Run/Walk/Roll for ME and the Long Haul with Team MassME at the McCourt Foundation's 2024 Boston Waterfront 5K on June 9

Copy of 5K JoinDonate Graphic for website

 

Run/walk/roll for ME and the Long Haul!

Join Team MassME at the McCourt Foundation's 2024 Boston Waterfront 5K on June 9

Run for ME! Run for the Long Haul! Help us to raise awareness of ME/CFS and Long COVID, and to fund MassME's ongoing information and support programs. 

 

Register as a participant

We know that 5K is a marathon — or beyond — for many with ME or LC. Ask healthy friends or family members to run on your behalf with Team MassME using this link. The 5K course will be accessible to wheelchairs, including motorized devices, and anyone needing assistance to participate can be accompanied by up to two support members who do not need to register. 

The registration process is simple. The fee to register is $40 (plus a $4 processing fee).*  Each participant will have their own fundraising page associated with Team MassME.

 

Support our team

You can donate at our main team page, or choose one of our team members to support their efforts! All donations will help us continue to bring you information and support programs. Together, we are stronger!

If you have any questions, please contact Susan Buckley.

*If the fee is a financial hardship, please let us know..

 

You can support Team MassME by clicking here. No amount is too small!

 

 

Sunday Conversations CANCELLED for 9/17

Due to a family emergency, our speaker for the Sept 17 Sunday Conversation, Dr. Jason Maley, has had to cancel. Dr. Maley has graciously offered to reschedule for a future Sunday Conversation.

Please join us on Saturday, Oct. 28 1 pm ET, for our MassME Annual Event, ME/CFS: Changing the Narrative, with journalist and science writer Ed Yong as our featured speaker. This is a virtual event and is free for members. Registration for this event will be open soon.

Sunday Conversations will resume in November.

We are sorry for the inconvenience and send best wishes to Dr. Maley.

Sunday Conversations - January 21, 2024

"It's not 'All In Your Head' "
Multi-Modal Healing with Judy Tsafrir

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


Judy Tsafrir, MD

When a patient consults a physician and reports symptoms that refer to multiple unrelated organ systems which do not fit with known patterns or conditions, and when the laboratory tests that are conventionally run do not reveal any abnormalities, the conclusion is reached that they should see a psychiatrist. They are told that they are suffering from stress; that they are depressed or anxious. The implication is that their condition is psychosomatic; meaning that their emotions are manifesting as physical symptoms. This is a very invalidating experience that adds insult to injury.

Read more: Sunday Conversations - January 21, 2024


New Pediatric ME/CFS Primer is published

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