Happy Birthday, Ruth!

Get out your birthday hats and get ready to boogie– we have another Canary Birthday today!!

Today is Ruth’s Birthday! For those of you new to The Canary Report today: Ruth is one of our regular comment contributors. Thanks, Ruth, for all you bring to our discussions!

Okay Ruth, here we go, all for you: *Puts on party hat* and then *Dance, dance, dance, twirl around, skip, jump, throw hat in air, catch, do another twirl, side step, sashay, scoot and dance, dance dance!!*

HAPPY BIRTHDAY, RUTH! All the best in the world to you!! *Cuts cake, pours hot chocolate, and passes around to everybody!!*

xoxoxoxo

Germany strikes psychosomatic cause from Multiple Chemical Sensitivity guidelines

Germany’s Ministerium für Arbeit und Soziales removes the statement from the government’s disability guidelines that said Multiple Chemical Sensitivity is a somatoform (psychological) disorder.

This is great news for people with MCS throughout the world! The German government has struck out the statement from its MCS guidelines stating the illness is psychosomatic. This is inspiring for everyone throughout the world with MCS as a very important step toward universal recognition of MCS as a physical illness caused by chemical injury.

Here is a translation of the news received through email via Canada’s branch of the Global Recognition Campaign:

Merry Christmas for MCS patients

Silvia Mueller writes on Christmas Eve:

Here is the best message. The German Government Department for Social is the main department for disability, The Ministerium für Arbeit und Soziales. There are guidelines which are used by doctors, courts, authorities,… when it comes to a disability. In our disability guidelines MCS is a physical disease. It is registered in the part for movement disorders, because we can’t go everywhere, etc. There was one sentence in this guideline which was disturbing and used by opposition to refuse our cases and say we are psychosomatic cases. It said MCS is a somatoform disorder.

One of my people at CSN wrote to the department and asked that this nasty sentence is removed from the guidelines. Now MCS is a physical disease nothing else.  We have also the ICD-10 which says MCS is a physical disease. With these two tools nobody can discriminate us anymore.

It’s a victory - It’s Christmas for chemically sensitive people over here. We gave this information and the government letter as a present to the CS people today. After we started an online party. The motto of the party is that we think also about those who have nobody and we write poems, place links to you tube videos, write fun, greetings,… If you like to send something I can place it in for you, the people will love it.

Link to CSN Blog.

Dr. Rea and nobody else should worry. They can’t stop chemical sensitivity or declare us nuts anymore. We call it “the train is gone”.

It happened too much, and the bonds between people all over the world are too strong. Doctors find out more and more. And we all will not stop talking about it.  They can’t quiet us anymore.

Bonita Poulin

Canadian Coordinator
GLOBAL RECOGNITION CAMPAIGN
Multiple Chemical Sensitivity
and other Chemically Induced Illnesses, Diseases and Injury affecting civilians and military personnel

MCS Global

Feel free to leave some comment love on the CSN Blog based in Germany. What a beautiful and supportive community they have! I feel so very happy for them. Let’s achieve this same good news in America and throughout the world!

Thanks, Linda!

Australia developing policy on Multiple Chemical Sensitivity

Australia’s Office of Health asks for public input on draft report on Multiple Chemical Sensitivity

For all you readers in Oz, and an FYI for everyone else:

The Australian Office of Health and Office of Chemical Safety has released for public comment a working draft of a report entitled,  “A Scientific Review of Multiple Chemical Sensitivity: Identifying Key Research Needs.”

The report’s authors are asking for input to ensure all available scientific literature and technical information is included in the document to better identify the priority areas for research on MCS.

Here’s the Australian MCS Network’s thoughts on the Draft Report:

We feel it is important for the final document to be well informed and reflective of the current state of scientific research and thinking.

We are concerned that, despite current research evidence strongly supporting a physiological basis for MCS, the draft report appears to place emphasis on a psychogenic aetiology.

The final report will have a significant impact on the way Australians with MCS are treated and whether they get adequate access to health care and other services.

The report may be used as a key document by Government, hospitals and non government agencies, within Australia and internationally, to develop policies and services relating to MCS.

