Filmmaker Jennifer Brea launches the Kickstarter campaign today with the trailer of her forthcoming documentary Canary in a Coal Mine – a film that will help change the face of ME. Interview and article by Russell Fleming (Firestormm). When did you first get sick and why did you decide to make a film? “It started with the worst flu of
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Aviva! Your vote can help fund a year of ME/FM awareness in Canada!
It will cost you nothing more than an online vote to help see the National ME/FM Action Network enter the second round of the Aviva community competition to win $100,000. Voting in this round closes 14th October and you can vote every single day until then – so please join us and cast your vote now! By Firestormm. Join us
ContinuePatients to DHHS: Cancel the IOM Contract!
Gabby (Nielk) reviews the shennanigans employed by the DHHS recently to try and blindside us with a new clinical definition for our disease; and explains how you can help stop them… International Call for Action: Your community needs you! Everyone: please email HHS today and every day till September 30th – see draft below US Citizens: please email your Congressional
ContinueLipkin finds biomarkers not bugs
The CDC PCOCA telephone broadcast on 10 September 2013, featured a lengthy presentation from Dr Ian Lipkin who revealed some stunning initial results from the study that is primarily hunting for pathogens in ME/CFS. Simon McGrath and Russell Fleming (Firestormm) review this exciting and possibly game-changing news… Read the full Lipkin Transcript: Here. Dr Ian Lipkin has been a human
ContinueTalking with CFSAC – Views from the other side of the table
Gabby (Nielk) looks at the background to The Chronic Fatigue Syndrome Advisory Committee (CFSAC) and interviews 5 members including the Chairman… “Any committee is only as good as the most knowledgeable, determined and vigorous person on it. There must be somebody who provides the flame.” Lady Bird Johnson The mission of the U.S. Department of Health and Human Services (HHS)
ContinueThe Open Medicine Institute: Big Plans and a Sense of Urgency
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
Continue“Intimidated, Frightened, Threatened with Eviction” – CFSAC Spring 2013, Day Two
Mark Berry looks back on the second day of a controversial CFS Advisory Committee Meeting The CFS Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services (HHS), through the Assistant Secretary for Health, on issues related to myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS). The committee meets twice a year, and the Spring 2013
Continue“The Bar Has Been Raised” – CFSAC Spring 2013, Day One
Mark Berry looks back on the first day of a controversial CFS Advisory Committee Meeting The CFS Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services (HHS), through the Assistant Secretary for Health, on issues related to myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS). The committee meets twice a year, and the Spring 2013
ContinueExperts Reflect on the FDA Stakeholder Meeting
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
ContinueFDA Drug Development Workshop: Part One
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
ContinueLaunch of inclusive UK CFS/ME Research Collaborative
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
ContinueSpanish HIV Experts Give Aid to ME/CFS
Joel (Snowathlete) talks with Dr Blanco, from IrsiCaixa, about the Spanish AIDS Research Institute‘s latest research on ME/CFS Back in 2009 when XMRV hit the headlines a number of groups around the world took an interest in ME/CFS for the first time. One of these groups was the AIDS Research Institute IrsiCaixa, in Spain. Then XMRV tripped itself up and ME/CFS
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