Friday, April 11, 2014

CFIDS.org survey

Submissions from the CFIDS Association:


There is a lot of activity on a federal level related to ME/CFS -including the Pathway to Prevention (P2P) initiative through the National Institutes of Health. In this post we break down the P2P program and where ME/CFS is in the approval process so far.
http://solvecfs.org/pathways-to-prevention-for-mecfs/


____________



The third meeting of the Institute of Medicine committee on Diagnostic Criteria for ME/CFS <http://www.iom.edu/Activities/Disease/DiagnosisMyalgicEncephalomyelitisChronicFatigueSyndrome/2014-MAY-05.aspx?utm_medium=etmail&utm_source=Institute%20of%20Medicine&utm_campaign=03.31.14+MECFS&utm_content=&utm_term=> will be held May 5-6, 2014 in Washington, D.C. On the afternoon of May 5, the committee will hold an information-gathering session that will be open to the public. The objectives for the committee during this open session are to learn more about the cognitive, sleep, and diagnostic issues related to ME/CFS; and to seek input from patients and caregivers regarding their interaction with health care professionals. They are asking:
1.       In your opinion, what are the most important issues that healthcare providers should be educated about when it comes to diagnosis of ME/CFS?
2.       What are your thoughts on the current terminology used to describe this disease: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome? If you could suggest new terminology, what would you suggest and why?

In order to gather as much response from patients as possible, the CFIDS Association has created a simple online survey to address the IOM Committee's specific questions. We will compile your answers into a report and submit them in full prior to the deadline. Access the online questionnaire HERE https://www.surveymonkey.com/s/IOMQuestions  - DEADLINE, April 22nd at noon, Central
http://solvecfs.org/iom-announces-another-public-meeting-with-the-mecfs-committee/

Leigh A. Reynolds  |  Engagement
LAReynolds@CFIDS.org<mailto:LAReynolds@CFIDS.org>  |  816.863.5577

The CFIDS Association of America | Join us at our new online home! www.SolveCFS.org<http://www.SolveCFS.org>
Working to make ME/CFS widely understood, diagnosable, curable & preventable

No comments: