Sunday Conversations - April 21, 2024

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Last Updated: 01 May 2024 01 May 2024

“Got Mold? How Our Homes Impact Our Health”

Sunday, April 21, 2024, 4 p.m. Eastern Time

Michael Rubino

Michael Rubino is the co-founder and chair of Change the Air Foundation, a non-profit giving every person the knowledge, resources, and support to achieve better health by breathing safe indoor air. In this edition of Sunday Conversations with MassME, Michael discussed air quality, mold, bacteria, symptoms of living with water damage, tests for mold and air quality, and the steps we can take to make our homes safer.

Read more: Sunday Conversations - April 21, 2024

Young Adult Support Group - Spring 2024

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Last Updated: 29 March 2024 29 March 2024

Click here to register for the Spring session of our Young Adult Support Group

New Pediatric ME/CFS Primer is published

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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.

View the Pediatric Primer online

Download the Pediatric Primer

REVIEW ARTICLE

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.

Abstract

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.

Read more: New Pediatric ME/CFS Primer is published

MassME Letter to NIH RECOVER Clinical Trials

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Last Updated: 07 April 2023 07 April 2023

 RECOVER_Trial_letter_re__PEM.pdf

Young Adult Support Group for those with ME/CFS, FM, Lyme, Long COVID, and Chronic Illness - Winter 2024

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Last Updated: 05 February 2024 05 February 2024

Young Adult Support Group for those with ME/CFS, FM, Lyme, Long COVID, and Chronic Illness

*Please Note: Due to professional licensing issues, you must be a Massachusetts resident to attend this group

Join us on Thursday nights @ 7:00 pm and Tuesday afternoons @ 3:30 pm ET.

This drop-in Virtual Support Group is interactive and provides a safe space for patients to share stories and experiences, ask questions, and offer one another support.

There is one registration for the entire session.  Once registered, you are welcome to attend as many meetings as you like.

Winter Session Dates:

Thurs.  Jan 18th at 7pm
Tues.  Jan 30th at 3:30pm
January monthly Topic: Communicating about disability and chronic illness 

Thurs. Feb. 15th 7pm
Tues. Feb. 27th 3:30pm
February monthly topic: Navigating dating/romantic relationships 

Thurs. March 7th 7pm
Tues. March 19th at 3:30pm
March monthly topic: Self advocacy/accommodations for disability 

This group is free for members, with any donations to offset costs welcome. A contribution of $25 or more will include annual membership.  

What age is Young Adult?

Anyone over the age of 18 who self-identifies as a young adult, either through age or via the life challenges typically experienced by this population. Relevant topics of this group are challenges with college/higher education, starting a career, housing challenges, dating and/or starting a family, and social challenges.

To Register, please fill in the form or confirm your pre-filled information below, and then click the Register button.