Our Goals, Vision & Mission

The Manitoba ME/CFS Support Group Inc.
is a non-profit organization with the goal of providing peer support
and information to those Manitobans suffering from ME/CFS, as well as improving their quality of life and reducing their isolation.
We also seek to increase public awareness in all sectors of society
about the many issues associated with this debilitating illness
through education and advocacy.

OUR MISSION

Our Objectives & Goals:

  • Provides support, you are not alone.

  • Safe place for sharing, confidentiality & privacy assured.

  • Health self-management education, it's all we have, take care of yourself first.

  • Learn from others, everyone is equal, our group is respect and non-judgemental.

Our Vision:

  • To have a voice, to feel included, welcome and validated in their community.

  • To have timely access to compassionate and equitable medical care, with flexibility for individual testing and treatment.

  • To have timely access to compassionate supportive rehabilitative programs, mental health services, food and housing security.

Our values, which guide our work, are compassion, credibility, understanding, community inclusion and connectedness.

Incorporated in 2017, the current Manitoba ME/CFS Support Group was founded 12 years ago in collaboration with the National ME/FM Action Network.

The number one priority of the MB ME/CFS Support Group is to support, advocate and educate our members on ME/CFS issues through monthly support groups. Previous to the pandemic, we met in members’ homes and various restaurants throughout the city. At present we meet online.

We are run entirely by volunteer patients who freely commit their precious energy, strength, time, and skills. Those, who have the ability, pitch in to complete the necessary organizational tasks. As we rely solely on private donations, our operating budget is minimal. With energy at a premium, our progress has been slow but steady.

The membership list continues to grow. Like many other peer-led, drop-in organizations, people move in and out of the group finding the support and validation they need. We appreciate all those who have chosen to remain on the confidential email list. We need to find strength in numbers; Manitoba voices need to heard.

Many of our inter-provincial counterparts were formed in the 1990s and have obtained charity status. This leaves Manitoba long overdue for the establishment of an organization large enough to meet the needs of this ever-growing population. Awareness and community support are desperately needed. The stigma that patients experience leads many to hide their illness and live in the shadows. As the illness takes its toll, many patients become housebound or bedridden, and some lose their ability to communicate. In the process they lose much more; jobs, income, social connections, and access to health and home care. Left with little support, and less understanding, they risk falling prey to the consequences of isolation and depression.

The lack of support from media and the many Manitoba organizations that we have reached out to for assistance has been very frustrating and disheartening. With the benefit of hindsight, perhaps we could speculate where best to have placed our limited energies. We must stay positive at this time of change. It is our hope we will finally achieve some recognition and validation for our ignored population.

PROVINCIAL LIAISONS

The Fibromyalgia Support Group of Winnipeg Inc. has provided excellent emotional support and education to all Manitobans with fibromyalgia (and ME/CFS) for over 30 years. There is a 40% overlap in conditions but it is a separate pathology. They refer individuals to us who want more information on ME/CFS and we promote and support all their programs and services.

In 2017, Manitoba Possible (formerly Society for Manitobans with Disabilities) graciously invited us to become part of them either by providing on-site office space or online affiliation. Both required low annual fees; however, we have not been able to secure any revenue thus far allowing us to join.

NATIONAL AFFILIATIONS

Since 1993, National ME/FM Action Network has dedicated its mission to the advancement and understanding of ME/CFS and FM through education, advocacy, support, and research. We joined them in 2010 and continue to appreciate their ongoing administrative and continued personal support.

  • Millions Missing Canada (Advocating for ME research funding and treatment access in Canada)

  • Action CIND (Chronic Immunological and Neurological Diseases) 

  • Participated in May 12, 2019 International ME/CFS Awareness Day with public event at Assiniboine Park.

  • Participated in Canada’s First Collaborative Conference May 2018

  • Members contributed via survey for our presentation. Conference impetus for ICanCMe.