Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Monday, January 2, 2012

Donating To ME Research

On the heels of my last post, discussing why ME/CFS research is behind the times, I decided to donate funds to an ME/CFS research laboratory.   (Unfortunately, the best time to do this would have been last week, which would have allowed me to deduct the donation from my 2011 taxes. But the important thing is to support the cause.)

The question is, who to donate to?  What institutes are doing the best research?  I had only a vague sense, so I decided to post the question to the community at Phoenix Rising.  The responses were very interesting.  One poster noted that there are five research institutes, all of which are relatively new, and all of which are doing promising work.  There is also some collaboration between the five, which is often they key to progress.

In no particular order, the institutes are:

-Dr. Nancy Klimas' institute at Nova South University
-Dr. Enlander's Mt. Sinai ME/CFS Center in New York
-Dr. Peterson's Simmaron Research Center at Bond University, Australia
-Chronic Fatigue Initiative (CFI), which funds other researchers
-Dr. Bateman's OFFER institute at the University of Utah.

After researching these five institutes, I've decided to donate to CFI, although I may revisit the decision next year when it comes time to donate again.

My decision was based on CFI's broad range of initiatives.  They fund CFI research on a number or fronts, including a project called Cohort Recruitment which seeks to address the problem of the tainted research pool that I discussed in my last post.  This project involves collecting a core group of 200 research subjects who are confirmed to have true ME/CFS, to provide researchers with a pure sample group.  They are also creating a CFS "bio bank" of blood and tissue samples from the Cohort participants.

The only problem is, while the CFI websites states that they are funded by private donations, it does not specify how one can donate.  I've written and email to CFI and will update this information later.

1/24/12 Update:  I never received a response from CFI, so I'm moving on to Plan B.

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