#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
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.
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
[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
Help Find a Cure for Whitney Dafoe and others like him!
Hearing that funding has been reduced to nothing is heartbreaking. Please hear out these words from something who is suffering, and help him:
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.
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
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.
Tune in to the LIVE webcast on July 1st, 1:00PM EST and watch Dr Ian Lipkin and Dr Mady Hornig take the #ChilliMEchallenge!
We have our next update on END ME/CFS’s Big Data study of severely ill patients and the sum raised so far is an amazing $103,840, from 235 donations.