We would be grateful if you could find the time to make a submission to NICNAS on this report as it will affect the funding and direction of research into MCS.

Submissions can be emailed to:
MCS[at]nicnas.gov.au

or posted to:
MCS Report
NICNAS
GPO Box 58,
Sydney NSW 2001

The closing date is 30 January 2009.

Thank you.

Yours sincerely,

Members of the Australian MCS Network

ASEHA Qld Inc
PO Box 96
Margate QLD 4019

Dr Geoff Pain
Scientific Advisor
Environmental Chemical Hypersensitivity Organisation
PO Box 529
Harvey WA 6220

Peter Evans, RN (formerly), Grad Dip Health Counseling Convenor
South Australian Task Force on Multiple Chemical Sensitivity
PO Box 3308
Port Adelaide SA 5015

Tanya Lockett
General Manger/Community Leader
PocketWomen
PO Box 26
Rosewater SA 5013

Alexa McLaughlin
President
AIRA Inc (Allergies & Intolerant Reactions Association)
C/- 6A Gymea Street
Narrabundah ACT 2604

Julian Robinson
62/44 Jerrabomberra Ave
Narrabundah ACT 2604

Kerryn Ryan
Fragrance And Chemical Sensitivity Support Group
PO Box 162
Strathdale VIC 3550

Ann Want
Australian Chemical Trauma Alliance
309 East Bonville Road
Bonville NSW 2441

Link to information sheet on the Draft Report process

Link to full Draft Report

Thanks, Linda!

Multiple Chemical Sensitivity in a hospital setting

Photo: Rodger Norris, who has multiple chemical sensitivity lives in a remote home in Timberon, New Mexico. The nearest neighbor lives about a mile away, and the nearest small town (where he lived for seven years until an increase in traffic caused his symptoms to worsen) is 35 miles over winding mountain roads. In the photo, Norris, 56, displays the sign he posts at the doors of his house and his driveway, describing his condition and warning away visitors who are smokers or who are wearing products that contain artificial fragrances. Courtesy of Rodger Norris.

A registered nurse, Carolyn Cooper, MPH, RN, wrote an article in 2007 about how to care for patients in hospital who have Multiple Chemical Sensitivity. (Roger Norris pictured above was a subject of Cooper’s report.)

Given that the article was written two years ago, it gives us some perspective about how far we’ve come with the current literature on toxic chemicals in our environment. You will see better what I mean if you read Cooper’s full article. For example, all the male reproductive studies have come out since this article was published, as have most of the BPA and melamine and FEMA formaldehyde reports - so the public and the medical profession knows a lot more now than it did then.

Here’s an excerpt:

Overview: Multiple chemical sensitivity (MCS) is a condition in which people experience a broad array of symptoms in reaction to exposure to trace amounts of common chemicals. Symptoms are most often triggered by odors, typically affect many systems, and can range from a runny nose to difficulty breathing and heart palpitations. The cause of this condition is unclear and there is no universal consensus on how to diagnose or treat it. MCS afflicts millions of Americans, although its prevalence is difficult to establish reliably. Theories of causation include both the physical and the psychogenic. This article begins with a case study, describes the current research on MCS, and offers recommendations to guide nurses when treating these patients in the hospital.

[...]

The definition of MCS has also changed over time and may continue to evolve. Its essential feature remains, however, the patient’s assertion of a link between a variety of symptoms and low-level chemical exposures that act as triggers.

While the Centers for Disease Control and Prevention doesn’t recognize a diagnosis of MCS, it does acknowledge the existence of “chronic multisystem illnesses,” including chronic fatigue syndrome, the symptoms of which often resemble those of MCS.

A 1999 consensus statement published in the Archives of Environmental Health offered the following six criteria for a diagnosis of MCS:

* Very low levels of exposure to chemicals and other irritants, well below toxicity thresholds, produce symptoms.

* Symptoms are reproducible with repeated exposure to the chemical or irritant.

* The condition is chronic.

* Symptoms lessen or resolve when the chemical triggers are removed.

* Similar symptoms may be caused by several chemically unrelated substances.

* Symptoms occur in multiple organ systems.

