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International ME/CFS and FM Awareness Day is May 12th, 2017. Jody Smith shares some information about upcoming events and ways you can be heard …  Can you believe it’s been 25 years since Thomas Hennessy, Jr., chose May 12th to be our international awareness day? He was influenced by the fact that May 12th was also Florence […]

Phoenix Rising: The Gift That Keeps on Giving All Year Long

This holiday season Jody Smith turns her eyes to the people of Phoenix Rising and gives thanks for you all … Phoenix Rising is a community that I will always love. Seven years ago I stumbled upon this place in its early days. I had been isolated and lonely for a number of years because […]

Invisible Illness Awareness Week 2016: Our Voices Need to Be Heard

Never heard of Invisible Illness Awareness Week?  You’re not alone. Jody Smith sheds a little light to make it more visible … From time immemorial, people have been pushed aside and ignored for one reason or another. Nobody likes feeling invisible. That goes for the kid in the playground who doesn’t get chosen for baseball, for the […]

Lipkin’s Monster ME/CFS Study: Microbes, Immunity & Big Data

The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work. Columbia University’s Center for Infection and Immunity(CII) has seriously upped the ante on the initial microbe discovery project in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Their impressive, rigorous new study could point […]

Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.  August 8th, 2016 is Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis, an important day in the ME community. It’s a day that is intended to bring attention to those whose voices are the most quiet, whose […]

Mark Berry reports on Dr. Gibson’s introduction and Dr. Whittemore’s keynote speech, at the 11th Invest in ME International ME Conference in London. The 11th Invest in ME International ME Conference (IIMEC11) was held at One Great George Street, just down the road from its former home, on June 3rd, 2016. You can view the […]

Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London … The 11th Invest in ME International ME Conference (IIMEC11) was held at One Great George Street, just down the road from its previous home on Birdcage Walk, on Friday June 3rd, 2016. You […]

Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS … Recently, Professor Jonathan Edwards, with patients and carers as co-authors (including me), published a peer-reviewed editorial in the medical journal Fatigue: Biomedicine, Health & Behavior. The article became their most-viewed paper within a […]

Phoenix Rising is delighted to support the demands being made in the ME/CFS community’s first-ever global day of protest … Campaign platform #MEAction is organising a global day of protest for ME and CFS, with a campaign called “Millions Missing,” reflecting the millions of patients “missing from their careers, schools, social lives and families,” the […]

Sasha announces a new resource of appropriate photos for ME/CFS media stories … We’ve all seen them in the news stories about ME/CFS: the guy in a suit at the office, yawning; the beautiful woman sitting at her desk with her immaculate make-up and elegantly coiffed hair, hand to her head and looking slightly pained. […]

Phoenix Rising tells QMUL: release the PACE trial data

Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request…  On 1 February, ME/CFS patient Clark Ellis wrote an open letter to […]

Simon McGrath concludes his blog about the remarkable Prof George Davey Smith’s smart ideas for understanding diseases, which may soon be applied to ME/CFS. Last November, science star Professor George Davey Smith gave a talk at the UK CFS/ME Research Collaborative (CMRC) Annual Science Conference laying out ideas for bigger, better, smarter research. Although much […]