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Solve ME/CFS Initiative Update

July 15, 2016 No Comments

Last year was a pivotal point in the battle against ME/CFS. Game-changing reports from the Institute of Medicine and the National Institutes of Health’s Pathways to Prevention Workshop delivered long awaited public credibility for our disease. The federal ME/CFS landscape has shifted, and there is newfound openness and awareness among key governmental agencies. This positive change has heightened the battle as we fight for scientific understanding, fight for treatments and fight for a cure.

New research: gut microbes identify 83% of patients

July 13, 2016 8 Comments

Signs of bacterial infection and inflammation Recently, a team of researchers led by Ludovic Giloteaux of Cornell University measured the levels of several biomarkers in 49 ME/CFS patients and 39 controls, including LPS to measure bacteria in the bloodstream and CD14 and C-reactive protein to measure inflammation. Researchers also measured the levels of intestinal fatty

Tuller slams “terrible” PACE in podcast

July 13, 2016 2 Comments

Dr. David Tuller has provided an overview and update of his work criticizing the PACE trial in a podcast interview with Professor Vincent Racaniello on This Week in Virology (TWiV). Dr. Tuller, of University of California, Berkeley, published a series of damning critiques of the study on Professor Racaniello’s Virology Blog, starting with a lengthy article

Advocates and scientists respond to NIH’s Request for Information

July 11, 2016 2 Comments

Leading scientists, organisations and patients around the world have responded to the US National Institutes of Health’s (NIH’s) Request for Information to guide its research strategy on ME/CFS. It is the first time that the NIH has asked for public input on the disease. The request, made in May, drew public responses from Dr. Ronald

QMUL spend £250,000 on PACE data tribunal

July 9, 2016 2 Comments

Queen Mary University of London (QMUL) have revealed that they spent £250,000 on legal fees in the recent tribunal concerning the release of anonymised data from the PACE trial. Their statement was made in response to a query made under the Freedom of Information Act by Mr. John Peters. QMUL paid £160,000 to Mills &

Medical Textbooks Earn a Failing Grade in ME/CFS – 1 of 2

July 8, 2016 8 Comments

Part II in our series on medical education and ME Note: This is a two-part article in our series on education in ME/CFS. Part 1 covers UpToDate, the University of North Texas, Michigan State University, and the University of Nebraska; Part 2 will cover the University of California–San Francisco, the University of North Carolina, and

Jennifer Brea gives rallying TED Talk

July 4, 2016 1 Comment

On June 27, Jennifer Brea, #MEAction co-founder, filmmaker, TED Fellow, readied herself to speak in Banff, Canada at TEDSummit 2016. The process of preparing can be described as grueling for anyone, much less for someone with ME: Brea had spent weeks writing and fact-checking the talk with a committee from TED, and now had to keep her focus

Introducing the Bateman Horne Center Online Patient Library

June 22, 2016 1 Comment

A collection of publications, videos, posts and links to other online resources helpful to those living with ME/CFS and Fibromyalgia.

N. Ireland: Chasing Competent Care and #MillionsMissing protest

June 20, 2016 2 Comments

Hope 4 ME & Fibro Northern Ireland ran an ambitious and exciting conference on Monday 6th June in The Stormont Hotel, Belfast. The conference, “Chasing Competent Care” delivered a strong message calling for change to the currently inadequate care situation for ME and fibromyalgia patients in Northern Ireland.

New ME/CFS Book: Lighting Up a Hidden World

June 16, 2016 7 Comments

This month, Valerie Free’s new book, Lighting Up a Hidden World: CFS and ME will be released to the public. In 1990, Valerie Free was a vibrant, thirty-year-old woman: a court stenographer, wife, and mother. In July of that year, she came down with a sudden, flu-like illness and after months of unrelenting and bizarre

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