But clinicians may find these open-ended criteria difficult to apply, especially without laboratory analysis and other physical findings to link specific exposures to specific symptoms.

There’s also no accepted definition of what constitutes a “mild” or “severe” case of MCS, nor is there a consensus on whether the condition is always caused by a precipitating environmental exposure (as may be the case for certain industrial workers or for those exposed during an accident to a single high dose of a toxic chemical). And while research is ongoing, diagnosis is further complicated by the fact that many of the most common symptoms, such as fatigue, heart palpitations, sweating, and difficulty concentrating, are the same as those necessary for the diagnosis of various psychosomatic and psychiatric disorders, including depression, somatoform disorders, panic disorder, and agoraphobia.

All staff members should at the very least take the following precautions when working with people who have MCS.

* Don’t use perfume, aftershave, or scented lotion.

* Keep free of the odor of cigarette smoke.

* Wear a long-sleeved cotton surgical gown (and cap if necessary) to mask odors if you know you smell of a potential irritant and no other caregiver is available.

* Knock first and wait to be admitted to the patient’s room.

Surgery. When a patient with MCS is scheduled for surgery, notify perioperative areas well in advance. It is particularly important that the anesthesiologist confer with the patient before a surgical procedure so that medication sensitivities can be considered. Perioperative clinicians must be prepared to carefully reassure patients that safety measures will be taken on their behalf. Other recommendations for surgery include the following:

* Schedule the procedure as the first case of the day to minimize exposure to environmental irritants that will be stirred up during the day.

* A ceramic or porcelain oxygen mask may be indicated to deliver anesthesia.

* Povidone iodine is generally a safe antiseptic solution, but isopropyl alcohol should be used sparingly.

* Use paper tape for surgical dressings (or assess the patient’s reactions to other adhesives 24 to 48 hours in advance by using patch tests).

* Use only latex-free gloves.

Link to full article

PDF of full article: mcs-in-a-clinical-setting

Carolyn Cooper’s blog

Thanks, Linda, for link and added insight!

Happy Birthday, Irene!

One of our flock, Irene, is having a birthday! For those of you who may not have followed the comments left by Irene on The Canary Report over the past few weeks, along with her Multiple Chemical Sensitivity, she also is recovering from a stroke and experiencing myriad other health problems. On top of that, she feels alienated by the health care system and isolated in general. These are problems all too familiar to people suffering MCS, and my heart goes out to Irene in her struggles.

To Irene I say:

Happy Birthday, Irene! Hang in there, Canary, you’re a tough old bird.

Happy Birthday and godspeed to you!

Aloha,

Susie

More on Gulf War Illness

Boston.com has a story today on Gulf War Illness.

I think the findings of the study recently released showing exposure to pesticides and other toxic chemicals as the cause of Gulf War Illness are going to help our cause in having Multiple Chemical Sensitivity fully recognized by the government. Note that the Gulf War vet here in the excerpt says that the smell of perfume or a new car causes her serious physical distress. Yes, people with severe chemical injury can then develop adverse health problems from exposure to low level toxic chemicals like fragrance and off-gassing plastics. We know that, and vets with Gulf War Illness know that. The more studies that are done, the closer we are to having MCS fully recognized by government, which will affect policy in health care, housing, employment and other basic rights.

Now if they’d just start to connect the dots between the vets and the rest of us. I wish they’d hurry up for ALL of us. We’ve all waited long enough.

Tara Batista says she cannot ever recall her phone number. But she can remember clearly what she was like before she drove an ambulance through the deserts and combat zones of Saudi Arabia in the winter of 1991.

“I was 19; I was healthy,” she said in a recent phone interview. As a combat medic during the Gulf War, Batista, who now lives in Fitchburg, stood in clouds of pesticides and, under orders, took a little white pill twice a day as a precaution against a chemical attack.

Today, she says, the smell of perfume or a new car makes her lose the ability to speak, and triggers dry heaves, weakness, and pain that rises through her body like a shiver. She has recurring sinus infections and night sweats.

Last year, she contemplated killing herself.

[...]

