National ME/FM Action Network

04/26/2026

For more information on the study and to signup, please see the link below(and below is the consent form link):

https://trentu.qualtrics.com/jfe/form/SV_3I5Mz3E8yccYN3U

02/25/2026

We are pleased to bring you the Winter 2026 edition of our Quest newsletter.

In this issue:

Press Release from Fibro Winnipeg

Young people with ME - a Research Study

UK MP’s Debate ME

Scottish MP Writes About ME

Network writes to Ministers

To Canada’s Minister of Health

To Canada’s Minister of Jobs and Families

Disability Skepticism at Provincial Tribunals

Contested and Neglected: Severe ME/CFS

Germany to Fund Post-infectious Disease Research

https://www.mefmaction.com/images/stories/quest_newsletters/Quest148.pdfhttps://www.mefmaction.com/images/stories/quest_newsletters/Quest148.pdf

01/23/2026

‘Unusual’ Inflenza Symptoms: What They Mean – and When Not to Worry

A very interesting article that comes at a very important time when seasonal illnesses appear. However, it is even more of a worry if you are already chronically ill.

When to worry with a flu and when not , please go to:

Unusual flu symptoms are temporary physical or neurological sensations caused by the immune response to influenza, not serious complications in most cases.

01/16/2026

When I Don’t Feel ‘Disabled Enough’ as Someone With a Chronic Illness

By: Elaine Rush

In this article, the author relates how understanding what a disability is and it means.

Not only do healthy people but also those who are disabled have to update their understanding as not all disabilities are visible.

To read Elaine’s article, please go to:

"I imagined being judged as 'not properly disabled' or 'not disabled enough' to use the disabled facilities."

12/17/2025

A Self-Care Checklist for Surviving the Holidays

The author, Anna Lindberg Cedar that holidays can bring on a lot of emotional triggers due to painful memories, grief or challenging dynamics with family members.

Anna has created a checklist for self-care list for the holidays.

To view, please go to:

"Use this checklist to plan your self-care so that you can enjoy the upcoming holidays to their fullest."

12/08/2025

5 Ways I’m Planning to Handle the Holidays Differently This Year With Chronic Illness

By: K.M. Lang

The author has been coping with a chronic illness for nearly ten years and each year she promises herself not to let the holidays knock her down but they always do.

This year the author decided to do things differently and she is sharing what she will do this year.

To read what the author plans to do to make life easier for her, please go to:

"I’m making a change. I can’t afford to spend all of January recovering from December."

11/22/2025

The National ME/FM Action Network is pleased to bring you the Fall 2025 edition of our Quest newsletter.

In this Issue:
• Research News
• Why Isn’t Canada Investing in a New System of ME Care?
• Some Releases since May 2025
• The Network’s Redesigned Website

To view, please go to:

Fall 2025 Newsletter - Quest 147 We are pleased to bring you the Fall 2025 edition of our Quest newsletter. In this issue: Research News Why Isn’t Canada I...

11/15/2025

The Invisibility Cloak I Wear as a Disabled person
By: Dr. Amy Kenny

Dr. Kenny relates you want to camouflage yourself to get away with something illegal, but on days when one is visibly disabled, strangers may come up to you to offer unsolicited advice.

In this article, Dr. Kenny explains what is the reality for those who are sometimes visibly disabled and other times not.

To read Dr. Kenny’s article, please go to:

"If I perform my pain, will it seem more real to you?"

11/05/2025

When Chronic illness Turns you into a Spectator of Your Own Life

By: Kat Harrison

The author, Kat Harrison, was sitting in a parking lot and relating what is going through her mind and all the questions she is asking herself. A very relatable condition for anyone with a chronic illness.

In Kat’s case, she has been ill for 19 years.and she expresses her feelings and the questions she asked herself. She’s hoping by telling her story, it may help someone else also.

To read Kat’s story, please go to:

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

11/01/2025

No Evidence Supports Using Graded Exercise for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Miriam E. Tucker
October 31, 202

Studies examining the effects of activity-based interventions haven’t required post-exertional malaise as a core criterion for the now-termed ‘myalgic encephalomyelitis/chronic fatigue syndrome.’

10/30/2025

ME/FM/Lyme/Long COVID Patient Healthcare Experiences and Priorities in BC

This report, conceived and commissioned by four BC organizations, presents the results of an on-line survey of ME, FM, Lyme and Long COVID patients in BC conducted during the winter of 2024-25.

The survey asked people to give their perspectives on strengths and weaknesses of the existing health care system and to identify opportunities for improvement. Just over 1,000 people in BC participated in the survey.

The survey shows that respondents have had some good and many bad experiences in the health system. Bad experiences included being dismissed, disrespected or disbelieved, getting wrong diagnoses or harmful treatments, and receiving little help with financial applications. It is notable how appreciative the respondents were of good experiences, even when the experience was as basic as being believed.

Here are three specific take-aways from the survey:

• Despite all their bad experiences, the respondents said that they want one-on-one care from doctors. People understand that they need individualized, on-going, informed medical care.

• The health system has a role to play in helping patients access financial and social programs. For some patients, this is very important.

• Emergency rooms can be very difficult for these patients.

Full report click 2025_Community_Survey_Report This report, conceived and commissioned by four BC organizations, presents the results of an on-line survey...

10/21/2025

7 Lessons for Recovering Your Spirit After a Health Crisis

By: Carolina Vergara M.

Caroline relates that when you’re chronically ill, everything changes in your life, including your habits. Something much more important to you that’s not your body.

In this article, the author explains what she has learned about the importance of staying you and what that means.

Please remember that there is no wrong way to help you manage a chronic illness but only what will work for YOU.

To read Caroline’s story, please go to:

"These experiences are not making me lose parts of myself, they are only changing me."