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Browse Actions: Research

Take the NYU Research Survey about your ME Experience

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I’m a researcher at NYU interested in the experiences of people with ME/CFS in the U.S ...

Stop CDC from Hiring Shoddy Contractor for ME Treatment Guidelines!

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PETITION UPDATE (Tuesday, September 11, 2018) The CDC has posted an updated, competitive bid solicitation for the development of federal treatment guidelines for ME. The community outcry, and over 8,000 petition signatures, protesting the previous rigged, sole-source contract got the CDC's attention. Yet the solicitation is still only open through Thursday, September ...

Do you use a wheelchair? A team of engineers needs your input.

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The UC San Diego Smart WheelChair team is asking ME patients to fill out a short google questioner about how ME impacts their mobility and how they can best design a wheelchair accessory that would support your independence.  The team of undergraduate engineering students are working to design an affordable, open ...

The NIH Plan for ME is Dismal

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Occupy M.E. describes the NIH's current plan to address the crisis of Myalgic Encephalomyelitis as "do a little and wait." Blogger Jennie Spotila describes the agency's plan, which was found buried in the NIH 2019 budget request sent to Congress, as follows: NIH is going to wait for the new Collaborative ...

Calling all Patients: Fill Out the Research Survey about PEM

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DePaul University is asking the patient population to fill out a survey to better understand the effects of post-exertional malaise (PEM) in people with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. The patient community aided in the development of this questionnaire to more accurately define and measure abnormal responses to physical and/or ...

The End ME/CFS Tour in Boston w/ Linda Tannenbaum

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Open Medicine Foundation (OMF) president, Linda Tannenbaum, will give a special lecture on the state of ME/CFS research at Newton-Wellesley Hospital in Boston, MA, on Saturday, November 4, 2017 from 1:00 to 3:30 pm. The event is sponsored by the Massachusetts CFIDS/ME & FM Association. Open Medicine Foundation® (OMF) is the leading research organization working to end ME/CFS and ...

The End ME/CFS Tour in NYC w/ Linda Tannenbaum

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Open Medicine Foundation (OMF) president, Linda Tannenbaum, will give a special lecture on the state of ME/CFS research at Mount Sinai West Hospital in New York City on Wednesday, November 1, 2017 from 6:30-8:00 pm. The event will be moderated by Terri L. Wilder, #MEAction New York Activist. Open Medicine Foundation® ...

SF Bay Area: Get Stanford Some Healthy Controls!

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If you live in the San Francisco Bay Area, or know any others who do, please consider asking them to donate blood to the Stanford Genome Technology Center as a healthy control. The blood will be used for multiple purposes, including in Ron Davis's ME/CFS research.  If you know individuals ...

Drastic changes to Ampligen clinical trial hurts ME patients – sign the petition to fight it

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Patients in the Ampligen clinical trial are asking for community help to protest changes that will force many to stop getting this medicine. Please sign our petition urging Hemispherx to put ME patients first, always ...

Canada: Find CIHR qualified grant reviewers!

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When a grant proposal is submitted, a panel of experts will examine it for merit before making a final decision.  But what happens when those 'experts' deny the very existence of the disease they purport to study? Memorably, a recent grant proposal was submitted to Canada's CIHR (Canadian Institutes of Health ...