- Last Updated: 21 August 2019 21 August 2019
In this month's newsletter, a new course for school nurses (and social workers and counselors), a chance to help our community win a $100,000 prize to fund a research conference, and a chance to contribute to a journal article, plus some reminders about upcoming events. Read on for all the details.
Exciting New Continuing Nursing Education Course for School Nurses (and Social Workers and Counselors)!
The Northeastern University School Health Academy (NEUSHA) presents the online program "Why Can't This Child Get to Class? Learn how ME/CFS keeps youth from attending school." The program features experts Dr. Peter C.Rowe (Pediatrician, Director, Children's Center Chronic Fatigue Clinic at John Hopkins, and Professor of Pediatrics) and Lisa Hall (RN, Northampton Integrative Medicine) discussing an illness and disability that keeps afflicted children from attending school for months or even years at a time: ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome), a disease the Centers for Disease Control calls America's hidden health crisis. The program also features stories from parents of children who have ME/CFS. The program is accredited by the American Nurses Credentialing Center (ANCC) -- nurses anywhere in the country can earn 3.25 hours of continuing nursing education credit. Social workers and school counselors in Massachusetts can earn Professional Development Points (PDPs). The cost is $25. Click here to register for this program. If you know a school nurse, social worker or counselor, here is a flyer to give them.
This online program is the culmination of many months of effort by NEUSHA and volunteers from our association who organized two in-person school nurse education events, as well as the online course. Huge thanks to Kathy Hassey, Jenny Gormley and Lindsay Hawthorne from NEUSHA who pushed this effort through and to Cheryl Boese, Mass ME/CFS volunteer, who spearheaded the organizing. We also deeply appreciate the time that Dr. Peter Rowe and Lisa Hall spent developing and presenting medical material, and the efforts of the parents and kids who told their stories in person or by video -- Susan Buckley, Jehan Keziere, Kathy Detwiler, Denise Lopez-Majano and Amy Mooney.
Help “Advances in ME/CFS Research and Clinical Care” win the Frontiers Spotlight Award!
Advances in ME/CFS Research and Clinical Care, a series of 24 papers on ME/CFS published in 2018-2019 in the online (open access, peer-reviewed) journals Frontiers in Neurology and Frontiers in Pediatrics, is in the running to win a $100,000 prize! The prize money must be used to fund a scientific conference on the topic. If it wins, Ken Friedman, the topic editor, has indicated he will donate the money to the IACFS/ME to help fund a future International conference!
The editors of Frontiers determine the winner of the prize; there is no nomination process. The most active, collaborative and impactful Research Topics from the last year are shortlisted and then the Jury, drawn from members of the Frontiers Editorial Board, is tasked with choosing the final winner. Finalists are selected and judged on scientific and editorial excellence, international reach, subject novelty, and interdisciplinarity of their Research Topic.
An important factor is the interest the topic generates around the world, based on article views and downloads, citations, and international reach. We can help by viewing/downloading articles, and encouraging others to do so, especially viewers outside the U.S.
It also helps to post article links on Facebook or Twitter or Snapchat, retweet, and discuss in blogs and on Reddit. All these metrics are tracked and count toward the impact score.
For a complete list of papers with links, visit https://www.frontiersin.org/research-topics/7718/advances-in-mecfs-research-and-clinical-care#articles. This special issue was edited by Drs. Kenneth Friedman, Cindy Bateman, Alison Bested and Zaher Nahle.
The papers cover a wide variety of topics in ME/CFS research. Find several that you are interested in and click away!
- A brief history of the struggle for recognition of ME/CFS as a disease, and the struggles to establish ME/CFS research and clinical care
- Identifying the cause or trigger(s) of ME/CFS
- Case definition: What symptoms best characterize the disease? What symptoms are mandatory to diagnose ME/CFS? How can we make diagnosis as easy as possible for the clinician?
- Methodologies for validating a ME/CFS diagnosis
- A new method to determine the number of individuals within a given population who suffer from the disease
- A sampling of current, ongoing ME/CFS laboratory research: microbiome, the role of neuroinflammation and cytokines, using a bio-bank to study tissue abnormalities
- Clinical research
- Challenges of providing healthcare to the ME/CFS population
- Special needs of pediatric and adolescent patients
Last year’s winner received more than 80 citations, 70,000 views and 9,000 downloads, and one of the papers was featured in The Washington Post. So far, the ME/CFS topic has nearly 150,000 views.
