National ME/FM Action Network

National ME/FM Action Network The National ME/FM Action Network is a Canadian, registered charitable organization of volunteers since 1993, dedicated to spreading awareness for Myalgic Encephalomyelitis & Fibromyalgia.

(ME and FM) through education, research, support and advocacy. A Canadian, registered, non-profit organization founded in 1993 by Lydia E. Neilson, M.S.M., Chief Executive Officer, and dedicated to advancing the recognition and understanding of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Syndrome (FMS) through education, advocacy, support, and research. Our our c

(ME and FM) through education, research, support and advocacy. A Canadian, registered, non-profit organization founded in 1993 by Lydia E. Neilson, M.S.M., Chief Executive Officer, and dedicated to advancing the recognition and understanding of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Syndrome (FMS) through education, advocacy, support, and research. Our our c

Operating as usual

It’s Okay If You Struggle to Accept Your Health ConditionBy: Kelly DouglasKelly relates how much pressure we put on ours...
09/14/2021
It's OK If You Struggle to Accept Your Health Condition

It’s Okay If You Struggle to Accept Your Health Condition

By: Kelly Douglas

Kelly relates how much pressure we put on ourselves when we have a health condition. We feel that if we give in to our emotions and acknowledge how we are really feeling, we’re practicing self-pity.

In this short article, Kelly reminds us that in order to heal, you first have to acknowledge your real feelings, no matter what they are. By understanding that you need to grieve the old self before you move on to the new self, you have to be able to acknowledge your grief and how it makes you feel.

To read Kelly’s story, please go to:

https://themighty.com/2021/09/struggle-accept-health-chronic-illness-disability/

"You deserve time and space to move through every stage of grief without your own judgment of your feelings."

Riding the Wave of Our Feelings in Life With Chronic IllnessBy: Eleni StephanidesEleni relates how we try to avoid our n...
09/10/2021
Riding the Wave of Our Feelings in Life With Chronic Illness

Riding the Wave of Our Feelings in Life With Chronic Illness

By: Eleni Stephanides

Eleni relates how we try to avoid our negative emotions although they are a natural part of life. We worry about wallowing in self-pity and never being able to get out of that state.

Elini states that much of those feelings grow through pharmaceutical companies and psychiatrists promising a quick fix with drugs before we have had a chance to understand our emotions.

To read Elini’s story, please go to:

https://themighty.com/2021/09/processing-positive-negative-emotions-chronic-illness-disability/

"Accept what you feel, then allow that wave to take you."

Dealing With the Daily Drudgery of Life With a Chronic IllnessBy: Samantha MossSamantha had to retire early from an exec...
09/06/2021
Dealing With the Daily Drudgery of Life With a Chronic Illness

Dealing With the Daily Drudgery of Life With a Chronic Illness

By: Samantha Moss

Samantha had to retire early from an executive management career due to a disabling bone disease, Rheumatoid Arthritis and a permanent colostomy. As her disabilities progressed, she started a blog called “My Medical Musings” and set up an online support forum.

Samantha wrote this story when she was sitting in the “dealing with drudgery” category and explains what every day is like for a person with a chronic illness.

It was eye-opening to see in print what we face in our lives and in our minds every day. It’s also reassuring to read how normal it is to feel that way.

To read Samantha’s story, please go to:

https://themighty.com/2021/08/daily-drudgery-chronic-illness-disability/

"It's a little like being stuck in a job you really don't like, but you don't have an easy or immediate opportunity to be able to make a change."

09/03/2021

Election Debate on Disability Issues - Online Tues Sept 7.

Dear friends

The coalition of disability organizations is sponsoring an all-parties debate on disability issues. It will take place on-line on Tuesday September 7 at 7 pm Eastern time.

For further information and to register please visit / click on:

All-Parties Candidates Debate | Wavefront Centre for Communication Accessibility

Sincerely,
NATIONAL ME/FM ACTION NETWORK
Margaret Parlor,
President

NEWS AnnouncementNICE announces next steps for ME/CFS guidelineRoundtable meeting will be held in September 2021 which w...
08/30/2021
NICE announces next steps for ME/CFS guideline

NEWS Announcement

NICE announces next steps for ME/CFS guideline

Roundtable meeting will be held in September 2021 which will include representatives from patient organizations, charities, relevant professional societies NICE and the guideline committee.

To read full announcement, please go to:

https://www.nice.org.uk/news/article/nice-announces-next-steps-for-me-cfs-guideline

Following the pause to the publication of the guideline NICE has today, 27 August 2021, announced that it is to hold a roundtable event to better understand the issues raised and determine how it can gain support for the guideline to ensure effective implementation. The meeting, which will be held i...

