Tag Archives: ME/CFS

Open Letter to the Ontario Minister of Health and the MOHLTC

Dear Minister of Health, we’re ready for action!

According to official statistics:

250,000 Ontarians had been diagnosed with MCS in 2014
and the discrimination is still systemic in 2018

SUBJECT: Accommodation for People with Disabilities

Honourable Helena Jaczek, Minister of Health (at hjaczek.mpp@liberal.ola.org )


On September 29, 2017,
Ontario  quietly released the report “Time for Leadership: Recognizing and Improving Care”  for those with myalgic encephalomyelitis /chronic fatigue syndrome, fibromyalgia, and environmental sensitivities /multiple chemical sensitivity  (ME/CFS, FM and ES/MCS). This report  was produced by the Task Force on Environmental Health for the Ministry of Health and Long Term Care.

The report found that throughout the Ontario health care system and in society at large, there is:

• a lack of recognition of the seriousness and severity of these conditions
• a profound shortage of knowledgeable care providers
• a dearth of clinical tools to support and guide care
• a discouraging shortage of services and supports for people living with these conditions
• an absence of support for family caregivers

The lack of knowledge and appropriate accessible care has devastating effects on Ontarians struggling with ME/CFS, FM and ES/MCS.

Continue reading

Province of Ontario Interim Report on ME/CFS, FM, and MCS/ES

The Province of Ontario’s Ministry of Health and Long Term Care’s long awaited Environmental Health Task Force Interim Report has finally been released!

“We found that, throughout the health care system and in society at large, there is:

•a lack of recognition of the seriousness and severity of these conditions
•a profound shortage of knowledgeable care providers
•a dearth of clinical tools to support and guide care
•a discouraging shortage of services and supports for people living with these conditions
•an absence of support for family caregivers.

The lack of knowledge and appropriate accessible care has devastating effects on Ontarians struggling with ME/CFS, FM and ES/MCS.

For those living with ME/CFS, FM and ES/MCS, the lack of recognition of these serious and debilitating conditions is as harmful as the lack of treatments. …

We urge the Minister to act now to raise awareness of these conditions and address the barriers that keep people with ME/CFS, FM and ES/MCS from getting the care and services they need.”

From the press release:

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For Me, MCS Means …

mcs es invisible disability framed“For me, MCS means having to wear a mask when I go out”

MCS Awareness Month Guest Post from Laura J Mac

Multiple Chemical Sensitivity or MCS (also known as Environmental Sensitivities) is a chronic and disabling condition characterized by symptoms from low-level exposures to common chemicals. To put it simply, really common chemical exposures are disabling to some people, even in very small amounts.

ES has been recognized as a disability in Ontario since 2000, and federally (in Canada) since 2007, yet most people, and in fact many medical professionals, have never heard of it.

May is MCS Awareness Month, though I promise you, we are aware of it all year!

Instead of asking others to imagine something so unimaginable, we asked 1500 people with MCS to share what life is like with MCS. These memes are some of the responses.*

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Can’t You Hear Me? Why Can’t You See I Need Your Help?

Guest post by Kelly N.

The Scream by Edvard Munch

The Scream by Edvard Munch

It’s the most heartbreaking thing when you realize that you have no one…. zilch zero that will help you!  All you are is a stranger in a strange land with no one hearing your plea.  All the faces look around and stare at you like you have no face, no meaning.

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Have Your Say For May

What if you had the chance to say one thing about your life with MCS/ES, and how it would change your life if it was understood?

May is MCS/ES Awareness Month (yet again… maybe some year we won’t need it to be, but this year, we still do), and this year, I would like to share some of your stories and insights.

this one thing

If you could tell the world ONE thing about your life with MCS/ES (or any other invisible disability that has MCS/ES as a symptom), what would it be?

How has this one thing affected your life?

If this one thing were changed, how would your life be different?

You could think of it as a conversation with someone you love, someone who loves you (or even a kind stranger), someone who wants to understand, and who is willing to do something for you, and/or to change the way they do things, in order to include you in life, and to help you with what you need or want to accomplish in life (for example).

This is your time to tell them this one thing, and how this change will impact your life for the better.

Here’s what I am asking for with your submissions: Continue reading

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

Worth Reading: Other Bloggers Write About MCS/ES and ME/CFS

Worth Reading

Fergiemoto wrote about the challenges she faces due to having MCS and fragrance chemical proliferation. I love her illustrations!  See Human Canaries and Friendship.

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Sharon, a writer and service dog partner who also has Lyme Disease and other disabilities, wrote about how MCS affects her life here: How MCS Affects Sharon

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Phoenix Rising posted this great piece by Carol Schmid who examines what it is about the nature of ME/CFS that makes it likely to generate skepticism. There are many similarities with MCS/ES. See:  The ME/CFS Stigma

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