Birthing the Young Persons ME/CFS Primer
Kenneth J. Friedman, Ph.D.
It was the next to the last day of a short trip to the east coast of Florida. The weather had not been cooperating. No morning walks on the beach. But the forecast for the morning of June 2, 2011 held promise, and so my wife and I made plans to be on Dania Beach by 9 AM. The plan went smoothly with the ride to the beach under blue skies, a timely entrance into the parking lot, the purchase of 2 hours of parking at the kiosk and our sandals off with toes in the sand before 9:00 AM. My cell phone rang. It was Billie Moore, fellow Board Member of the New Jersey Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Association. She was extremely upset: her son, a victim of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) for many years, had died suddenly the day before. She had two requests of me: (1) obtain the information needed for the medical examiner to preserve her son’s tissues, for donation to a biobank, during the autopsy to be performed that morning, and (2) write a book to improve diagnosis and treatment of ME/CFS in children so that no parent would ever lose their child to this disease again.
The first order of business was to obtain the information needed to preserve Eric’s tissues for biobank donation. We turned away from the beach and walked back to the car. My wife drove as I worked the phone. Time was of the essence. I connected with Dr. Nancy Klimas at the start of her clinic day. She agreed to quickly get the necessary information to Billie Moore.
The other commitment would take longer. In June, 2011, we were one year into writing a diagnosis and treatment manual for ME/CFS in adults, under the auspices of the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME). It would take another year to produce the first edition of that work, and another two years to produce the revision that addressed concerns expressed after publication of the initial offering. In April 2014, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Primer for Clinical Practitioners was put to bed. I, Dr. Alan Gurwitt and Dr. Rosemary Underhill set about organizing an international writing group of clinicians and researchers to write the companion piece for the diagnosis and management of ME/CFS in young persons. The group met for more than two years via biweekly conference calls, exchanging drafts and subsequent revisions by email. Text was accepted as final only when all agreed to it. To ensure complete coverage, we asked Dr. Faith Newton to submit material for an educational component, and Dr. Evan Spivack to submit material for dental considerations.
Once written, I did not want Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Diagnosis and Management in Young People: A Primer to suffer the same fate as the adult primer: the U.S. federal government refused to cite or link to ME/CFS: A Primer for Clinical Practitioners because it had been self-published and had not undergone peer review. I requested that the authors of the young persons primer grant me time to identify a peer-reviewed journal willing to publish our monograph in its entirety while still permitting the later production of hard copies of the work as a monograph. We are extremely fortunate that Frontiers in Pediatrics accepted our complete manuscript, subjected it to peer review, and published it online. We are also fortunate that the Solve ME/CFS Initiative agreed to cover the cost of publishing our monograph in Frontiers in Pediatrics.
We are currently preparing a print version of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Diagnosis and Management in Young People: A Primer. We will add a Table of Contents, an Index, and identify an on-demand publisher so that anyone who wishes to obtain a hard copy may do so at minimal cost. We are also making plans to aggressively market our young persons primer to appropriate healthcare organizations.
The loss of a child leaves an irreparable hole in the hearts and lives of the parents, described as “an aching limp” in the October 31, 2016 edition of the New York Times. (https://www.nytimes.com/2016/10/31/opinion/dealing-with-the-death-of-a-child.html) That essay asks how one goes on after the death of a child? “By thinking of the ones you save.” To the parents of Eric and Casey, and all the other parents of children who died because of ME/CFS, may the publication of this definitive work, intended to guide healthcare professionals in providing prompt diagnosis of the disease, and management of its symptoms, offer the solace of knowing that their children’s lives have wrought this work which will hopefully save the lives of others. To the healthcare providers who treat the young, know that in your practices you will encounter patients with ME/CFS. Their illness is real. May Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Diagnosis and Management in Young People: A Primer provide you with the tools to efficiently reach diagnosis and effectively manage the symptoms of their illness. May this primer encourage healthcare professionals to support and encourage young people with ME/CFS to adjust to their new, altered lives, previously unimagined.
Thread where the contents of the primer are being discussed in detail:
http://forums.phoenixrising.me/index.php?threads/pediatric-primer.52307