- Last Updated: 27 October 2018 27 October 2018
The long-awaited Pediatric ME/CFS Primer, written by an international group of pediatric ME/CFS expert clinicians, is now published and freely available.
Lead author Peter Rowe states, “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.”
Not only does the Primer contain a wealth of practical clinical advice, it also includes facts sheets and sections on working with schools and a sample physician’s letter to the school, authored by Faith Newton, Ed. D. It is a valuable guide for health care providers, parents and families, and school personnel.
Front. Pediatr., 19 June 2017 | https://doi.org/10.3389/fped.2017.00121
"Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer"
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
Faith Newton Ed.D., Department of Education, Delaware State University, Dover, DE, USA contributed Section “The School System” and Appendix D.
Evan Spivak, DDS, Department of Pediatric Dentistry, Rutgers School of Dental Medicine, Newark, NJ, USA contributed Section “Oral and Dental issues.”
Appendix F is based upon “Considerations Prior to Surgery for Adult ME/CFS Patients” by Dr. Charles W Lapp MD, Director, Hunter-Hopkins Center, Charlotte, NC, USA, with permission.
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex disease that affects children and adolescents as well as adults. The etiology has not been established. While many pediatricians and other health-care providers are aware of ME/CFS, they often lack essential knowledge that is necessary for diagnosis and treatment. Many young patients experience symptoms for years before receiving a diagnosis. This primer, written by the International Writing Group for Pediatric ME/CFS, provides information necessary to understand, diagnose, and manage the symptoms of ME/CFS in children and adolescents. ME/CFS is characterized by overwhelming fatigue with a substantial loss of physical and mental stamina. Cardinal features are malaise and a worsening of symptoms following minimal physical or mental exertion. These post-exertional symptoms can persist for hours, days, or weeks and are not relieved by rest or sleep. Other symptoms include cognitive problems, unrefreshing or disturbed sleep, generalized or localized pain, lightheadedness, and additional symptoms in multiple organ systems. While some young patients can attend school, on a full or part-time basis, many others are wheelchair dependent, housebound, or bedbound. Prevalence estimates for pediatric ME/CFS vary from 0.1 to 0.5%. Because there is no diagnostic test for ME/CFS, diagnosis is purely clinical, based on the history and the exclusion of other fatiguing illnesses by physical examination and medical testing. Co-existing medical conditions including orthostatic intolerance (OI) are common. Successful management is based on determining the optimum balance of rest and activity to help prevent post-exertional symptom worsening. Medications are helpful to treat pain, insomnia, OI and other symptoms. The published literature on ME/CFS and specifically that describing the diagnosis and management of pediatric ME/CFS is very limited. Where published studies are lacking, recommendations are based on the clinical observations and practices of the authors.
- Last Updated: 15 January 2020 15 January 2020
We are deeply saddened to bring you news of two deaths in our Massachusetts ME/CFS community: Elizabeth (Libby) Potter and Heather Colman-McGill.
- Last Updated: 18 July 2020 18 July 2020
We are excited to announce a new strategic plan for the Massachusetts ME/CFS & FM Association! We have spent the last year crafting a bold, ambitious and inclusive plan to guide our work in supporting people with ME/CFS and FM and their families, educating health care providers, advocating for social services and building a sustainable future for MassME. A big thank you to those who were introduced to, and who helped refine, the strategic plan during the small group meetings we held this past spring. And a big "Welcome!" to some of our new members who are already benefiting from initiatives described in the plan, such as our expanded support group program. A summary of the plan is included below. For those of you with the energy and interest to delve into the details, please find the full strategic plan here. Let us know what you think!
- Last Updated: 19 October 2019 19 October 2019
Registration is now open for our Annual Event on Saturday, October 26th, 2019 from 1 to 4 pm at Newton-Wellesley Hospital, featuring Dr. Michael VanElzakker of MGH/Harvard Medical School. Please join us for a brief business meeting, a research presentation by Dr. VanElzakker, an update on the Harvard ME/CFS Collaboration, and a chance to meet fellow members of the Association. We look forward to seeing you! Register here.
Investigating ME/CFS at the intersection of the nervous and immune systems
Dr. Michael VanElzakker of MGH/Harvard Medical School
When: Saturday, October 26th, 2019 1:00 PM to 4:00 PM
Doors open at 12:30 p.m. for check-in
Shipley Auditorium, Bowles Conference Center
Newton Wellesley Hospital
2014 Washington St.
Newton, MA 02462
Park in the lot near the West (Main) Entrance. Directions from the parking areas to the Auditorium can be found here.
Join or renew your membership at the event! This program is open to the public and free to members of the Association, journalists, researchers and health care professionals; $15 voluntary donation for non-members.
Michael VanElzakker, PhD is a research fellow in the neurotherapeutics division of Massachusetts General Hospital / Harvard Medical School.
Dr. VanElzakker will discuss some challenges and opportunities in using brain scans to study communication between the immune and nervous systems. He will describe two ongoing studies that seek to elucidate autonomic dysfunction and possible neuroinflammation in ME/CFS. He will also give an update on the OMF-funded Harvard ME/CFS Collaboration.
Download the event flyer here! Please distribute widely.
- Last Updated: 18 July 2020 18 July 2020
|Massachusetts ME/CFS & FM Association Stands Against Racism|
The Massachusetts ME/CFS & FM Association unequivocally asserts our commitment to standing against racism in all its forms and standing with our black community members. Systemic racism -- and specifically systemic and repeated violence against black Americans -- is an urgent crisis that requires an equally urgent response. We are sickened and heartbroken by the senseless murders of George Floyd, Breonna Taylor, Tony McDade, Ahmaud Arbery, and countless others. We want to be explicitly clear: Black lives matter.
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