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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This is an extended version of an article originally published on ProHealth as “An Interview With Julia Newton, Founding Member of Newly Launched CFS/ME Research Collaborative.”By Clark Ellis Dr. Julia Newton is one of the founding members of the recently launched UK CFS/ME Research Collaborative (UK CMRC), a new initiative aimed at expanding medical studies into ME/CFS by bringing together
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Joel asks a variety of leading doctors, researchers and patient advocates for their reflections on the FDA Drug Development Workshop. A short while ago, the US Food and Drug Administration (FDA) held a workshop for patients, doctors, and other stakeholders, to talk about drug development for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). You can read a summary of the first and
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On May 12 – International Awareness Day for ME/CFS/FM/MCS/etc – Phoenix Rising joined with 8 other US ME/CFS patient organizations and 26 independent patient advocates to call on the Department of Health and Human Services (DHHS) to finally fix the problem of the many and diverse case definitions associated with our disease. In a letter to Secretary Sebelius, Dr Howard
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Gabby (Nielk) continues our summary of the FDA Workshop with a look at the second half of Day One – a discussion entitled “Patients’ Perspective on Treatment Approaches” 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 by patients, advocates, doctors,
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by Joel (snowathlete) and Gabby (Nielk) The FDA Drug Development Workshop for chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME) took place last week on the 25th and 26th of April. It was well attended by patients, advocates, doctors, representatives of the CDC and even a few pharmaceutical reps. The workshop was also broadcast live over the internet, enabling many
Continue by Simon McGrath Last Monday, 22 April, saw the launch of the new UK Chronic Fatigue Syndrome/Myalgic Encephalitis Research Collaborative (CMRC). Set up by Stephen Holgate, MRC professor of immunology, and backed by the UK’s main research funders (MRC, Wellcome Trust and NIHR) it aims “to create a step change in the amount and quality of research into chronic fatigue
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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
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Jody Smith continues her review of INIM’s Patient Conference with a look at Dr Irma Rey’s presentation. In the fourth video of the Institute for Neuro Immune Medicine’s Patient Conference in January, Dr. Klimas introduced Dr. Irma Rey, Assistant Professor of Medicine, of the Department of Clinical Immunology. Dr. Rey is also Director of Medical Education, Nova Southeastern University, College
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As the FDA Stakeholder Meeting approaches, we explore the various ways that patients can get involved – and offer some suggestions on how to make the most of this unprecedented opportunity. On April 25-26, 2013, the United States Food and Drug Administration (FDA) is holding a workshop in Bethesda, MD to discuss how best to facilitate and expedite the development
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