhere. There were no details – cost, size, location, research
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Mark Berry introduces Dr Neil Coulson and Anna Maddison from the University of Nottingham, and their new 2-part research project with Phoenix Rising The most rewarding part of my work with Phoenix Rising is meeting people who tell me that treatment information they have found on our forums has dramatically changed their lives and their health, or that the forums
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by Sasha Amazon.com, Inc.: it’s huge! It’s the biggest online retailer in the world and, weirdly, we can easily divert some of its mighty river of money into Phoenix Rising’s coffers. For free! Free, my friends! First I’m going to tell you how to do it and then I’m going to tell you why. How to make Amazon give Phoenix
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by Sasha After pushing so hard for so many of our organizations in these online voting contests, it’s refreshing to ask you to vote for us this time! Both Phoenix Rising and PANDORA are in the Bogs (lovely name) Footwear contest in which the top two charities will each win $2,500 (£1,700, €1,900), and we can all vote for both.
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by Sasha 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
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by Simon McGrath The new UK CFS/ME Research Collaborative has had its first meeting and it very much looks like it means business. They have plans to rev up the research agenda and raise funds – and they have key players on board too. The Players The CMRC is chaired by Stephen Holgate, MRC professor of Immunopharmacology at Southampton, with
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Mark Berry reports from London on the 8th Invest in ME International ME Conference. This was only my second year at the Invest in ME conference, but already I feel right at home! The presentations you’re about to read about are only half the story; the opportunity to mingle and network with a family (yes it really does feel like
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by Sasha Probably the easiest money we’ll ever raise is up for grabs in an online voting contest in which UK research charity Invest in ME is a frontrunner. Anyone can vote, from anywhere in the world, and you vote just once, but you need a Google or Facebook account to do so (or to be willing to spring for
Continueby Sasha The internet! Full of lovely free stuff. Until recently, we expected to get our news, expert advice, gossip – pretty much everything on the web – without paying. Some content providers write for fun and don’t seek payment, but others need an income from their work. They get that via click-through advertising or because their content is advertising
ContinueThe Phoenix Rising board members are all extremely sad to learn of Cort Johnson’s decision to leave Phoenix Rising. Cort’s writing, and his vision of a rich and reliable website as a resource for ME/CFS patients, are what attracted all of us to volunteer for Phoenix Rising, and the board is determined to maintain the aims and principles of the
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Posted by Cort Johnson The CFIDS Association of America (CAA) released a list $2 million dollars worth of new CAA funded studies last week. There’s something of a ‘gestalt’ to a CAA study; the CAA likes to fund studies that gather enormous amounts of information and then use data mining techniques to ferret out new patterns, they like to ‘smush’ researchers
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