Mass. CFIDS/ME & FM Presentation to IoM

[Nielk]

Presentation by Charmian Proskauer:

 

[Nielk]

Written presentation:

http://www.masscfids.org/advocacy/503-remarks-to-the-institute-of-medicine-committee

Excerpt:

A separate clinical definition for pediatric ME/CFS has been developed and should be added to the list of clinical definitions that you consider in your study.

• The adult definition is not appropriate for children and youth, as the initial presentation of symptoms may be quite different from that of adults. Also it may not be appropriate to ask an ill child to wait until the symptoms have persisted for 6 months (most of a school year) before receiving a diagnosis which will allow helpful management and treatments to be put in place.
• While the onset, symptoms and course of the illness in youth can be quite different from that in adults, as in adults the symptoms vary in nature and intensity on any given day. This variability can cause providers and others uninformed about the illness to believe the symptoms are psychological.
• Also as in adults, the illness is usually prolonged, lasting from several years to 10 or more. When a child changes schools, often the process of educating school officials has to start all over again.
• The range of issues needing to be dealt with is also different — important aspects for a child include educational needs and social development as well as physical health. Addressing these issues involves the school, the family, and the community as well as providers of health care.

Families with a chronically ill child already face many challenges. Caring for an ill child who does not have a recognized diagnosis, or with a diagnosis that family, friends, and school officials do not understand, is especially difficult. Without a diagnosis, the more severely ill a child is, the more likely the family will be under pressure from the school and the threat of legal action against them.