A new primer focusing on the pediatrics aspect of ME/CFS was recently accepted for publication in the Journal Frontiers in Pediatrics. The work was the vision of colleagues at the New Jersey ME/ CFS Association who assembled a team of experts to develop this material. 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, and a member of the SMCI Research Advisory Council, 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 on this occasion, we were able to support our colleagues in this commendable, multi-year effort by Drs Ken Friedman, Alan Gurwitt, Rosemary Underhill, Peter Rowe and the whole team. We are humbled that Drs. Friedman and Underhill reached out to us to help realize their vision in sponsoring the publication of this all too important primer. SMCI, through funds dedicated to medical education, was able to cover the publication cost of this primer. An embargo is put in place until the official publication date, at which time we will share the manuscript and possibly hold a Q&A session with the authors to explain the nuances and help in its correct interpretation by patients and the healthcare community.
You may also wish to consult the recent SMCI webinar by Dr. Rowe that has useful information on ME/CFS pediatrics https://www.youtube.com/watch?v=_WqGmHpL6MI