Interview of Dr. Leonard Jason by David Teshome.In this interview, Dr. Jason goes into much detail on how simple it coul...
08/28/2021
David Teshome interviews Leonard Jason on Long Haulers and ME/CFS

Interview of Dr. Leonard Jason by David Teshome.

In this interview, Dr. Jason goes into much detail on how simple it could be to properly diagnose for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome with proper criteria and how that could also be used for long haulers.

Dr. Teshome asked some really great questions and this particular interview is drenched with medical information and wisdom.

Definitely worthwhile watching.

Please go to:

https://www.youtube.com/watch?v=QS_2rq8CL_M

David had read some of Leonard's publications including the study regarding problems with CBT when used with patients with ME/CFS. David also appreciated the...

Mayo Clinic ProceedingsOpen AccessPublished: August 25, 2021CONSENSUS RECOMMENDATIONS https://www.mayoclinicproceedings....
08/26/2021
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management

Mayo Clinic Proceedings

Open Access

Published: August 25, 2021

CONSENSUS RECOMMENDATIONS



https://www.mayoclinicproceedings.org/article/S0025-6196(21)00513-9/fulltext

Despite myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) affecting millions of people worldwide, many clinicians lack the knowledge to appropriately diagnose or manage ME/CFS. Unfortunately, clinical guidance has been scarce, obsolete, or potentially harmful. Consequently, up to 91% of pa...

It’s Time to Talk About the Scary Misdiagnosis Rate Women FaceBy: Elizabeth Land QuantIn December 2017, Elizabeth had be...
08/21/2021
It’s Time to Talk About the Scary Misdiagnosis Rate Women Face

It’s Time to Talk About the Scary Misdiagnosis Rate Women Face

By: Elizabeth Land Quant

In December 2017, Elizabeth had been diagnosed with Fibromyalgia (FM) by a rheumatologist which she called ‘exercise depravation syndrome”. She told Elizabeth that aerobic exercise would help her symptoms as long as her heart raced a little and broke a sweat.

A week later, Elizabeth woke up facedown to her treadmill with her heart racing and not able to take a deep breath. She vowed to try even harder. In the hand-out the doctor had given her, it stated that “…..even if the pain is worse after exercise, no injury to the body occurs.” Nothing could be further from the truth.

In an effort to get better, Elizabeth went to a well-known clinic whose website advertised it worked collaboratively with many consultants and departments. However, when she told the rheumatologist about her symptoms since childhood, she instead asked whether she was traumatized as a child.

Please note that this is a rather lengthy story but emphasizes what harm a wrong diagnosis does, not only physically but mentally.

To read Elizabeth’s story, please go to:

https://themighty.com/2021/07/women-misdiagnosed-mental-chronic-illness/

"How did we get to this point in the 21st century?"

How I Found the Will to Live Again After Becoming DisabledBy: Jennifer BurgmannJennifer reached the edge of illness when...
08/19/2021
How I Found the Will to Live Again After Becoming Disabled

How I Found the Will to Live Again After Becoming Disabled

By: Jennifer Burgmann

Jennifer reached the edge of illness when she couldn’t take anymore. This is a very delicate subject that everyone understands who is chronically ill.

It is also a subject that is mostly in the minds of the chronically-ill and rarely mentioned out loud.

It’s the feeling of not having to deal with your illness daily and thinking everyone would be better off, if you weren’t here

Jennifer tells us about her struggles and the ultimate decision she had come to and had acted upon and how everything changed.

To read Jennifer’s story, please go to:

https://themighty.com/2021/08/finding-the-will-to-live-again-suicide-disability/

"I have things to look forward to, relationships to build, and goals to fulfill."

NICE pauses publication of updated guideline on diagnosis and management of ME/CFSNICE has today (17 August 2021) taken ...
08/17/2021
NICE pauses publication of updated guideline on diagnosis and management of ME/CFS

NICE pauses publication of updated guideline on diagnosis and management of ME/CFS
NICE has today (17 August 2021) taken the decision to pause publication of its updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS).

17 August 2021

The guideline recognises that ME/CFS is a complex, multi-system, chronic medical condition where there is no ‘one size fits all’ approach to managing symptoms. The causes of ME/CFS are still poorly understood and because of this there are strong views around the management of this debilitating condition.

Because of issues raised during the pre-publication period with the final guideline, we need to take time to consider next steps. We will hold conversations with professional and patient stakeholder groups to do this. We need to do this so that the guideline is supported.

