In-Depth article on ME/CFS Research Plans

MedPage Today’s Update on ME/CFS Research Plans

MedPage Today reposted Shannon Firth’s earlier article on ME/CFS in their 2015 recap and also published an in-depth update by the author. The new article goes in-depth on Ron Davis’ plans for the Big Data study and also includes an interview with Jen Brea and information from the NIH about their planned study of sudden-onset patients at the NIH Clinical Center.
Shannon Firth writes about Ron Davis’ rejections by NIH, OMF’s 2015 donations, and plans for the Big Data study:

Davis, who is also a professor of biochemistry and genetics at Stanford University School of Medicine, saw two grant proposals rejected by the agency and then chose a different tack: private funding. OMF has collected $1.9 million in private donations this year. Davis said that technology companies in Silicon Valley have also volunteered to help in the analysis phase of his project, known as the Severely Ill Big Data study, for free or at a low cost.

The article ends with Jen Brea’s thoughts on potential progress in understanding the disease:

Brea’s hopeful that with adequate public investment, scientists will see major progress in the next 5 to 10 years. She believes finding the reason for her condition might be relatively straight-forward.
But, she added, “[i]t’s really hard to find an answer for something, when you’re not looking.”

Read the entire article on MedPage Today.

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A laptop sitting on a desk. In the background, you can see a cup and saucer, some post-it notes and a folder. On the screen is the Scottish Government's website, with a large title that says 'Scottish Good Practice Statement on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME-CFS).' A red banner is at the bottom of the photo with white writing which says, '#MEAction Scotland responds to the updated Scottish Good Practice Statement on ME.’ The ME Action Scotland logo is in the top left corner.

#MEAction Scotland responds to the updated Scottish Good Practice Statement

The Scottish Government published the updated Scottish Good Practice Statement (SGPS) on ME-CFS on 28th February 2023.  The decision to update the Scottish Good Practice Statement, originally published in 2010, was a result of the Scottish stakeholder review of the 2021 NICE guideline on ME/CFS, and its recommendations for implementing the guideline in Scotland. The

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