National ME/FM Action Network

09/20/2025

When Chronic Illness Turns You Into a Spectator of Your Own Life

By: Kat Harrison
Kat has a chronic illness and also has a rare disease for 19 years.

She learned that there two modes of existence i.e. either in an acute, heightened state or in a stable routine state. As a result, she feels like a ‘professional patient’ and asked herself how to break out of that state and pinpoint what she is actually experiencing.

In order for her to pinpoint what she’s actually experiencing and why it matters, she has put together questions which helps her to live her life to the best of her ability.

To read Kat’s story, please go to:

"I am ridiculously tired of watching my life like it's a movie."

09/04/2025

When It Feels Like You’re Starting Over With Chronic Illness

By: Annie Basil

Annie advises not to be afraid to start over because this time you wouldn’t be starting from scratch. She points out that the fear of not knowing what will happen next terrified her as she was afraid she would never recover.

In Annie’s article she relates that due to her husband’s job, she had to move from an area where she had developed ways of coping that were not available in her new location.

To read Annie’s article about how she copes and handles obstacles in her way, please go to:

https://themighty.com/topic/chronic-fatigue-syndrome/starting-over-cfs-chronic-illness/

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"Will the life I've struggled to rebuild come crashing down again?"

08/26/2025

What I Actually Mean When I Say I’m ‘Tired’

By: Sarah Scarisbrick-Rowe

Sarah was diagnosed with myalgic encephalomyelitis and since then that word has become a constant in her vocabulary.

In this article, Sarah explains what ‘tired’ means to her.

To read Sarah’s story, please go to:

"For me it has almost become a code word, or shorthand, for the millions of other words I keep trapped in my mouth."

08/17/2025

The High Physical and Psychological Cost of Chronic Illness Burnout

By: Amelia Blackwater

Most of us know about being burned out in one’s professional life when you are working for a living.

Amelia relates that it’s important to recognize burn-out when you are chronically ill as it is a special kind of burnout which can be extremely dangerous to a person

In this article, the author explains that this type of burnout is a state of emotional, physical and mental exhaustion by dealing with chronic illness and medical issues which can put one’s life in jeopardy.

To read this article, please go to:

"I stopped fighting to get the care I needed until I eventually ended up in the emergency room."

08/08/2025

8 Ways Imposter Syndrome Shows Up in Life With Chronic Illness

By: Sarah Wells

Sarah’s article is rather lengthy but at the same time it expresses very much what an individual with a chronic illness goes through.

Sarah relates how someone with a chronic illness or disability experiences different stages of a chronic illness. At first, juggling work and hiding being ill from everyone.

Then there comes the time that the doctors tell you that all your blood test results are normal which makes you feel like a phony. We’ve been made to believe that if you test negative then it must be all in your head. This in turn makes one not only doubt oneself but also that you must be imagining your symptoms.

No matter how long you may have been ill, Sarah’s article validates what a person with a chronic illness or disability goes through.

To read Sarah’s article, please go to:

Have you experienced this?

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)