The drug, pyridostigmine bromide, and certain pesticides used during the war to keep fleas and sand flies at bay affect the central nervous system, the report found, and are associated with memory and focus problems, persistent headaches, respiratory and digestion problems, and “widespread pain.” The report concludes that there are no effective treatments, and that the conditions of afflicted veterans have remained static or worsened in the nearly 18 years since the Gulf War ended.

“The physical symptoms are real and not in people’s heads,” said Roberta White, the scientific director for the committee, which began its evaluation of Gulf War research and programs in 2002.

Read the full story at Boston.com.

Read the full report on Gulf War Illness here.

Dear President-Elect Obama: Health care is a right

Yesterday’s post on President-Elect Obama’s request for input on Health Care inspired many of you to write him about Multiple Chemical Sensitivity. Bravo! Like true canaries, you are out front sending your messages of warning and need.

I’d like to post the letters if you would like to share. If you’ve saved a copy, send to me via email to susie(at)thecanaryreport(dot)org.

Missy Gluckman (at left) wrote me this morning with a copy of her remarks. The Canary Report has been following Missy’s struggle with severe illness and MCS brought on by toxic mold exposure at her place of work. Here are Missy’s remarks to President-Elect Obama:

Dear President Elect Obama,

Thank you for asking for our input!

I would like to see ND (Natural Doctors - licensed by many states) included more regularly in health care plans. In addition, natural supplements that are prescribed by NDs are not covered by health insurance and I would like to see this change.

Why do I care about this? Well, let me clarify: I tried traditional medicine for 39 years of my 40 and switched recently to an ND after 3 years of treatment for a variety of illnesses caused by mold/toxic exposure that nearly killed me at 37.  My ND, thankfully, is covered by my insurance plan (Anthem - state of CT), but this is RARE. The ND has been the only person in 3 years who has given me ANY relief from toxic poisoning and the related illnesses (thyroid, liver and lung damage, multiple chemical sensitivity, etc). Without her unique approach to healing, I would likely be pushing for Full Disability which costs the govt a lot more than me being healthy and working (i’m categorized as Partially disabled by NY State worker’s compensation - but I choose to push through it and work bc I WANT to be productive and could not afford to live on $400 a week as granted by worker’s comp).

The natural approach would potentially improve the health and quality of life for thousands who suffer from toxic exposure, yet 99% of people will not go to this type of Dr bc of lack of insurance. An avg appt is $200 and supplements (which change each time I go  - can be as little as $12 or as much as $800).   The pharma companies are driving policy and are not always the best solution (in my case, the traditional pharma solutions resulted in a 30 pound weight gain which caused a whole new host of issues and simply did not work on any above stated conditions).

So, please help people who are suffering by giving them the option of licensed NDs and not allowing health insurance companies the right to deny a licensed dr into the network if they meet the criteria (i.e. licensed, etc - my ND was denied access into the Aetna network.)  Natural plant supplements have been used for CENTURIES in countries such as India, Brazil, etc with extremely positive effects - please fund the study and use of supplements so that they can be covered under insurance plans.

Secondly, I would like to ask for a law that requires manufacturers to state the contents of “fragrance” in their items sold (such as candles, lotions, Fabreze, etc). As a person who suffers from Multiple Chemical Sensitivity (MCS), fragrances (which are toxic and some are carcinogens) are like kryptonite to me - within minutes I’m forced to go to bed due to the crippling ear pain, respiratory struggles, etc), all so someone can “smell nice”. If people and the govt understood what was actually in “Fragrance” as a category and how it can cause brain fog and behavioral issues in certain children, they would craft some meaningful laws to protect them and people like me who suffer MCS.

PREVENTION of illness is a big part of the need to restructure our health system. If daily toxins weren’t permitted - and certainly not encouraged - less people would suffer from illness and less children from asthma.

I got ill working at SUNY Rockland Cmty College - at a desk (I was a college administrator.) I was exposed to mold mycotoxins such as stachybotris and penicillium. These cause short term memory loss (brain damage) and hemorrhaging in babies. The school knew about the mold for at least a decade and did nothing to rectify it …WHY? Because our govt (unlike most industrialized countries in the world) has ZERO laws about mold.

