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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Accessible Meetings Guide Addresses Chemical and Electrical Sensitivities

Another great resource shared by Mary Lamielle, this time on how to make events accessible for people with MCS/ES.

Accessible Meetings Guide Addresses Chemical and Electrical Sensitivities

The new online resource from ADA Hospitality, Accessible Meetings, Events & Conferences addresses chemical and electrical sensitivities in their planning process.

“The guide is an updated version of a 1993 work authored by June Isaacson Kailes and Darrell Jones. The Mid-Atlantic ADA Center and TransCen Inc. sponsored the update and publication in recognition of the 25th anniversary of the ADA. The updated version includes both regulatory updates along with practical guidance from meeting planning professionals and subject matter experts.

Mary Lamielle, Executive Director of the National Center for Environmental Health Strategies (NCEHS), was invited to comment on the 1993 Guide for the update. She made extensive recommendations addressing the access needs of people with chemical and electrical sensitivities.

The following pages include the NCEHS fact sheet Planning an Accessible Meeting or Event for People with Environmental Sensitivities or Intolerances and recommendations that were incorporated into the just-issued guide. Those with environmental sensitivities are urged to use the fact sheet and the guide to substantiate individual disability accommodation needs and to ensure all meetings are healthier for everyone.”

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In a Doctor’s Own Words: A Toxic Legacy and 12,000 (+) Canaries Later

 

Dr. John Molot is a doctor who sees patients with complex, chronic, environmentally linked, and often disabling, health conditions. Although he is retiring from private practice, he is still a staff physician in the Environmental Health Clinic at Women’s College Hospital in Toronto.

He recently released a book, “12,000 Canaries Can’t Be Wrong“,  wrote a report in support of the Ontario Centre of Excellence in Environmental Health (OCEEH), and appears in a video presentation about the health effects of common  chemical exposures (see below).

Check these out:

12,000 Canaries Can’t be Wrong
What’s making you sick & what can you do about it

http://johnmolot.com/books/

12000Canaries_hiRessm

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Harvard Medical School Associate Professor Speaks about MCS: Video

Dr. L. Christine Oliver is an Associate Professor of Clinical Medicine at Harvard Medical School and Co-Director of Occupational and Environmental Medicine at Massachusetts General Hospital.

This is an excellent half hour presentation.

Dr Oliver packs so much about the issues faced by people with MCS into the first 16 minutes of this video. If you can’t watch the whole video, at least watch this much.  Alison Johnson finishes off by reading from her important book Amputated Lives.

Alison Johnson is the author/producer/director of books and documentaries on Multiple Chemical Sensitivity. Visit http://www.alisonjohnsonmcs.com to download a transcript or to purchase her books or DVDs.

amputated-lives-chemical-sensitivity

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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How to Survive the Holidays with EI and (Possibly) Not End Up Alone or Wanting to Give Your Family the Boot (Part Four)

Part Four of Four

(Part One, Part Two, Part Three)

Guest post by Che Ray

 

If you are hosting the family in your own home, it is true, you must take every precaution.  Otherwise their stink will be there long after they leave.  If they come in with stuff and it gets on your furniture, it will be bad.

Here is a suggestion: let them know in advance that before they enter the house they will have to be willing to have you test whether they are wearing anything that is triggering for you. Then when they arrive, if you have a good friend who gets what you are dealing with, have them first go to the cars of the people who are coming. He or she can do a preliminary test. If she senses something she can be the one to tell them what the problem is.

If you have sent them detailed emails in advance of everything they need to eliminate (she can even bring the check list to the car) then this will come as no surprise. They won’t be mad at you, they will feel bad. And that’s OK. That is the part of the learning process on their end.

If they make it to the front porch, you go outside and test again.  When you first greet them, I suggest having your mask on.  It will let them know right away what the situation is.  Take it off briefly to assess the situation.  If you feel comfortable taking it off at some point later in the evening, you can simply say, I am going to do a test to see how I do.

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How to Survive the Holidays with EI and (Possibly) Not End Up Alone or Wanting to Give Your Family the Boot (Part Three)

Part Three of Four

(Part One and Part Two)

Guest post by Che Ray

 

Here are some things I would recommend: even when it’s a stuck in bed day…

I: Don’t try to do too much physically. Definitely let your body rest, but also do something active to restore your mind like listen to a meditation talk or guided meditation. Tarabrach.com or jonathanfoust.com are great!  I recommend them highly.  This will help you get restorative rest, which is a much deeper, more relaxing experience.

II: I only recently discovered an online language tutorial called Mango. It’s free if you have a public library card. It is an awesome interactive language learning app. It has everything from Spanish to Swahili, to Pirate (really, it’s super fun and funny!) to Yiddish; dozens of languages.

I have a brain injury from the toxic exposures but have not been able to get the kind of occupational therapy I need which has been depressing. One day I thought, what can I do to keep my mind stimulated?  And I came across this. Even if you don’t want to dedicate yourself to learning a new language, 10 minutes of mimicking Pirate language is going to make you laugh and feel better. And it’s good for your brain.

 

III.  You are a superhero.

Recruit other people in your life to join your fight.

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How to Survive the Holidays with EI and (Possibly) Not End Up Alone or Wanting to Give Your Family the Boot (Part Two)

Part Two of Four

(link to Part One)

Guest post by Che Ray

 

Overarching rule of thumb:

Talk about MCS/EI/TE/TILT like you are talking about cigarette smoking or HIV exposure.  What I mean by this is:

A: It is a given fact that second hand cigarette smoking causes disease.

We didn’t know this for a long time because the tobacco industry didn’t want us to know. So people had to put up with cigarette smoke in their face. Now it is not only not tolerated, it’s illegal to smoke in many places.

Explain to people that the elements in cigarettes that really kill people are often the exact same chemicals used in fragranced products.

I also say this condition is like smoking and HIV in that these diseases, more than others, DEPEND on other people caring about the health of people (like us) as much as they care about themselves.

 

B:  We have NOTHING to apologize for, so DON’T DO IT.

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How to Survive the Holidays with EI and (Possibly) Not End Up Alone or Wanting to Give Your Family the Boot

Part One of Four

Guest post by Che Ray


For those of us with EI (environmental illnesses), the holidays are especially brutal.  What were once happy times surrounded by family and friends become increasingly isolating experiences.  Depending on how bad off we are with things like fragrance sensitivity (which, next to fruit cake is the worst part about inviting Aunt Betty) or severe fatigue (where you just want to curl up into a ball under the dinner table), more and more we are faced with having to choose between trying to brave a family gathering only to end up sick in bed for weeks or convincing ourselves we will just stay home and write that novel.

In response to a heart-felt plea for help from one newly aware Canary who was torn between wanting to accommodate her family and fear of going overboard and getting sick, I wanted to reach out to her and give her some advice I wish someone had told me.  This is more or less what I said:

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If Only You Could See

Guest post and art from Gloris Smith Young 

You look at me
You look away

I see it every day
If only you could see

This could be you
Instead of me

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Help for How to Be Fragrance-Free

All it takes is a decision to go fragrance-free!

It should be easier than quitting smoking since there aren’t supposed to be addictive chemicals in fragrances, right?

Due to the fact that so many people are now experiencing adverse effects from fragranced products (34.7% in 2016), we are well on the way to having fragrance-free policies everywhere for the sake of protecting public health just as was done with smoking bans. It’s not just those of us who suffer immediate and disabling adverse effects from the products (1st, 2nd, and 3rd hand), but for everyone.

Here are some great resources (in no particular order) to help you go fragrance-free:

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