Author: Jaime S

Naviaux's metabolism paper is about as big as you think

Robert Naviaux, at researcher at University of California, San Diego, published a landmark paper yesterday on the metabolites of patients with ME/CFS. It made news around the world. Below, an in-depth analysis of the paper’s findings and its implications. Note: some of the information below is speculative, linking Naviaux’s findings to other research.  Findings not

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Join the #MillionsMissing fundraising team!

With the help of our community’s ingenuity, strength, and indomitable spirit, #MEAction has: Spearheaded a petition to release the PACE trial data, garnering over 12,000 signatures.  This was presented in the recent FOI request to release PACE data as evidence of peaceful patient involvement Launched the worldwide protest #MillionsMissing in 12 locations to raise awareness

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Canada: officials turn down grant app because CFS "isn't real"

For many months the Canadian Institutes of Health Research, the Canadian equivalent to the NIH, has advised that: “The IMHA [the Institute of Musculoskeletal Health and Arthritis] has committed to supporting the creation of a national network for translational research in ME/CFS in 2016-2017. This network will facilitate capacity building and provide a forum to

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#MEAction RFI Poll Report (Part 3 of 3)

This is the third article in our series on the #MEAction RFI polling data.  Click here for Part I and here for Part II. Clinical and Research Testing Perhaps unsurprisingly given Davis’s recent progress, metabolomics were what patients believed ME research needs to progress swiftly; two-day exercise testing was rated as less important, perhaps due

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#MEAction RFI Poll Report (Part 2 of 3)

This is the second part of the RFI Poll Report.  To see the Part 1, click here. The Need for an Inclusive Model of Research Severe patients The inclusion of severe patients in research emerged as a theme in stakeholder comments. Severe patients will likely present with gross biological abnormalities, and therefore present a significant

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Take Action on Severe ME Day

Today, August 8th, is Severe ME day.  Today is a day of remembrance, when we think of those whom we have lost to ME.  Severe ME Day is August 8th because that was Sophia Mirza‘s birthday.  Her death in 2003 was one of the first in which cause of death was listed as myalgic encephalomyelitis.

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#MEAction RFI Poll Report (Part 1 of 3)

First of all, thank you so much to everyone who responded to the #MEAction survey to make our response to the NIH as comprehensive and representative as possible! 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). 

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Our losses in the ME community

It’s been a devastating summer for the ME community.  We have lost Jodi Bassett, Louise Ramage, Tink Bastian, and Linda Hayes Burke.  Yesterday, we learned that we lost Tom Jarrett. Jodi Bassett, 41, was a passionate advocate for ME who helped thousands of people better understand their condition through her website The Hummingbirds’ Foundation for

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New research: gut microbes identify 83% of patients

Signs of bacterial infection and inflammation Recently, a team of researchers led by Ludovic Giloteaux of Cornell University measured the levels of several biomarkers in 49 ME/CFS patients and 39 controls, including LPS to measure bacteria in the bloodstream and CD14 and C-reactive protein to measure inflammation.  Researchers also measured the levels of intestinal fatty

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Attend the MEpedia online meet-up this Thursday!

What can you do for ME activism today? Many patients, caregivers, physicians and educators would like to contribute to ME activism in a meaningful way, but patients have limited resources and energy. ME patients aren’t working alone, however: if even a small percentage of the ME population were to work together, we would still be

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