Category Archives: ME/CFS

Blog-Share: Brain-Fog Part One

I found a blog post with some great descriptions of brain fog and how it can affect those of us who have it. Click on the link title to read Sarah’s stories:

Brain-Fog_Part One.

too foggy

I can relate to so many of the descriptions, having had very similar experiences for  years…

And I am so very glad that I can now make my daily (fair trade, organic) coffee and do other slightly more complex things without needing to exhaust myself using all my (still limited) energy and effort to remain mindful focusing on whatever task is on hand. (The ability to hold more than one thought in my mind and do two things at once again has created new challenges, but that’s another story)

Fun times, not… even though they can make some funny stories when we feel better!

Ontario Centre of Excellence in Environmental Health Project

Ontario Centre of Excellence in Environmental Health

Business Case Proposal Project

I’ve received the following email and attachments (copied below) which we are being asked to share:

Dear Friends of the ES/MCS Community:

 We have some very important and exciting news to share with you regarding the creation of a number of key health and social supports within the health care system for people who suffer from environmental sensitivities and multiple chemical sensitivities (ES/MCS).

 We are attaching the following:

1.     Letter which is self-explanatory with the latest news

2.     Questions and Answers Background Briefing document which describes Steering Committee of the Ontario Centre of Excellence in Environmental Health Business Case Proposal project.

Please read this very important information.

Best wishes,

Denise Magi, V-P MEAO
http://www.meao.ca

AU 2011

What follows is copied from the PDFs for those who do not have easy access to downloading
(The PDF is also available for those who prefer to download files)

Continue reading

2013 Proclamation From Toronto

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivities Awareness Day

May 12, 2013

WHEREAS over 568,000 men, women and children in Ontario live with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Fibromyalgia or Multiple Chemical Sensitivities.

Myalgic Encephalomyelitis, commonly known as Chronic Fatigue Syndrome, is a neurological and autoimmune disease with no known cure. It is characterized by overwhelming fatigue and chronic symptoms that inhibit a person’s ability to work and perform routine everyday tasks.

For those living with Fibromyalgia, a disease characterized by severe pain in muscles, ligaments and tendons, the pain can become so severe that it prevents the individual from working or engaging in any physical activity.

Multiple Chemical Sensitivities, also referred to as Environmental Sensitivities or Intolerance, are initiated by an unusually severe sensitivity or allergy-like reaction in individuals when exposed to a number of different pollutants such as chemicals, perfumes and other environmental triggers.

On May 12, communities across Ontario will join the Myalgic Encephalomyelitis Association of Ontario to raise public awareness, educate the medical profession, raise funds for necessary services and end the stigma and discrimination that accompanies these diseases.

NOW THEREFORE, I, Mayor Rob Ford, on behalf of Toronto City Council, do hereby proclaim May 12, 2013 as “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivities Awareness Day“in the City of Toronto.

Mayor Rob Ford

Voices from the Shadows, a Film About ME/CFS From the UK

People with visible and invisible disabilities are often not only discriminated against, but far too often abused. Some of the abuse is from ignorance. Other times it is systemic and sometimes it is political.

ME/CFS, FM, and MCS/ES are often overlapping conditions. Canadian diagnosis stats with more details are here or a simple chart is at the bottom of the page here.

There are 3 dedicated clinics in Canada for diagnosing these conditions (and more, such as EHS). One is in Toronto (with a perpetual long wait list) and a new one just opened in BC with Dr Bested as the clinic director and was immediately overwhelmed with people seeking appointments. There is also one in  N.S.

Some provinces have a diagnostic code for ME/CFS now, and for FM, but not for MCS/ES. The CDC has also recognized it. In the US, people can look for doctors on the AAEM website. (there may be others, I am not as familiar with the US resources).

People in the UK and elsewhere are still trying to get proper recognition and protocols in place so that patients there are also not subjected to more abuse on top of these already devastating conditions.

Watch the trailer of the film here, then  you can link to the full length film from the Voices from the Shadows website. Continue reading