Did you know that African American children in urban areas suffer from the HIGHEST rate of asthma in the country - why? Reports indicate that mold in public housing is one major factor - again, no one dictates that you must be permitted to live in a place that is safe from health issues.  Mold is a major cause of permanent illness which drains the economy and feed the pharma system.  This needs to change.

THANK YOU President Elect Obama for asking and for giving us a voice in our lives.  Without my health, I am nothing. Simple as that. Thankfully I am employed by the State of CT and have options - MOST DO NOT and as you said, health care is a RIGHT, not a luxury.

Good health to you all.

Tell Obama about your health care needs

President-Elect Obama is asking for the public’s input on Health Care reform.

This is a great opportunity for those of us in America with Multiple Chemical Sensitivity to inform the incoming administration about our marginalization in the health care system. It’s an opportunity to tell Obama that MCS is a real disability, deeply affecting our health and well being, and that we need physicians and the health insurance industry to recognize and help us with our MCS-related ailments.

What else is on your mind about MCS and health care? What do you think the new administration should do to ensure that people with MCS receive proper health care?

Go here to read the full request for input, or go directly here to the page where you can write your comments.

Here’s the beginning of the intro to Obama’s request for input:

On health care reform, the American people are too often offered two extremes — government-run health care with higher taxes or letting the insurance companies operate without rules. Barack Obama and Joe Biden believe both of these extremes are wrong, and that’s why they’ve proposed a plan that strengthens employer coverage, makes insurance companies accountable and ensures patient choice of doctor and care without government interference.

The Obama-Biden plan provides affordable, accessible health care for all Americans, builds on the existing health care system, and uses existing providers, doctors, and plans. Under the Obama-Biden plan, patients will be able to make health care decisions with their doctors, instead of being blocked by insurance company bureaucrats.

Under the plan, if you like your current health insurance, nothing changes, except your costs will go down by as much as $2,500 per year. If you don’t have health insurance, you will have a choice of new, affordable health insurance options.

More about Obama’s request for input

Or go straight to the page where you can tell Obama and his team your story, why health care is important to you, or what you’d like to see an Obama-Biden administration do and where you’d like the country to go.

Canadian mechanic disabled from toxic paint fumes

A Canadian airplane mechanic develops Multiple Chemical Sensitivity and other environmental illnesses from exposure to paint fumes at his place of work, but when he becomes disabled from the toxic exposure, the government denies him benefits. This disabled worker claims that half his crew were affected, and that a total of 30 employees, who were disabled from toxic exposure in the hanger where they worked, have all been denied benefits.

Link

Every day is thanksgiving

Aloha my Beautiful Canaries!

Today is Thanksgiving in America, except I don’t do holidays so you are out of luck for a “Happy Thanksgiving” post.

This is going to sound corny but I think of every day as a day of thanksgiving. I don’t wait for one special day. Basically, if I’m not dead yet, it’s a day to give thanks. If I wake up and can assemble even the rudimentary of thoughts, it means I have options. And even if I’m in pain or brain fog or have any of the myriad Multiple Chemical Sensitivity symptoms, there is a part of me most grateful to have any feeling at all. If I hurt, I’m alive, and that’s a good thing.

I hope you don’t think this is too weird, but it’s rare that even an hour goes by in my life that I don’t remember that one day I will die. So even if I am having the very worst of days with my health issue, I am keenly aware that I’m alive, and besides, everybody has some sort of disability, and this is mine and I will make the best of it. Even though the planet is pretty messed up, it’s also pretty incredible and I am thankful for the opportunity to be here at all.

Be well, dear flock, today and every day. Be brave, be strong, be vocal. Sing your hearts out, make them listen. I love you guys and I’m truly thankful for each and every one of you.

Aloha,

Susie

Whose chirping about Multiple Chemical Sensitivity today?

Over the past couple of weeks, I’ve given a big boost to The Canary Report’s Resource page. I’ve added several sites to the categories on “Support for People with Multiple Chemical Sensitivity,” “Healthy Living,” and “Environmental Health.”

