A new primer focusing on the pediatrics aspect of ME/CFS was recently published in the Journal Frontiers in Pediatrics, made possible by the financial support of the Solve ME/CFS Initiative. The pediatric primer was the vision of colleagues at of the New Jersey ME/CFS Association who assembled a team of experts to develop this material, led by SMCI Research Advisory Council Member, Dr. Peter Rowe. The article will be a valuable tool to educate medical professionals and caregivers about ME/CFS in children.
Go here to read the full primer.
Collaborations like this, in which different entities come together to realize a project, will significantly advance the knowledge about this disease. Dr Peter Rowe, lead author of this primer described the genesis and importance of this effort:
“Three years ago, Ken Friedman, Alan Gurwitt, and Rosemary Underhill invited an international group of experienced ME/CFS clinicians to write a comprehensive guide to the diagnosis and management of ME/CFS in adolescents and young adults. The IACFSME had published a guide for adults, but there was no similar publication to help clinicians manage the unique aspects of ME/CFS in children and adolescents.
Members of the writing committee spoke on conference calls and via e-mail frequently over the next two years, reviewing drafts and having spirited discussions about the best wording for our recommendations. The result of those efforts is the Primer, which we think will be a very helpful resource to anyone working with children and young adults with the illness. It contains a wealth of practical clinical advice—including tips on taking the history, what to look for on the physical examination, ways to distinguish ME/CFS from other fatiguing illnesses, and also detailed strategies for addressing specific symptoms such as headaches, pain, menstrual dysfunction, or insomnia.
Because orthostatic intolerance is one of the most treatable contributors to pediatric ME/CFS symptoms, the Primer also gives detailed suggestions on how to diagnosis and manage orthostatic intolerance, from postural maneuvers and compression garments that reduce symptoms to specific doses of medications. The text incorporates techniques on how to gradually advance exercise without provoking post-exertional malaise, ways to cope with the ups and downs in function, sections on educational accommodations, and even sample letters to make it easier for physicians and other health care personnel to communicate with schools. We think parents will find the Primer helpful as well. It should fill a large gap in the literature, and our hope is that it will promote improved care for young people with ME/CFS around the world.”
(The writing committee consisted of Peter C. Rowe, Rosemary A. Underhill, Kenneth J. Friedman, Alan Gurwitt, Marvin S. Medow, Malcolm S. Schwartz, Nigel Speight, Julian M. Stewart, Rosamund Vallings, and Katherine S. Rowe).
We are thrilled that we were able to support our colleagues in this multi-year effort by this highly knowledgeable team. We were pleased when Drs. Friedman and Underhill reached out to us to help realize their vision in sponsoring the publication of this important primer. SMCI, through funds dedicated to medical education, was able to cover the publication cost of this primer.
You may also wish to view the recent SMCI webinar by Dr. Rowe that has useful information on ME/CFS pediatrics https://www.youtube.com/watch?v=_WqGmHpL6MI