Category: United States

NIH: ME/CFS research applications are low quality

When we started working on the 21st Century Cures Act lobbying campaign we quickly learned that NIH officials are continuing to tell people that no one is interested in researching ME/CFS and that the research applications they have received have been poor. At Tuesday’s CFSAC meeting Cheryl Kitt, the Deputy Director of the Center for

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Help us get ME in the 21st Century Cures Act

#MEAction recently launched as an online platform to help anyone become an advocate. Now we are announcing our own advocacy action: A quick-strike lobbying campaign this August to spur the US Congress to vastly increase research funding for ME/CFS at the National Institutes of Health. We launched this effort to capitalize on the 21st Century

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DePaul Fatigue Study: ME, CFS, MS, Lupus, and Cancer

DePaul University researchers invite persons with ME, CFS, MS, Lupus, and Cancer to participate in a voluntary research study to determine which symptoms may be commonly experienced by individuals in multiple fatiguing illness groups, and which symptoms may be unique to each illness. Participation includes completion of a confidential online questionnaire, which takes approximately 45 minutes to complete.

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Get ME/CFS on HBO's "Last Night Tonight with John Oliver"

John Oliver, please talk about ME/CFS Funding! Please sign up/login to HBO’s “Last Week with John Oliver” page to “like” and comment on the topic idea of funding for ME/CFS: Ask John Oliver to talk about ME/CFS Funding! For those of you not familiar with “Last Week Tonight with John Oliver” – it has become

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OMF Severely Ill Patient Study Gets $500,000 donation

[pullquote align=”right” cite=”” link=”” color=”” class=”” size=””]Very little research has been done in the bedbound patients “Hopefully, the more severely ill will have a stronger signal of what’s going wrong.”[/pullquote] The Open Medicine Foundation’s Severely Ill Patient Big Data study has gotten a HUGE boost with the help of an anonymous donor. This $500,000 donation will

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CDC – Public Health Promotion of Chronic Fatigue Syndrome

The CDC wants information from businesses about producing public radio/audio recordings to increase ME/CFS awareness
Deadline: Aug 05, 2015 4:00 pm Eastern
Objectives:
The goal of this work is to increase awareness of CFS through the use of public radio/audio recording. The specific objectives are to 1) produce radio/audio recording, 2) produce segments that are broadcast on NPR’s Morning Edition and on the NPR website; and 3) increase awareness of CFS and further facilitate the support of loved ones and society as a whole to improve the quality of life for patients with CFS.

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Comment on the US NIH Strategic Plan

The US NIH requests public comments on their strategic plan The United States National Institutes of Health wants feedback from you on their proposed strategic plan for the next 5 years. Jennie Spotila at Occupy CFS explains why this is important: One of the major weakness of the plan is that it leaves all the

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CFSAC Meeting Welcomes Public Comments

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) will hold a public meeting on Tuesday, August 18, 2015, from 9:00 a.m. until 5:00 p.m., ET and Wednesday, August 19, 2015, from 9:00 a.m. until 5:00 p.m., ET. Public comment may be provided in person, by telephone, or in written form.

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