Tag: research

2016 Invest in ME Conference write-up on PR

Phoenix Rising’s Mark Berry was at the recent Invest in ME conference and has written an excellent report: A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016 As the article is quite long, here are some tasters (my summaries, with quotes from Mark’s article) to whet your appetite for

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Send Dr. Ron Davis a 75th birthday message!

The Open Medicine Foundation (OMF) is inviting patients and supporters to send Dr. Ron Davis a message for his birthday and a donation to support his End ME/CFS Project. The OMF said that the messages would be compiled into a “massive card” that would be presented to him. Dr. Davis, of Stanford University, will be

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 The alchemy of turning frustration into power

when we feel down, or angry, or frustrated or powerless, let’s refocus a little of our precious energy to move our community forward towards better research, understanding and treatment. Let’s collate all the best resources from our community — the studies, the blogs, the articles, the doctors, the researchers, the patient groups, the healthcare and political situation in each country!

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Tuller slams “terrible” PACE in podcast

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

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QMUL spend £250,000 on PACE data tribunal

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 &

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Listen to Jarred Younger's CDC conference call this Thursday

The latest of the US Centers for Disease Control’s (CDC’s) Patient-Centered Outreach and Communication Activity (PCOCA) telephone conference calls for ME/CFS will take place on Thursday, June 23, and will feature Dr. Jarred Younger. His talk, which will begin at 3:15 pm EDT (Eastern Daylight Time), is titled, “Current and Future Research on ME/CFS Treatments

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N. Ireland: Chasing Competent Care and #MillionsMissing protest

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.

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$3.28 Million Awarded for ME/CFS Biomarker Study

Bateman Horne Center leadership, Drs. Bateman and Vernon, are Co-Investigators with Professor Derya Unutmaz, M.D. on this cutting-edge, 5 year immunogenomic study of ME/CFS that seeks to to develop robust, quantitative immune-biomarker sets for predicting disease susceptibility, stratifying patients and guiding treatment strategies.

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Respond to the NIH's Request for Information

On May 24th, the National Institutes of Health (NIH) released the document Request for Information: Soliciting Input for New Research Strategies for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).  An RFI, or Request for Information is “critical for identification and consideration of research areas and topics to be included in future efforts.”  The Trans-NIH ME/CFS Working Group

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Belfast: Make your voice heard at tomorrow's #MillionsMissing Protest!

What is Chasing Competent Care? Hope 4 ME & Fibro Northern Ireland have organized Chasing Competent Care as part of a campaign to improve medical care for the thousands of ME and fibromyalgia patients in Northern Ireland.  The conference will be tomorrow, Monday, June 6 at 6 PM at the Stormont Hotel, 587 Upper Newtownards

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