Supporting the Educational Needs of Young People with ME/CFS Dr. - - PowerPoint PPT Presentation

Supporting the Educational Needs

• f Young People with ME/CFS
• Dr. Faith Newton, Workgroup Chair

Professor of Education Delaware State University CFSAC December, 2017

Working Group Members

• Robin Curtis (CDC),
• Ken Friedman (Associate Professor of Pharmacology and

Physiology, New Jersey Medical School, retired)

• Beth Mattey (National Association of School Nurses)
• Carmen Sanchez (US Dept. of Education)
• Beth Unger (CDC)
• Vicky Whittemore (NINDS)

Update on June 2017 Recommendations –

• Carmen Sanchez will be appointed as an ex officio from

the Office of Special Education at the US Department of Education the next time the CFSAC charter is renewed.

Disseminating Information about ME/CFS to School Nurses

• Preliminary discussions were held among the working group

members on submitting a 50 word or less synopsis of ME/CFS to the “Nurse’s Weekly Digest.” There would be a link to the CDC ME/CFS Pediatric website: https://www.cdc.gov/me-cfs/me-cfs-children/index.html

Disseminating Information about ME/CFS to School Nurses

• Discussion was held on submitting an article on ME/CFS and

educating children in schools to the Journal of School Nursing and/or NASN School Nurse Journal, both of which are peer reviewed journals. Dr. Ken Friedman will look into the possibility

• f distributing ME/CFS Diagnosis and Management in Young

People: A Primer which was published in Frontiers in Pediatrics.

Disseminating Information about ME/CFS to School Nurses

• Beth Mattey, Past President of the NASN, will facilitate

this process with the current President of the NASN.

• The Nurse’s Weekly Digest reaches about 33,000 nurses in

all 50 states.

Disseminating Information about ME/CFS to Parents through the Parent Information Centers

• Preliminary discussions were held concerning working with the

National Association of School Nurses and the CDC to develop a webinar on ME/CFS to be distributed through the Parent Information Centers.

Educational Diagnosticians

• In many States, these are educators in the schools who conduct

assessments and meetings for Individual Education Plans and 504 Plans.

• The Working Group is pursuing how information about chronic

illnesses is distributed to this group of educators. We are going to contact the Council of Exceptional Children as well as the National Organization for Chronic Illnesses and see how information is distributed and/or could be distributed to schools.

Educating Teachers about ME/CFS

• Contact teachers who have worked with students who have

ME/CFS and ask them to share what has been successful – CDC website

• Contact the national teachers’ associations - specifically those

that work with their members on Special Education Law – Other Health Impaired and 504 Plans

• How is information distributed to teachers nationwide regarding

chronic illnesses and the accommodations and modifications for students with ME/CFS to be successful in the classroom?

CEU’s- Continuing Education Unit Credits

• The working group had some initial conversation about looking

into how the various organizations are approved for CEU’s and could we pursue this with respect to school nurses.

Questions, Comments & Discussion