I also gave a boost to the “Blogs by Canaries” category, and wanted to share with you some blogs I’ve found written by peeps with Multiple Chemical Sensitivity:

I discovered two blogs written by a local girl from Oahu, Mokihana, now relocated to Washington state. Mokihana was an especially good find for me personally because of the local connection; if you’ve read my bio you know I was raised on Kauai and Molokai (with a step-father of Native Hawaiian ancestry, a horseman and cowboy who spoke fluent Hawaiian) and so my roots are local to da max. I greatly appreciate her perspective and her narrative, which is infused with the philosophy of traditional Hawaiian culture.

Mokihana (at left) has two blogs, both brilliantly creative and inspirational. Vardo for Two is about the day-to-day building of the “vardo,” a tiny, handcrafted safe house, which Mokihana and her love Pete are building on a trailer bed so that they can move to a safe location whenever necessary for Mokihana’s health. I’m in awe of the whole concept and process, and find myself wondering if they could build and market more units for peeps with MCS.

Mokihana also has a blog called Sam and Sally, which is the tale of her and Pete, but told in storytelling tradition through the characters Sam and Sally. This blog is just an awesome find for me personally because she’s done something so creative with writing that I don’t know whether or not to be elated or just plain jealous! It’s a really good read.

Adventures with Multiple Chemical Sensitivities: Tales of the Masked Avenger is a blog I discovered months before I started The Canary Report, but the Masked Avenger had gone dormant, so I did not list. But she updated her site a couple of weeks ago, so she’s on the blogroll now.

Sacredseed’s Weblog is written by Kate (at left), an artist whose blog topic is about sacred ceremony and ritual, but who “came out” a few weeks ago with her MCS story. I absolutely love her artwork, and although her blog topic is not MCS per se, she is now including that part of her life in her posts.

The Outgas Report is written by Daniel, “a guy who has realized the negative effect that outgassed chemicals have on my health and well-being. In particular,” he says in his bio, “computers have a profoundly negative impact on my health. I hope this blog helps others realize that some of their health issues may be caused at least in part by outgassed chemicals.”

Bloggers can never get enough comment love, so please click on over to the sites, Peeps, and give these Canaries your thoughts and support. Together, we are stronger!

Painting and photo: “Birds and Dots” by Lori Hutchinson

We’re on Alltop.com!

The Canary Report is now listed on the online news aggragator Alltop.com! In the world of blogs, this is huge and wonderful. But it’s not just The Canary Report that’s listed in Alltop’s new Environmental Health topic, some of our flock have their blogs listed, too! “The Oko Box Blog,” “I Learned Something Today,” and “Living W/Multiple Chemical Sensitivity” are listed! And organization blogs like “MCS America” and “Enviroblog” can celebrate, too.

I’m thrilled!!

Let me tell you how this all came about.

I recently received a request from Neenz Faleafine at Alltop.com to help her develop an Environmental Health category. The request stemmed from a friend I’d made on Twitter, Burt Lum, who lives on Oahu. Burt tweeted one day about the beautiful rain on a sunny day, and I responded that not only is it beautiful but it makes rainbows! Next thing you know, Burt is visiting The Canary Report, loves it, and contacts Neenz at Alltop suggesting that we be listed.

When Neenz contacted me, she asked what category might work best for The Canary Report, and I told her that Multiple Chemical Sensitivity is an Environmental Health issue. Well, Alltop didn’t have an Environmental Health topic yet, so she asked if I would be interested in gathering together some feeds to launch the topic. I jumped at the chance! I was so excited to help develop this very important topic.

I submitted a bunch of feeds that I thought would work for Environmental Health– some did, some didn’t– and Neenz added some feeds that I had never seen before: she knows her stuff! For those of us bloggers hunting for topic inspiration, or for anyone doing the rounds to stay up-to-date on news and information about MCS and Environmental Health in general, you can’t beat this group of links on Alltop.com!

Mahalo to Burt for his matchmaking and mahalo to Neenz for putting together a great Environmental Health topic on Alltop! I really appreciate all your support not just for The Canary Report, but for all the sites promoting education and awareness about Environemntal Health. Aloha!

Who’s chirping about Multiple Chemical Sensitivity today?

