by Sasha The charity Invest in ME’s plans for a UK Rituximab trial got a substantial boost at the end of July when Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine at University College London (UCL), agreed to act as their advisor for the study. ‘No UK expert is better placed than Professor Edwards to advise us on setting up
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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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Professor Stephen Holgate says ME/CFS is a spectrum of disorders that need to be understood through new approaches, and patients must be partners in research. Simon McGrath reports. ME/CFS probably isn’t one disease, or even a few different ones – but could be as many as fifteen. So said Professor Stephen Holgate, Chair of the UK Research Collaborative (CMRC), when
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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 invites readers to join 11 organizations and 31 advocates and write to the CDC, asking them to include appropriate medical tests in their multi-site study. The historical approach of the US Centers for Disease Control and Prevention (CDC) to the study of ME/CFS has not been universally well-received – and that’s an understatement. The majority opinion of the
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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 Imagine that you’ve just been put in charge of the world’s ME/CFS research – yes, you – and you’ve got to decide what research you want. Come on, hurry up! Erm, erm, erm… oh yes, well, of course, as a patient you want something that’s going to get practical benefit for you in the shortest time possible. You’ve
ContinueGabby (Nielk) and Russell (Firestormm) continue our summary of the FDA Workshop with a look at the first part of Day Two – a discussion entitled “Innovation, Expedited Pathways, and Regulatory Considerations” The FDA Drug Development Workshop for Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (ME) took place on the 25th and 26th of April 2013. It was well attended
Continueby Mark On June 12, twelve ME/CFS organizations (including Phoenix Rising) and twenty-three advocates wrote to William B. Schultz, General Counsel of Department of Health and Human Services (DHHS), calling for an immediate investigation into the alleged intimidation of three voting members of the CFS Advisory Committee (CFSAC). Enclosed with the letter to Schultz was a transcript by Joe Landson
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On May 12th, 9 ME patient organizations (including Phoenix Rising) and 26 advocates sent a letter to Secretary Sibelius, Dr. Howard Koh, Dr. Thomas Frieden and Dr. Francis Collins at the Department of Health and Human Services (DHHS). In that letter, we expressed our strong concerns about the department’s current definition activities related to “CFS” and called on them to
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