NICE has used its usual rigorous methodology and process in developing this guideline but despite the best efforts of the committee, that followed these to the letter to bring together the available evidence and the real, lived experience and testimony of people with ME/CFS, we have not been able to produce a guideline that is supported by all.

We want to thank everyone who has contributed to this guideline and particularly the committee and the patient groups who have worked so diligently. However, unless the recommendations in the guideline are supported and implemented by professionals and the NHS, people with ME/CFS may not get the care and help they need.

In order to have the desired impact, the recommendations must be supported by those who will implement them and NICE will now explore if this support can be achieved.

https://www.nice.org.uk/news/article/nice-pauses-publication-of-updated-guideline-on-diagnosis-and-management-of-me-cfs

N.B. FOR QUESTIONS & COMMENTS TO N.I.C.E.

• email [email protected]

The guideline recognises that ME/CFS is a complex, multi-system, chronic medical condition where there is no ‘one size fits all’ approach to managing symptoms. The causes of ME/CFS are still poorly understood and because of this there are strong views around the management of this debilitating c...

When the Summer Sun Is Not so Fun for Those With Chronic IllnessBy: Jacob ThompsonJacob states that for him with a chron...
08/15/2021
When the Summer Sun Is Not so Fun for Those With Chronic Illness

When the Summer Sun Is Not so Fun for Those With Chronic Illness

By: Jacob Thompson

Jacob states that for him with a chronic illness, the sun is just another obstacle he needs to overcome daily.

As those with chronic illness know, temperature can make or break your day.

This article points out that ME/FM people are not alone in our struggles. There are others with chronic illness who also have to conquer the dire effect of heat.

Jacob has Lupus but like ME/FM people, his observations on what temperature extremes does echoes the ME/FM community.

To read Jacob’s story, please go to:

https://themighty.com/2021/08/summer-sun-heat-intolerance-uv-rays-lupus/

"What had once caused great exhilaration and happiness, now only brings pain and fatigue."

CHRONIC FATIGUE SYNDROME PATIENTS – IT’S TIME TO RECONSIDER OUR ATTITUDESPosted by RJGP Life | 23 July 2021The author is...
08/12/2021
Chronic Fatigue Syndrome patients — it’s time to reconsider our attitudes | BJGP Life

CHRONIC FATIGUE SYNDROME PATIENTS – IT’S TIME TO RECONSIDER OUR ATTITUDES

Posted by RJGP Life | 23 July 2021

The author is a medical student who informs us that she has had privileges of multiple specialties in a short period of time in order to determine what kind of doctor she may want to be. This article was reviewed by her Clinical Associate Professor.

She advises that among the many positive aspects, she noticed the negative attitude towards patients with a background of medically unexplained symptoms and that this negative attitude is prevalent among all specialties.

AAs part of her National Institute for Health Research internship, she conducted a short informal survey and from the responses she received, it was obvious to that the lack of medical education among doctors and medical students on ME/CFS, the participants in the survey believed that ME/CFS is primarily a psychological disorder.

To read the author’s article on what she believes must be done, please go to:

https://bjgplife.com/2021/07/23/chronic-fatigue-syndrome-patients-its-time-to-reconsider-our-attitudes/?fbclid=IwAR2MO-6jtqg_hraMZSYa5u11CHDuZGNzh43MjKvAYMxaNgbV07l08CmYuLg

Chronic Fatigue Syndrome patients — it’s time to reconsider our attitudes Posted by BJGP Life | 23 Jul 2021 | Opinion | 6 Sooyoung Lee is a FY1 in Nottingham. As a medical student, I have had the privilege of experiencing multiple specialties in a short space of time. Being a medical student can...

How to ‘Power Up’ Using Strategic Rest in Life With Chronic IllnessBy: Mike AntonacciSince Mike became ill, he had a dif...
08/07/2021
How to 'Power Up' Using Strategic Rest in Life With Chronic Illness

How to ‘Power Up’ Using Strategic Rest in Life With Chronic Illness

By: Mike Antonacci

Since Mike became ill, he had a difficult time coming to terms with how he looked at coping skills. Then one day Mike started viewing his down time from a different mindset which improved his conception of rest and what it means..

To read how Mike has found a way to cope with his chronic illness, please go to:

https://themighty.com/2021/08/power-up-rest-recharge-chronic-illness-disability/

"As a nerd with a chronic illness, this very much resonates with me."

How I’m Coping With Short-term Memory Loss After a Myalgic Encephalomyelitis [ME] DiagnosisBy: Jenna UllenboomJenna stat...
08/04/2021
How I'm Coping With Short-Term Memory Loss After a Myalgic Encephalomyelitis Diagnosis

How I’m Coping With Short-term Memory Loss
After a Myalgic Encephalomyelitis [ME] Diagnosis

By: Jenna Ullenboom

Jenna states that she has a photographic memory to the point that she could describe details and interactions in a room.

