Tag: Myalgic Encephalomyelitis

Canada – open letter to gov't from family of #MillionsMissing

Name/Nom: William A. Downey, BA, BSW Province:  BC Riding/Circonscription: Kelowna Lake Country Comments/Commentaires: I am writing on behalf of over four hundred thousand fellow Canadian citizens whose lives have been, and will continue to be, devastated by the well-known biomedical condition Myalgic Encephalomyelitis (ME); I write as a member of the additional hundreds of thousands of Canadian citizens who

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#MillionsMissing Meets With Government Officials

In late May, protesters all over the world met with their government representatives to discuss the #MillionsMissing demands:  better research funding, better physician training, and government oversight for ME/CFS. In Washington, DC, nine #MillionsMissing protesters met with 17 U.S. Congressional offices: Senator McCain (AZ-R) Lindsey Graham (SC-R) Dianne Feinstein (CA-D) Tammy Baldwin (WI-D) Cory Booker

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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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Ron Davis: Preliminary data shows problems with energy metabolism

Professor Ron Davis presented new findings from his Big Data study at Friday’s Invest in ME 2016 conference. Davis’s preliminary data show serious problems with the biochemical processes needed to convert sugars and fats from food into energy the body can use. If these findings are replicated, this could prove a major step forward in

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Davis at Invest in ME: New Severe Patients Data

Invest in ME’s 2016 international research conference in London ended on Friday with a talk by Professor Ron Davis on his “Severely Ill, Big Data” project that was described by patients as “mind-blowing” and “really exciting”. His talk was the culmination of three days of research presentations by leading names in biomedical ME/CFS research including

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80th “Science to Patients” ME/CFS interview on YouTube

The Dutch ME/CFS Association (ME/CVS Vereniging) has posted the 80th in its video interview series, “Science to Patients” (“Wetenschap voor Patienten”), this time featuring British academic neuropsychiatrist Dr. Neil Harrison. Dr. Harrison, of Sussex University, discusses the possible role of inflammation in the brains of ME/CFS patients in seven mini-interviews in the series. In the

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Scientists write open letter to PLoS One

Five professors of science and mathematics, including Professor Ron Davis of Stanford University, have written to PLoS One demanding the correction of an “inaccurate claim” central to a PACE trial paper on cost-effectiveness that was published in the journal in 2012. Referring to a series of articles by Dr. David Tuller criticizing the PACE trial,

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#MillionsMissing in the News

The #MillionsMissing protest gained worldwide attention in the form of national and local press, including an excellent piece by Rivka Solomon that was first picked up by STAT, a national publication, and then by Business Insider and The Week.  London’s protest was covered by The Evening Standard; and several local radio programs, including BBC Bristol,

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Speeches from the front lines of #MillionsMissing: L.A. Cooper

Hello, and a very warm welcome to #MillionsMissing London. My name is L.A. Cooper, I founded and run Change For M.E. Change For Us. We are middle representatives of this global movement; Melbourne kicked things off at 12pm their time (which is around 2am, 3am GMT, I believe) and Canada and USA follow us later

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