Author: #MEAction

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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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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2016 ME/CFS conference season opens

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

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Speeches from the Front Lines of #MillionsMissing: Jennifer Brea

#MEAction co-founder Jennifer Brea at the #MillionsMissing protest in Washington, DC, May 25, 2016 “Okay awesome. Wow this is amazing. As soon as I pulled up to the square here I just started sobbing because I have been waiting in some sense ever since I got sick for this moment to be  together here today

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Whittemore presents ME/CFS proposal to NIH, May 26, 2016

Chairman: For open session, this is a concept clearance, and just to remind you, normally we’re expected to spend our appropriated funds, sort of open to all things within our mission, and if we decided to a priori say we’re going to set aside a pot of money for some particular topic, then we need to

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Videocast of Trans-NIH group’s ME/CFS proposals at 2pm today

The US Trans-NIH (National Institutes of Health) ME/CFS Working Group will present its proposal to advance research into the disease during a live webcast at 2pm (Eastern Time) on Thursday 26 May. The broadcast will take place from a meeting of the National Advisory Neurological Disorders and Stroke Council. In order to be funded, proposals

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UK: sign the petition close to forcing government response

A petition for more biomedical research funding for ME/CFS that was started in January is only 2,000 signatures short of the 10,000 needed to force the UK government to issue a response. The signatures must be gathered by 13 July. The petition is on the UK Government and Parliament Petitions site, where any of the

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Swedish Government “no interest at all” in ME/CFS

A Swedish ME/CFS charity has slammed the attitude of the country’s government towards the disease. In an interview with British ME/CFS fundraiser Mike Harley, the charity’s representatives stated, “The government appear to take no interest at all in this disease, which means that there isn’t any serious commitment, no sense of urgency whatsoever.” “There currently

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