Glenda at Writing Stories About Real People, an eclectic blog chock full of interesting topics, writes about a tough week with her chemical sensitivity. In her post entitled “Indoor pollution is killing me!” she says:

This week, although I’ve gone as green as possible in my house, we are having a renovation done and after the plumber had come to put in the pipes for the washing machine, I had the worst attack I’ve had in many years. Turns out it was the glue used on the PVC piping. The harsh chemicals took my breath and I had to go outside to breath[e]. We closed off the new laundry room, placed an air filter machine in the living area but I had to retire to my little cubby hole of a room with my own air cleaner which runs day and night, close my door and hibernate.

The Windsor Star talks to Susan Jasper, vice-president of the Myalgic Encephalomyelitis/ Fibromyalgia Society of Alberta (ME/FM), who has fibromyalgia.

Q: How are ME/CFS [Chronic Fatigue Syndrome], fibromyalgia and multiple chemical sensitivity related?

A: They are all distinct, but the reason we lump them together is we think they’re environmentally linked, in the sense that people are affected by their environments more than (with) other conditions. Usually ME/CFS is post-viral, while fibromyalgia is more commonly related to physical trauma, like a motor vehicle accident or a multiple head and neck trauma, and then the pain spreads. Multiple chemical sensitivity can start on its own, for example if you have a history of being in a sick building, where there’s little ventilation and chemicals from the office such as toner or paint. It starts as an exposure problem that generalizes.

MCS America posts an informational flyer on the Quick Environmental Exposure and Assessment Inventory, a standardized questionnaire developed by Dr. Claudia Miller that assists researchers and clinicians when evaluating patients for chemical sensitivity.  It measures exposure levels and symptom severity and estimates the life impact of a chemical injury.

Erin Brockovich investigates brain tumor cluster

Erin Brockovich, the environmental activist portrayed by Julia Roberts in an Oscar-winning movie, met with people in Cameron Monday night. KMBC-News clip:

Report at MyCameronNews.com:

Brockovich speaks to Cameron residents concerned about brain tumors

Approximately 200 Residents of Cameron, Mo. gathered in the gymnasium of the Cameron High School in the hopes that community activist Erin Brockovich would lead them to answers. After feeling unsatisfied with answers from government agencies such as the Environmental Protection Agency, Missouri Department of Health, the Center for Disease Control and the Department of Natural Resources who stated that the number of brain tumors in the area were below statistical rates, Brockovich was welcomed with open arms in hopes of finding a reason for the community’s recent health scare.

Brockovich opened her town hall meeting by stating, “I won’t have all of the answers you are looking for tonight. It will take a long time to find out what is causing the problem here. But I can say that I am very uncomfortable with what I am learning.”

Link to full story at MyCameronNews.

Let’s educate Obama and McCain about MCS

MCS America asks the public to Tell the Presidential Candidates About MCS.

Now is the time to begin educating the presidential candidates about multiple chemical sensitivity (MCS) and its devastating effects on the individual, the community and our nation.  Let them know funding is needed for programs that educate both health care professionals and the general public about MCS, a committee is needed to help coordinate health agency research, promote the exchange of information, hold federal agencies accountable, and give advocates a voice in policy decisions, and more research is needed as it offers the greatest prospect of returning people with MCS to healthy, productive lives.

Let our candidates know we are watching them and their actions with regard to MCS as we decide who to elect.  Write your own letter or download our pre-designed letters and send one [each to Sen. Obama and Sen. McCain].

View and Download Sample Letters.

Link for more information.

Obama’s plan to empower Americans with disabilities

“We must build a world free of unnecessary barriers, stereotypes, and discrimination …. policies must be developed, attitudes must be shaped, and buildings and organizations must be designed to ensure that everyone has a chance to get the education they need and live independently as full citizens in their communities.” — Barack Obama

Barack Obama and Joe Biden’s Plan

Barack Obama and Joe Biden’s comprehensive agenda to empower individuals with disabilities fits in with the campaign’s overarching message of equalizing opportunities for all Americans.

