Category Archives: ME/CFS

Amelia Needs Us

 

Many of you are familiar with Amelia Hill, either via  my blog,  her blog, from her facebook group,  or from the several articles she has written or appeared in, where you can read about her most challenging circumstances and how she has worked so hard to not only survive them, but to overcome them and to help others who are hidden away going through similar challenges.

Amelia Hill

Amelia’s awesome mom Danija has contacted me to say that Amelia’s health has taken a real turn for the worse, and that she and her family have run out of funds to get her the very limited, specific foods and medical care Amelia urgently needs now.

A friend has started up a fundraiser where there are more details about what has happened and what is needed.

Please contribute if you can. Every little bit will help.

Amelia Hill’s Medical Fund

https://www.gofundme.com/amazingameliahill

If you can’t donate, then please keep Amelia in your hearts and prayers.

We LOVE you Amelia!
♥ ♥ ♥

P.S. I will keep you updated in the comments when I have more news to share.

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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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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The Ontario Centre of Excellence in Environmental Health Has a Website

Recognition Inclusion and Equity  is the name of the new website for the OCEEH. Their comprehensive reports and other information about this much needed project can all be found there now. Please check it out and also “like” their facebook page if you are on facebook.

Why? From their website:

MISSION

Our overarching goal is to achieve ‘recognition, inclusion and equity’ for people living with the often painful and disabling conditions of ES/MCS (environmental sensitivities/multiple chemical sensitivity), ME/CFS (myalgic encephalomyelitis/ chronic fatigue syndrome) and FM (fibromyalgia).

At present, more than 568,000 patients with these conditions lack the normal rights, benefits, policies, programs and facilities that Ontario makes available to those with conditions of comparable severity and prevalence.  …

CONDITIONS OF COMPARABLE SEVERITY AND PREVALENCE

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Support the Ontario Centre of Excellence in Environmental Health (OCEEH)

The Myalgic Encephalomyelitis Association of Ontario (MEAO), along with others, has been working on a plan to get proper health care and supports established for the hundreds of thousands of people in Ontario who are affected by the “often overlapping, commonly disabling and sometimes life-threatening conditions of ES/MCS (Environmental Sensitivities/Multiple Chemical Sensitivity), ME/CFS (Myalgic Encepahlomyelitis/ Chronic Fatigue Syndrome) and FM (Fibromyalgia).”

A quick, easy summary document of the features and benefits of the OCEEH  business case proposal for a comprehensive network of care and support has been sent to every MPP in Ontario. Here it is for you too (copied from the PDF 2014 OCEEH IN A NUTSHELL), so you can encourage your local elected representatives to support it in Ontario, and to support similar plans everywhere else in the world:

ONTARIO CENTRE OF EXCELLENCE IN ENVIRONMENTAL HEALTH (OCEEH)
‘IN A NUTSHELL’

“Five percent of Ontario’s population is affected by the often overlapping, commonly disabling and sometimes life-threatening conditions of ES/MCS (Environmental Sensitivities/Multiple Chemical Sensitivity), ME/CFS (Myalgic Encepahlomyelitis/ Chronic Fatigue Syndrome) and FM (Fibromyalgia).

As of 2010, over 568,000 Ontarians had been diagnosed with one or more of these conditions. This number grew from 439,000 in 2005, as reported in Statistics Canada’s Canadian Community Health Survey. It demonstrates prevalence comparable to diabetes, heart disease, cancer and effects of a stroke. These are very widespread conditions, and the 2010 figures are likely underestimates.

Recognition, diagnosis and treatment of these serious conditions are absent from Ontario’s health care system at present. Even though a commission of enquiry recommended services be put into place for ES/MCS as long ago as 1985, exclusion, discrimination and stigmatization of those living with these conditions have been the rule; and Ontario has lost physicians seeking to help these groups.

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Proclamations – City of Toronto – May 12th, 2014

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

proclamation-header-ford

 

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

May 12, 2014

WHEREAS Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivities Awareness Day aims to raise awareness and end the stigma and discrimination that accompanies these chronic illnesses.

Over 568,000 individuals living in Ontario are afflicted with one of the three following chronic illnesses: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Fibromyalgia or Multiple Chemical Sensitivities. Once diagnosed, an individual is often ill for years with as many as 70 per cent of sufferers becoming disabled for life.

Myalgic Encephalomyelitis, commonly known as Chronic Fatigue Syndrome, is a neurological and autoimmune disease characterized by overwhelming fatigue, pain, headaches, cardiac symptoms, immune disorders, dizziness and balance problems.

Fibromyalgia is characterized by severe musculoskeletal pain and tenderness in many areas of the body along with fatigue and sleep dysfunction, generalized or regional stiffness and in some cases neurological and cognitive symptoms. This pain can become strong enough to prevent people from working or engaging in physical activities for months and even years.

Multiple Chemical Sensitivities, also called Environmental Sensitivities or Intolerance, are initiated by an unusually severe sensitivity or allergy-like reaction to many different kinds of pollutants such as chemicals, perfumes and other environmental triggers.

Each year on May 12, communities across Ontario will join the Myalgic Encephalomyelitis Association of Ontario to increase awareness and educate the medical profession about these chronic conditions. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivities Awareness Day will raise funds to support the crucial services provided by the Myalgic Encephalomyelitis Association of Ontario and other organizations.

NOW THEREFORE, I, Mayor Rob Ford, on behalf of Toronto City Council, do hereby proclaim May 12, 2014 as “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivities Awareness Day” in the City of Toronto.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Fibromyalgia Day – Proclamations – City Clerk’s Office | City of Toronto.

 With thanks to MEAO (Myalgic Encephalomyelitis Association of Ontario)

Big News for Ontario

From the News Release:

“The province is providing nearly $560,000 to support two new annual fellowships over three years for a total of six new fellowships. They will allow family medicine graduates to complete an extra year of focused training in environmental health, and will help primary care providers like family doctors offer the right care to assess, diagnose and treat environmentally-linked health issues.”

 

“Environmental health is an emerging public health field that examines the relationship between the environment and human health. This includes the role of the environment in contributing to serious health conditions that can be disabling and even life threatening, such as environmental sensitivities, myalgic encephalomyelitis/chronic fatigue syndrome, fibromyalgia and other chronic, complex disorders. ”

 

“There is a growing recognition that our environment and our health are connected. Through these new fellowships, we can develop greater understanding of the links between health and the environment in order to provide better care to those suffering from complex chronic illnesses.”

~
~ Deb Matthews
Minister of Health and Long-Term Care

 

“The study of the environment’s effects on human health is an important emerging field of research. Support for investigating environmental impacts on health is emblematic of our government’s commitment to strengthen healthy communities.”

~
~ Jim Bradley
Minister of Environment

Full News Release:

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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)

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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