In our original message, we mentioned that in recent years, the ME/CFS organizations have become more unified. In line with that, NJME/CFSA is supporting the action of the Solve ME/CFS Initiative that is requesting a new advisory committee – ME/CFSAC – reflecting the committee name change that had been requested in recent years.

This is a link to participate in their cause – our cause.
https://solvecfs.secure.force.com/actions/kwac__takeaction…

Disabled people in N.J. just got a benefit they’ve always wanted

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NOVA University continues to enroll patients in their genes study.

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The federal government is looking for Good Day/Bad Day Pictures of Children with ME/CFS to mount on a parents’ ME/CFS information website. It is part of an Information and Resources site for children with various disabilities.

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) Pediatric Working Group reviewed the revisions for the website.  It is looking pretty good, but could benefit from the graphic to make the point that these kids look perfectly “normal” on a good day and look absolutely lousy when sick.  Both parent and child must agree to the placement of the photos on an open-to-the-public website.

Photos are needed by Sunday night (May 20^th.)  Send as attachment to: Kenneth.j.friedman@gmail.com

Thank you,
Kenneth J. Friedman, Ph.D.
CFSAC Pediatric Working Group