Category: United States

#MillionMissing Activists Meet with HHS for Follow-Up

As reported in the August 5 update on the meeting between HHS and advocates for ME on August 1, Assistant Secretary of Health Dr. Karen DeSalvo had committed to follow up on specific actions and meet again in October. On October 24, Jen Brea, Terri Wilder, Carol Head, Jennie Spotila, and Mary Dimmock met again

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#MEAction US protest demands

These demands were originally issued for the May 25, 2016 MillionsMissing demonstrations. Minor revisions were made to the demands in November 2016 to reflect community input on the definition, the primer, the name, and the need for improvements in clinical care.   You can access and download a pdf of the revised protest demands by clicking

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Take Lenny Jason's survey on emotional impact of having ME

Lenny Jason‘s recent research paper, Mortality in patients with ME and CFS, found patients are significantly at risk for earlier all-cause mortality with the top three causes of death being suicide, cardiovascular problems, and cancer.  Jason is well-known for his epidemiology work, with over 80 articles on ME; he was also involved in the creation

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Thoughts on NIH speakers from Dr. Zaher Nahle

It was truly unsettling to learn about the news of an invited speaker lecturing at the National Institutes of Health (NIH) on November 9, 2016. For decades, the speaker has been a staunch adversary of studying the pathophysiology of ME/CFS and refuses to acknowledge its root cause. I have written many times previously, including in an editorial in March of this year, on the aftermath of the revitalization of the Trans-NIH ME/CFS Working Group—specifically on the perils caused by what I then called “ME/CFS deniers” and “psychosomatization sympathizers.” We will not dedicate additional time to these individuals or elaborate on their misguided theories on our pages other than to make the following three points…

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ME activist calls on NIH to "get back to science" at Shorter Talk

M.E. denier, Edward Shorter, called CFS the modern version of hysteria in a presentation chronicling the history of 19th century hysteria before approximately 20 people at the National Institute of Health (NIH) on Nov. 9th. Shorter is a professor of the history of medicine at the University of Toronto. In his presentation, Shorter showed a

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Dr. Komaroff’s Webinar Provides Hypothesis, Hot Research and Hope

Dr. Komaroff’s Webinar Provides His Hypothesis, Hot Research and Hope Link to webinar: https://youtu.be/ENrdrGj0p-c by Darla N. In a webinar the Solve ME/CFS Initiative hosted on Nov. 10, Dr. Anthony Komaroff presented his hypothesis on ME’s cause and five popular areas of current ME research. Komaroff, Simcox-Clifford-Higby professor of medicine at Harvard Medical School and senior

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Shorter invited to NIH to share perspective of disease denialism

On Thursday, November 3, Dr. Maureen Hanson shared a screenshot revealing a planned talk on November 9th at the NIH by the historian Dr. Edward Shorter titled “Chronic Fatigue Syndrome in Historical Perspective.” Dr. Shorter has a long history of treating patients with ME with disdain and denial, as illustrated in an article he wrote for

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Watch the Bateman Horne Center Meeting Livestream

Lucinda Bateman, MD, BHC Founder and Medical Director, is engaged in thought leadership discussions on ME/CFS and FM across the globe, traveling to several conferences in Oct. At this meeting she will will recap the information, insights, progress and promise.

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New Research Project Launches through SMCI’s Targeted Initiative Research Program

SMCI recently launched a new partnership as a component of our targeted initiative program, within our Pathways and Biomarkers Discovery Track. The project consists of original research in the areas of bioenergetics, metabolomics, and lipidomics using high-throughput technology. Importantly, this new SMCI research project relies on blood from well-qualified patients from The Levine Clinic; it also builds on recent discoveries in gut microbiome from Dr. Maureen Hanson’s lab, which uses these same patients.

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