ME has affected her short-term memory which she finds hard to admit. She relates that she’s unable to retain times that have passed as more and more of her memories started to become hazy in her mid-20’s.

Jenna is now in her mid-30’s and tells us how ME’s memory difficulties has affected her quality of life and altered how she has to now deal with new information.

To read Jenna’s story, please go to:

https://themighty.com/2020/01/memory-loss-myalgic-encephalomyelitis-how-to-cope/

"It's something so new to me and incredibly difficult to admit."

Survey on vaccine availability and vaccine hesitancyDear friendsIndependent Living Canada and the ARCH Disability Law Ce...
08/02/2021
ARCH Disability Law Centre

Survey on vaccine availability and vaccine hesitancy

Dear friends

Independent Living Canada and the ARCH Disability Law Centre are conducting a survey on vaccine hesitancy and barriers to getting vaccine. The goal is to determine how people with disabilities access vaccines and gauge whether people with disabilities are hesitant to get the vaccine and, if they are hesitant, why?

This is an opportunity to share your thoughts.

The survey link can be found on the ILC website:www.ilc-vac.ca and the ARCH website:www.archdisabilitylaw.ca

If you would like a hard copy of the survey, please contact [email protected]

The survey is available in English and in French.

Margaret Parlor
National ME/FM Action Network
President

A specialty legal clinic that practices exclusively in disability rights law.

2021 IACFS/ME Virtual Conference - Aug 19-21Dear FriendsThe International Association for ME/CFS will be holding an on-l...
07/30/2021
2021 IACFS/ME Virtual Conference - International Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (IACFS/ME)

2021 IACFS/ME Virtual Conference - Aug 19-21

Dear Friends
The International Association for ME/CFS will be holding an on-line conference from Thursday August 19 to Saturday August 21, 2021.

Day 1 includes three workshops: one for clinicians, one for researchers and one for patients and the public.

Days 2 and 3 include professional and poster presentations.
T
o see program details and to register, please go to https://www.iacfsme.org/2021-iacfsme-virtual-conference/

There is a fee to attend.

Margaret Parlor
NATIONAL ME/FM ACTION NETWORK
President

2021 IACFS/ME Virtual Conference : August 19 – 21, 2021 Click to Register Now!   Join us on August 19-21, 2021 for our International Scientific Conference to be held in easily accessible virtual format. The meeting will run from 10 AM to 3:30 PM EDT (Eastern Daylight Time, New York City, Thursday...

When I ‘Play Favourites” With My DisabilitiesChristina IrenaChristina is an author/speaker/comedian with more than one c...
07/28/2021
When I 'Play Favorites' With My Disabilities

When I ‘Play Favourites” With My Disabilities

Christina Irena

Christina is an author/speaker/comedian with more than one chronic illness and recently realized that she played favorites with which ones she acknowledged and others that she downplayed.

This is a short story but one that many can identify with. She decided to ask herself why she did that and writes about what conclusion she reached.

To read Christina’s story, please go to:
Author/speaker/comedian with osteoarthritis, fibromyalgia, CFS, IBS. I made TalkingSplat.com to help people like me live better lives, and people who aren't like me to understand us.

https://themighty.com/2021/07/chronic-illness-disabilities-playing-favorites/

"Do you identify with just one of your multiple conditions, and what are you ignoring because you do?"

Address

# 512- 33 Banner Road
Ottawa, ON
K2H 8V7

General information

Membership Fee: $30.00 per year and includes quarterly newsletters and internet updates.

Telephone

613-829-6667

Products

Annual Membership fee of $30.00 which includes quarterly newsletter "QUEST" and updates.

'QUEST' - a quarterly newsletter for members included with membership fee.

The Goose Story on which the Network's Logo is based

ME and FM pamphlets in English & French.

TEACH-ME a Sourcebook for teachers & Parents of children and youth with ME/CFS and/or FM

Canada Pension Plan Disability Guide

Overviews of the Canadian Consensus Documents for ME/CFS and FM

ME/CFS Primer for Clinical Practitioners

Canadian Consensus Definitions. See http://www.mefmaction.com/index.php?option=com_content&view=article&id=215&Itemid=262

Numerous other resource items.

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Send a message to National ME/FM Action Network:

Become a Member & Subscribe to our Quarterly Newsletter ‘QUEST’

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.

IN FINANCIAL DIFFICULTY? Complete the membership application requesting free membership.

FOR MEMBERSHIP APPLICATION, please go to:

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