(ME and FM) through education, research, support and advocacy.
The National ME/FM Action Network is a Canadian, registered charitable organization of volunteers since 1993, dedicated to spreading awareness for Myalgic Encephalomyelitis & Fibromyalgia.
07/28/2025
Yes, You Are ‘Disabled Enough’
By: Christina Irene
The author points out there are varying degrees of being disabled but that does not exclude anyone with a disability.
Christina quotes the Centers for Disease Control & Prevention (CDC) that being disabled is defined as when one’s disability “significantly impacts one’s daily activities.”
To read Christina’s article, please go to:
"It doesn't matter if some people have it 'worse.'"
07/14/2025
ICanCME 2025 New Frontier ME Discovery Grant Program/ Subventions à la Découverte Nouvelles frontières EM
Funding Opportunities Home Research Funding Opportunities RESEARCH What We Support Network Core Projects Funding Opportunities New Frontiers ME Discovery Grant Program Awards External Grant News Selected Publications New Frontier ME Discovery Grant Program Call for Proposals: 2025-2025 The overarchi...
06/30/2025
Summer 2025 Newsletter - Quest 146
We are pleased to bring you the Summer 2025 edition of our Quest newsletter.
In this issue:
• CRPD Review Update
• Parliament Hill Events
• Winnipeg Free Press writes about ME
• CareNow Ontario’s Awareness Day Message
• FM Study Update
• Analyzing Disability
• What I Wish I’d Known the Day Dream and Disability Collided
Summer 2025 Newsletter - Quest 146 We are pleased to bring you the Summer 2025 edition of our Quest newsletter. In this issue: RPD Review Update Parliament...
05/30/2025
What I Wish I’d Known the Day Dream and Disability Collided
By: Katie D.
Katie states that she had a dream career until she became disabled. She says that through time she has learned what she wished someone had told her about the things she was going to go through at the beginning of her disability.
Katie shares what she has learned over the years as she hopes she can help others to understand they’re not alone and what they’re going through is a part of healing.
To read Katie’s story, please go to:
"1. You are not alone."
05/27/2025
Winnipeg Free Press
Sick and tired
More than 20,000 Manitobans suffer from ME/CFS,
A long-term chronic disease
Silenced Symptoms
By: AV Kitching
May 26, 2025
The debilitating condition ME/CFS is characterized by an overwhelming lassitude, extreme tiredness that can see patients confined to their bed for hours on end or housebound for an indefinite period.
05/19/2025
What You Don’t See as I Live With an Invisible Illness
By: Charis Hill
Charis relates how people perceive her as being a healthy individual and how she manages to give that impression.
In her story, Charis is sharing how she really feels. When she does let someone know that she’s ill, she shares how their reactions are the reason she fakes being healthy.
To read Charis’ story, please go to:
"I want to be seen for who I am."
05/11/2025
May 12 International ME/FM Awareness Day
May 12th was chosen as International ME/FM Awareness
Day because it is Florence Nightingale’s date of birth.
Florence Nightingale was born on May 12, 1820 in
Florence Italy and died on August 13, 1910. She was a
British nurse, statistician, and social reformer who was
put in charge of nursing British and allied soldiers in
Turkey during the Crimean War. Nightingale wandered
the wards at night with a lamp and became known as
The Lady with the Lamp as she provided support and
personal care to the wounded soldiers.
In May 1855 Florence Nightingale began the first of
several excursions to Crimea. However, shortly after
arriving, she fell ill and experienced a slow recovery. It
was thought she had brucellosis. She experienced some
recovery but suffered the lingering effects for 25 years,
confining her mostly to her bed because of severe chronic
pain as well as suffering from exhaustion.
Florence Nightingale’s greatest achievements are centred
around creating social reform in health care and nursing.
Due to Nightingale’s statistical data and analysis, a
Royal Commission was established on her findings
which resulted in marked reform in the military medical
and purveyance systems.
Her Notes on Nursing: What It Is and What It Is Not has been continuously published
since 1859.
(Lydia Neilson and the late Tom Hennessy started May
12th International Awareness Day back in the early 1990’s)
05/09/2025
The Invisibility Cloak I Wear as a Disabled Person
By: Dr. Amy Kenny
Dr. Kenny relates what it’s like to be a disabled person who sometimes looks disabled and at other times doesn’t.
