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Pediatric Primer Not For Prime Time

Reprinted with the kind permission of Denise Lopez-Majano [1].

Note: This post oringally appeared on Jennie Spotila’s blog, Occupy ME [2]. If you wish to make a comment please make sure to copy your comment after the original post HERE [1]


By Denise Lopez-Majano

Young people with ME face huge difficulty in finding knowledgeable healthcare providers because there is only one full-time pediatric ME specialist in the United States, and he is unable to take on any more patients.

So I was very hopeful that the new pediatric primer – Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer [3] – would better equip pediatricians to diagnose and help young patients with ME. After all, the primer’s authors include most of the world’s pediatric ME specialists, each of whom have decades of experience and insight regarding ME.

Unfortunately, for a number of reasons, I do not think the pediatric primer is ready for prime time.
There are some things the primer does very well:

However, there are serious flaws and deficits in the primer that must be corrected before it receives broad distribution.
First of all, the primer uses problematic language to describe people with ME:

Second, the primer presents confusing and mixed messaging on the diagnostic criteria for ME:

Third, improvements are needed in the discussions of educational and social issues:

We all want this disease to be taken seriously by pediatricians, and we desperately need more pediatricians who can help young people with ME. As much as I want to share the primer far and wide, I am reluctant to do so in its current form. The primer does not convey consistent information clearly enough to help pediatricians understand this disease and its impact. Don’t get me wrong. I truly appreciate the work of the primer authors. But I think the primer wasn’t ready for publication. I hope there is a revised version soon, so we can truly equip pediatricians to diagnose and manage ME in young patients.