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The PACE Trial Fiasco

This study is the worst kind of science, and noticing flaws does not mean we are sociopaths or psychopaths. Neither does it mean we’re close-minded members of a group that’s only interested in our own views.

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A Plea for Decency to White, Chalder & Sharpe

The time for decency in the face of the overwhelming failure of PACE for many has justifiably passed you by, but potential futility aside, I make this appeal regardless. Every day there is a new ME/CFS patient. Today you can spare that patient from harm. You can spare them from being accused of malingering by their own friends and family. You can spare them from wrongful imprisonment in a psychiatric ward. Today you can set ME/CFS research on an expedited path that leads to real treatments and ultimately a cure. End this tragedy now.

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Join the NYC #MillionsMissing Protest

The NYC #MillionsMissing Protest has a full agenda and they are excited to announce several major speakers in attendance including local NYC ME/CFS physician (and Chair of the Chronic Fatigue Syndrome Advisory Committee), Dr. Susan Levine. In addition, local physician-scientist Dr. Mady Hornig from the Columbia University Center for Infection and Immunity (and the ME/CFS Microbe Discovery Project) will also be in attendance. NYC will also have several patients and caregivers tell their personal stories. If you plan to attend and would like to share your story at the protest, please contact them. Finally, as opposed to the shoe display used at other locations, NYC will be doing a unique display using balloons and posters.

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Empty shoes

A few years after getting ill, I discovered that I can write interesting stories about things that happen inside or close to my home. For instance about birds or cats visiting our garden (preferably not at the same time), books, music or even what we had for dinner. This time it is about my shoes, my empty shoes. Who needs shoes while lying on the sofa, anyway?

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Help fund CII’s ME/CFS Monster Study: Microbes, Immunity, & Complex Data

Columbia University – Center for Infection and Immunity has seriously upped the ante on the initial microbe discovery project in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Their impressive, rigorous new study could point the way to diagnostic tests, and even treatments – but first they need the funds to complete the work.

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SMCI Engaged with NIH Officials to Further Appropriate ME/CFS Funding

On May 24, 2016, the National Institutes of Health (NIH) released the first ever Request for Information (RFI) regarding ME/CFS, requesting submissions addressing new research strategies for the disease. Solve ME/CFS Initiative (SMCI) submitted a unique and pointed response to this RFI in the form of an imitation funding announcement.

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Watch Free Livestream – Tools for Managing ME/CFS

Wednesday, August 3rd, 7pm Mountain – Free Livestream. Lucinda Bateman MD, Founder and Chief Medical Officer of the Bateman Horne Center, will present methods used at the BHC to partner with patients and help them achieve the best possible function and symptom reduction.

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