Big Bucks For CFS: Spotlight on CFS Knowledge Center and IACFS/ME

November 18, 2011

Posted by Cort Johnson

Only Four days left for Chase Community Giving and two of our most important CFS non-profits are in the running.  Check out why your vote for these organizations will make a difference for ME/CFS.

CFS Knowledge Center  The CFSKnowledgeCenter is actually two sites: a thriving Community Center with blogs, research surveys and CFS support groups and a knowledge base containing articles and video’s

The CFSKnowledgeCenter already easily had the biggest ME/CFS video collection on the web at but Dan Moricoli, the owner of the site, has taken it one step further and has been collaborating with Dr. Nancy Klimas, to produce a series of video’s on managing and treating CFS. The CFS Knowledge Center also supplies the latest ME/CFS news with its Continuing News Stories section and its weekly updates, has collaborated with Dr. Klimas on several Research Surveys, and has an Expertise Assistance Section with Dr. Hyman. In 2011 the CFSKnowledgeCenter joined the Coalition4ME/CFS.

Click on the below link to check out a video Dan made to support the CFSKnowledgeCenter and the other CFS non-profits in the contest

Chase Community Giving and the CFS Knowledge Center

The CFS KnowledgeCenter has over 3300 members and receives over 15,000 visits a month from over 80 countries around the world. Please vote to win the CFSKnowledgeCenter from 25-100K in the Chase Community Giving Contest for non-profits. This is a non-profit that deserves to win.


The IACFS/ME

International Association for Chronic Fatigue Syndrome - the voice of the professional ME/CFS community, the IACFS/ME (AACFS in Chase) produces the bi-annual International Conferences on CFS research, provides a bulletin, a quarterly newsletter and commentary and advocacy on CFS research issues and they are in the midst of producing a physicians manual.

Our professional organization has been like a sleeping tiger; chronically short of money it has the potential to be a real leader in the CFS research community. Let’s get them some funds so they can realize their potential for us. This is a non-profit we need to win.

IACFS/ME on the Chase Contest (From the Facebook Fundraising Group for Non-profits)

What is the focus/purpose of your nonprofit–research, advocacy, education, support? Please describe briefly.

 

Founded in 1990, the IACFS/ME is a multidisciplinary organization of scientists, clinicians, educators, and patients dedicated to the study, care and treatment of people with CFS/ME and fibromyalgia.  Our advocacy efforts include regular presentations on timely issues at the DHHS-sponsored CFS Advisory Committee meetings in Washington, DC. In addition, we have posted position statements on critical issues of interest to the CFS/ME community, including the PACE trial, DSM5, the hold on MLV studies, and leadership of the CDC CFS program.

 

Our educational efforts have focused on workshops for clinicians held at our more recent international meetings (9/2011:  Ottawa; 3/2009; Reno).  These workshops have enrolled hundreds of professionals who want learn more about diagnosis, treatment and ongoing clinical care of patients with CFS/ME.

 

What projects/areas has your organization funded?

 

IACFS/ME sponsors biennial international conferences to stimulate research and collaboration in the study of CFS/ME and fibromyalgia.  This open scientific forum includes over 500 biomedical and behavioral professionals who study these illnesses with respect to causation, persistence, and treatment.

 

Currently, we are funding an ongoing effort (over the past 18 months) to develop a concise, user-friendly, and evidence-based CFS/ME Primer for physicians and other health practitioners that is expected to be completed by the end of 2011. Fred Friedberg chairs the primer committee of 12 respected CFS/ME professionals.

 

In the last two years we have regularly published a quarterly peer review journal (Bulletin of the IACFS/ME) and a Newsletter (3x a year) which contain recent scientific studies as well as abstracts, opinion pieces, announcements, and other information of interest to the CFS/ME professional and patient communities.

 

About how many members does your group have? (if applicable)

 

Currently, 400.

 

How would you plan to use prize money?The prize money would be used to help support these specific goals: (1) funding medical students and young investigators to attend our next international conference who may be considering a career in the area of CFS/ME; and (2)  Design, production and dissemination of hard copies of the new Physician’s Primer  for CFS/ME to primary care doctors and other health practitioners.

 

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Svetoslav December 5, 2011 at 1:59 pm

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