Dr. Kenny tells her story on how differently she’s treated and the mixed reactions she experiences.
To read Dr. Kenny’s story, please go to:
"If I perform my pain, will it seem more real to you?"
04/25/2025
What the F in FOMO Stands for
When you have Debilitating Chronic Illness
By: Naomi G.
Naomi relates that she doesn’t use the term “Fear of Missing Out” (FOMO) as she explains she doesn’t fear it but knows she is.
Naomi has severe ME (Myalgic Encephalomyelitis) and in her story she outlines what goes on in her daily life.
To read Naomi’s story, please go to:
"I know that I'm missing out."
04/11/2025
NOTICE:
2025 IACFS/ME Conference Changed to Virtual Format!
Abstract and Workshop Submission Deadline
Extended to May 19, 2025
Dear IACFS/ME Members and Supporters,
Thank you to all everyone who participated in our recent survey! We also want to thank Dr. Nancy Klimas, Dr. Irina Rozenfeld and the staff at Nova Southeastern University along with our sponsors for their dedication, effort, and time helping us plan this conference.
Based on your responses and comments, we have decided to switch this year's conference from an in-person to an all-virtual format. We believe this change will help those facing funding, travel, and other challenges. Because of the switch to a virtual format, the deadline for abstract and workshop submissions will be extended to May 19, 2025. Submit your work here!
In the future, we will be sharing more information about how to attend and participate in the conference. The format will be similar to our 2022 conference, when we successfully used a combination of the Zoom and Virtual Poster Session platforms. For general information about the conference, please see this webpage. If you have any questions, e-mail us at iacfsmeorg@gmail.com.
We recognize that seeing your colleagues and meeting new people is a valuable aspect of in-person conferences. Towards this end, the Board, NSU staff, and our sponsors will be collaborating to create experiences that promote attendee interaction.
Have you been to a virtual conference where the interactive components were superb? Do you have ideas for how to promote engagement among attendees? Share them with us via this 1-item Google form.
Thank you for your attention and we look forward to you participation in the Conference!
IACFS/ME
International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis
International Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (IACFS/ME) 17th Research and Clinical Conference October 22 – 25, 2025 Nova Southeastern University, Davie Campus Miami/ Fort Lauderdale, Florida USA …
04/08/2025
The Challenge of Explaining How I Feel as Someone with CFS/ME
By: Emma England
Emma is a wife and a mother of a 3 year old son and has been living with ME for 5 years. Before her illness, she was a qualified fitness instructor.
In this article, Emma relates how ME affects an individual on a daily basis. She also explains of how one looks does not define how one feels which is an extra burden to carry for those who have an invisible illness.
To read Emma’s story, please go to:
"People may see me and think I look absolutely fine, whereas on the inside I am dealing with a debilitating chronic illness."
03/24/2025
Spring 2025 Newsletter - Quest 145
We are pleased to bring you the Spring 2025 edition of our Quest newsletter.
In this issue:
Redesigning ME Health Care
The Story
The NICE Guidelines for ME
Changes Needed to the Health System.
The Scottish Study
Survey Findings
Observations
Lessons for Canada
Redesigning Primary Care
The Federal Election
Remembering Dr. Byron Hyde
President Awarded Coronation Medal
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Founded in June 1993, The National ME/FM Action Network is a Canadian registered charitable organization dedicated to Myalgic Encephalomyelitis and Fibromyalgia. (ME/FM) through research, information, advocacy and support.
ANNUAL MEMBERSHIP: $30.00 which includes our quarterly newsletter ‘QUEST’ as well as email updates on issues of importance.
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QUESTION: Why is the Canada Goose in the logo of the National ME/FM Action Network?
ANSWER: When the Canada Geese fly South for the winter, they fly in "V" formation. As each bird flaps its Wings, it creates an Uplift for the bird immediately following. By flying in "V" formation, the whole flock adds at least 71% greater flying range, than if each bird flew on its own.
Geese honk from behind to Encourage those up Front to keep up their Speed. Please remember that none of us can go it alone, we need your encouragement in the manner that you are able to do so. For some it may be financial by becoming a member, for others it may be helping of another sort. All we ask is that you help in whatever manner you are capable of so that we can keep up our Speed.
