Chronic Fatigue Syndrome Archives

#MillionsMissing Meets With Government Officials

June 6, 2016 5 Comments

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

Respond to the NIH's Request for Information

June 6, 2016 3 Comments

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

Ron Davis: Preliminary data shows problems with energy metabolism

June 4, 2016 30 Comments

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

Davis at Invest in ME: New Severe Patients Data

June 4, 2016 3 Comments

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

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

June 3, 2016 1 Comment

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

Scientists write open letter to PLoS One

June 1, 2016 2 Comments

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,

#MillionsMissing in the News

May 30, 2016 No Comments

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,

Support the #MillionsMissing in Belfast and Bergen

May 29, 2016 No Comments

Belfast, Ireland and Bergen, Norway will be joining their voices to the #MillionsMissing protest this June. In Belfast, shoes will be displayed at the Chasing Competent Care conference on Monday, June 6 at 6 PM at the Stormont Hotel, 587 Upper Newtownards Road, BT4 3LP Belfast. The shoes will be displayed down the side of

Speeches from the front lines of #MillionsMissing: Ryan Prior

May 28, 2016 1 Comment

My name is Ryan Prior. I’m a filmmaker and a journalist and an entrepreneur from Atlanta, and I’ve come here for this protest. October 22, 2006 was a day that my life completely changed forever. I came home from school and I was too ill to hold my head up. It was a similar story

2016 ME/CFS conference season opens

May 28, 2016 No Comments

The Invest in ME conference in London on Friday, 3 June is the first of three major ME/CFS conferences this year and there are indications that patients may be able to access live updates or recorded presentations from all three. Some audience members attending the Invest in ME conference are expected to report live on

Tag: Chronic Fatigue Syndrome