Tag Archives: FM

Ontario’s Task Force Releases its Phase 1 Recommendations to help people suffering from chemical sensitivity but health ministry abdicates again. Here’s a new take on that report.

An important update on the situation in Ontario, from Varda Burstyn, one of the original members of the Task Force on Environmental Health.

Please read and share, and find a way to put pressure on the elected reps, and if possible, get much needed media attention on this travesty of justice!

Note too that it’s not just for us, it’s a public health issue when over 50% of children have chronic health problems (including preschool kids with disabling anxiety), and something like 2/3 of the population on at least one pharmaceutical drug. We know that removing the cause of the problem results in better health than ineffectively trying to manage some symptoms!

When the canaries are ignored, public health suffers!

Dispatches from The Chemical Edge

Hundreds of thousands are sick – and after 33 years, Ontario government again declines to implement basic measures of care

 Extracted pages from task_force_on_environmental_health_report

“These three environmental health conditions typically have a devastating impact on the individuals affected. Unfortunately, our health care system too often has not helped them to the extent they need. The report of the Task Force sets out a course that will begin to remedy this. I look forward to seeing the Minister’s response to our report, and urge him to respond quickly and decisively. There is a need for strong leadership.“ Neil Stuart, Vice-Chair of the Task Force.

Few people have any idea of the number of people in Ontario afflicted with the debilitating, painful, often co-occurring and even life-threatening conditions of Environmental Sensitivity/Multiple Chemical Sensitivities (about 310,000), Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (about 215,000) and Fibromyalgia (about 196,800). But it turns out that, in total, there are a…

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Statement From ARCH and CELA re MCS, ES, and the Ontario Task Force on Environmental Health

The ARCH Disability Law Centre and the Canadian Environmental Law Association (CELA) announced in September of 2016 that they were working on a report about the challenges faced by people with multiple chemical and/or environmental sensitivities.

ARCH Alert September 2016

“ARCH, in collaboration with the Canadian Environmental Law Association (CELA), has been working on a report about the challenges faced by people with multiple chemical and/or environmental sensitivities.  Our report was informed by consultations with persons who experience these disabilities. 

One of our major findings is the significant extent of attitudinal barriers faced by this group of people.  Often, they find that they are not believed when they ask that scents, fragrances or other products not be worn in the workplace, educational settings, health care settings or places where services are received.  We believe that a large awareness campaign is needed to educate the public about the impact of these disabilities on all aspects of a person’s life.”

 

The release of their report has been delayed because they want to respond to the Ontario Task Force on Environmental Health’s Interim Report, which came out just when their own report was intended for release.

In the November 2017 issue of Arch Alert, both ARCH and CELA  urge the Task Force to do more consultations with those of us who are living the experience:

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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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First Municipal Government Adopts Life Saving Plan for People With MCS/ES, CFS/ME, and FM

Good news for some people who have MCS/ES, CFS/ME, and FM

Tarragona SPAIN

RESCUE PLAN FOR PEOPLE WITH CENTRAL SENSITIVITY SYNDROMES:

THE CITY OF TARRAGONA (CATALONIA, SPAIN) IS THE FIRST MUNICIPAL GOVERNMENT THAT IMPLEMENTS IT!

The first municipal government that has stepped forward to implement this plan, is the City of Tarragona Municipal Government (Tarragona is a major city 100 kilometres south of Barcelona). In the plenary session held last November 30th, the “Institutional Declaration of support for people with Central Sensitivity Syndromes” was approved, which consists of a concrete programme of measures. This is a historical step.

In part, the agreement includes:

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2015 – A Retrospective

I was hoping to be able to share some good news with you all, and here it is. We ARE making progress! It is unfortunate that it has taken this long, but I believe we are almost at the point where we will see an “overnight” shift happen.
Here’s what Dr John Molot (the author of “12,000 Canaries Can’t Be Wrong”) has to say:

John Molot

2015-summaryIt’s the end of 2015, a time to celebrate the promise of the coming year but also a time to reflect on the 12 months that have just passed. It was an incredibly exciting year for me professionally. As a physician who advocated for my patients for so many years, I no longer feel that I am paddling upstream against the hardline, medically conservative current that has discredited environmental medicine for decades. The patient groups that I work with have realistic hope for improved care in the near future.

My 2015 :: Science :: Media
Medical Profession :: Insurance Companies :: The Canaries
What’s to come?

My 2015

This year, I have had several opportunities to effectively represent the people with environmentally linked conditions. I have been actively involved with the Ontario Ministry of Health and Long Term Care in the development of the promised (2014) Task Force on Environmental…

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2014 Statistics for MCS, FM, and CFS in Canada

The 2014 statistics for Canadians reporting a diagnosis of fibromyalgia, chronic fatigue syndrome, or multiple chemical sensitivities, (by sex, household population aged 12 and older) are here:

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Report: RECOGNITION, INCLUSION AND EQUITY – THE TIME IS NOW

Many of us have been waiting for action for decades, let’s hope that this is the project that finally makes it happen. It has been a long time coming…

‘RECOGNITION, INCLUSION AND EQUITY – THE TIME IS NOW: PERSPECTIVES OF ONTARIANS LIVING WITH ES/MCS, ME/CFS AND FM’

Recognition Inclusion and Equity the Time is Now

From Varda Burstyn:

At long last, I am writing to let you know about four new groundbreaking reports – products of a 5-year initiative that I and colleagues began in 2008 – that present exciting new research on the three environmentally linked conditions of ES/MCS, ME/CFS and FM, and that develop a wonderful new model of care and support for those living with the conditions in Ontario.

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New PAGE on Statistics for MCS/ES, FM and ME/CFS

I’ve assembled prevalence statistics from Canada and the US into one place, including images and links to documents with more information.

Included are links and images with Canadian stats for MCS/ES, FM, and ME/CFS, and US stats for MCS. I will update to include more stats from more countries when I have reliable sources for them. Please share any that you are aware of.

The new page is located at the top of this site under the MCS/ES page, or via this link:

Statistics for MCS/ES, FM and ME/CFS

Here is a sample of what you will find there:

According to The Canadian Community Health Survey (CCHS) and Statistics Canada, between 2005 and 2010 the rates of people diagnosed with Multiple Chemical Sensitivities (MCS), Fibromyalgia (FM) and Chronic Fatigue Syndrome (CFS) in Canada increased significantly.

The number of people diagnosed with MCS increased by 31%
The number of people diagnosed with FM increased by 15%
The number of people diagnosed with CFS increased by 24%

Chronic Conditions Prevalence Comparisons
(for perspective)

You can find all the statistics, links and images in the ‘Statistics for MCS/ES, FM and ME/CFS’ page at the top of this site under the MCS/ES page, or click on this link:

https://seriouslysensitivetopollution.wordpress.com/mcses/statistics-for-mcses-fm-and-mecfs/

With gratitude to the National ME/FM Action Network for much of the material.

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