We know that Dr. Anthony Komaroff’s recent paper on ME/CFS in the Journal of the American Medical Association was one of the top five in JAMA in July, so there is great interest right now in ME/CFS. Let’s help publicize these papers and generate even more interest!
Contribute to an Article in the Journal WORK: A Journal of Prevention, Assessment and Rehabilitation (IOS Press)!
Bobbi Ausubel is working with Amy Mooney on an article for a special issue on ME/CFS in the journal WORK. Here is her request:
I am seeking 10 mothers/fathers/partners of those with ME/cfs to write 1 paragraph (or 2 or 3) for an article to be assembled with many short paragraphs by different caregivers.
You might include:
- what you might say to an Occupational Therapist (OT) or Physical Therapist (PT) or other health worker who comes to your home (or you visit at their office) in preparation for an appointment with your pwME/cfs. (e.g., My xxxxx has MCS so no perfumes and scents; have you seen Unrest film as I requested?; are there any mild useful exercises that will not further injure? Would you read this article? Will you believe what my pwME says? Can you be kind and listen well? )
- Does your pwME have an occupation? (student, writer, mother, former occupation, etc.) Would they consider adaptation help from an OT?
- What it is like to be a caregiver? (please include a description of some of your activities, e.g., assisting walking, attending medical appointments, driving, cooking, showering, house cleaning, shopping, listening, arguing with teachers. (Include both positive and negative aspects, and emotional ones, if you wish.)
- Do you have an occupation (caregiver, parent, theater director, plumber, etc)? Might an OT help you in your caregiving?
- Have health workers in any area been of help/not help to you in past?
- Anything else you wish to say about anything.
Amy Mooney advises: Occupational therapists (OT) are allied health care providers not just found in the traditional rehabilitation, hospital and clinic facilities but also (to name a few) in schools, community centers, home health care, mental health sites and assessing work site safety. OTs are focused on how disease, injury, impairments to the body systems will impact the individual’s occupation (mother, child, student, office worker, gardener, painter... all the occupations that one person holds) and provide treatment/adaptation/modification in order for the individual to resume meaningful life occupations
You may sign as 'Anonymous', use an alias or your true name. I, Bobbi, can edit your writing or give it to someone else who can edit it, so write freely if you wish, without worry. Perhaps we can use this article for other journals as well.
Please submit by August 25.
Parent of pwME, Co-Founder FFAME (Family Friends Allies of ME)
650-743- 4212 cell
bobbi dot gloria dot ausubel at gmail dot com
Mark Your Calendars!
Monday, September 16th, 3-4 pm: CDC ME/CFS Stakeholder Engagement and Communication (SEC) Conference Call. Participants can either call in using the following information:
- Call number: 1-888-989-4409
- Participant Code: 8773805
- or join the meeting using the webinar format by clicking the link, or copying and pasting it into your browser: https://adobeconnect.cdc.gov/r4wnwwqqzvs0/
Saturday, October 26th, 1-4 pm at Newton-Wellesley Hospital: Our annual event featuring a presentation by Dr. Michael vanElzakker (MGH) on his brain imaging research and a brief business meeting.
Support the Mass ME/CFS Half Marathon Fundraiser!
Leah (your Association President) and her friends, Liz and Holly, are running the Boston Athletic Association Half Marathon on Sunday, October 13th, 2019 as a fundraiser for the Massachusetts ME/CFS & FM Association. Please support our team and give now! Your donations enable our association's work to provide support to people with ME/CFS and their families and caregivers.
Are you a healthy ally who likes to run? Join our team! You'll get camaraderie, training runs along the Charles River, and a free T-shirt. You can register for the BAA Half Marathon here. Then let us know you will join us.
Volunteer with Us!
Can you help with our activities? We particularly need assistance with organizing events, revamping our website, and maintaining our database. If you would like to volunteer, please let us know through the Contact Us form on our website. Or join our next volunteer phone call on Monday, August 26th at 12 noon (dial 712-775-8962, then enter 698-286). And, of course, we always welcome financial support for our work to improve health care and support services for people affected by ME/CFS.
Leah Williams, Association President