Meet the Scientists: Dr Brett Lidbury
April 5, 2016
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Meet Dr Brett Lidbury, biometrics researcher at the Australian National University in Canberra, Australia.
Category: Research
HHS publishes revised responses to CFSAC recommendations about NIH initiative
March 30, 2016
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After responding negatively to most of CFSAC’s recommendations for the ME/CFS research program, the NIH has now revised many of their responses to better address CFSAC’s requests. Following the announcement of the NIH’s new ME/CFS research program, the Chronic Fatigue Syndrome Advisory Committee (CFSAC) submitted formal recommendations to the agency about how the program should be structured. These recommendations
Sense About Statistics says: PACE trial doomed by flaws
March 24, 2016
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Dr Rebecca Goldin, blogging for Sense About Statistics, has said that flaws in the design of the PACE trial “were enough to doom its results from the start”. Her 7,000-word post described the study’s design and the extensive changes to the planned analyses. Dr Goldin, who is the Director of the organisation, writes, “The study
George Davey Smith to patients: “new era” for ME/CFS research
March 23, 2016
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In an invited post on UK charity Action for ME’s blog, Professor George Davey Smith of Bristol University has told patients that the UK’s planned, major ME/CFS project, the Grand Challenge could “herald a new era in ME research”. Action for ME’s CEO, Sonya Chowdhury, described the project, which was announced at October’s UK CFS/ME
Clarification on NINDS role in ME/CFS Research
March 19, 2016
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After the March 8th telebriefing with the NIH, many advocates in the ME community still came away with questions. Billie Moore, NJME/CFSA Advocacy Chair, and member of the USAWGaAnd CDC’s TDW Workgroup, was one of them. Though representatives of the NIH spoke at great length about the big picture of the new ME/CFS efforts that the organization is
Study says scientists must agree on classifying patients
March 18, 2016
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New US paper says it is critical that scientists world-wide develop consensus on how to identify and classify chronic fatigue syndrome and myalgic encephalomyelitis patients using clinical and research criteria.
24 organisations in 14 countries tell QMUL: release PACE data
March 13, 2016
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All 13 organisations in the European ME Alliance (EMEA) have answered ME/CFS patient Clark Ellis’s call to request Queen Mary University of London (QMUL) to release data from the PACE trial. QMUL are due to appeal the UK Information Commissioner’s decision that they should release the data to a patient who requested it, at a
New Bill Would Up NIH/FDA Funding For Neglected Diseases
March 10, 2016
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Last Thursday, Elizabeth Warren (D-MA) and Patty Murray (D-WA) introduced an important new bill which seeks to increase funding for biomedical innovation and targeting diseases with unmet treatment needs. The $5 billion proposal, called the National Biomedical Research Act, is just one of six bills now being discussed by the Health, Education, Labor & Pensions
NIH: Solving ME/CFS will need “an army of really good researchers working together”
March 9, 2016
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At the NIH tele-briefing on Tuesday, March 8th, Dr Walter Koroshetz, Director of NINDS set out the NIH’s strategy for tackling ME/CFS. He said it won’t be an easy task ‘else it would have been solved long ago’, and it wasn’t clear where the solution will come from. The NIH’s focus will be on attracting
CureME research news email service launches
March 9, 2016
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Swedish ME patient Kasper Ezelius has announced the launch of an email service called CureME that will allow subscribers to both post and receive news on ME/CFS. Subscribers can choose to receive research news only, which is the main focus of the site. Registration is free. The list replaces Co-cure, an ME/CS information