In addition to reclaiming America’s global leadership on this issue by becoming a signatory to — and having the Senate ratify — the UN Convention on the Rights of Persons with Disabilities, the plan has four parts, designed to provide lifelong supports and resources to Americans with disabilities. They are as follows:

First, provide Americans with disabilities with the educational opportunities they need to succeed.

Second, end discrimination and promote equal opportunity.

Third, increase the employment rate of workers with disabilities.

And fourth, support independent, community-based living for Americans with disabilities.

For More Information about Barack’s Plan

Read the Full Plan
Read the plan on Autism Spectrum Disorders

January 29 Conference Call with Rep. Jan Schakowsky and Disability Policy Committee

Read the Transcript from the Captioned Call

Poverty and Multiple Chemical Sensitivity

Blog Action Day 2008: Poverty

Blog Action Day is an annual nonprofit event that aims to unite the world’s bloggers, podcasters and videocasters to post about the same issue on the same day. The aim is to raise awareness and trigger a global discussion. Blog Action Day 08’s topic is POVERTY. Here is my contribution.

Coping with Multiple Chemical Sensitivity is a challenge on every front in a person’s life. It impacts employment, housing, social activity, personal relationships, personal care, eating habits, exercise, recreation, and leisure. Health care becomes confusing and disorienting because medical doctors do not recognize MCS and therefore do not know how to help. To add insult to injury, some MDs believe MCS is psychosomatic, and either dismiss complaints or send the patient off to the shrink.

And when people with MCS are forced to seek out alternative health practitioners, it’s a crap shoot. While most practitioners– acupuncturists, nutritionists, dentists, and others– have good hearts and surely want to help, chances are pretty good that the patient will be led on a wild goose chase, and waste precious financial resources on alternative therapies and supplements, hoping for that magical cure.

But a cure for MCS is most likely going to be elusive. After all, MCS is not a disease or allergy, it’s a reaction to low level poisoning from toxic chemicals. So the more practical course of action might be for the sufferer to find safe housing and employment, stay away from toxic friends and family, dump toxic clothing and replace with natural fabrics, eat organic foods, buy a HEPA air filter and vacuum, find a good water filter, move to a place with cleaner air. But how easy is that course of action for anyone let alone someone who is sick with depleted resources?

So you can see how MCS can catapult a person into poverty. When forced to leave employment because the air is too toxic to breathe, there is no paycheck. When there is no social or familial support system and no safe housing, a person is out on the street. If there’s not sufficient money for fresh organic food, nutritional supplements, air and water filters, and a HEPA vacuum, then a person’s health further deteriorates. And a life on that edge can very quickly spiral into poverty.

This is why too many people with MCS are sleeping in cars or in aluminum trailers in a friend’s back yard. Many who can’t find safe housing or employment hunker down, strip down, go zen, go without, and struggle to adapt to the newfound state of limited resources. This is the world of poverty, and if anyone with MCS thinks this scenario isn’t a heartbeat away, they are fooling themselves. There is no safety net for people with a health condition not recognized by the government or mainstream medical community.

Such is the life of canaries. It’s not just sensitivity to toxic chemicals that people with MCS live with, it’s acute sensitivity to the social injustice of a negligent health care and governmental system that refuses to even acknowledge there’s a problem.

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If you’d like to learn more about Multiple Chemical Sensitivity and poverty, Grist: Environmental News and Commentary covered the topic in 2006.

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Meet Jessica, she won over the governator

In 2005, Jessica Assaf built a campaign to lobby senators and the California governor’s office to pass SB484, a bill that requires cosmetics manufacturers to inform the Department of Health Services if their products contain carcinogens or other toxic substances.

Jessica was shocked to learn that many personal care products contain chemicals that have been linked to cancer and reproductive ailments. Working with the Teens for Safe Cosmetics Campaign, Jessica created “Operation Beauty Drop” during which large bins were placed in public malls for teenagers to drop off their toxic beauty products. The collected products were sent back to the manufacturers with a petition signed by the teens demanding the reformulation of products without toxic chemicals.

As support for Jessica’s program grew, so did her belief that she could institute change on a larger scale and in individuals’ lives. With four of her friends, Jessica lobbied senators and the California governor’s office to pass SB484, a bill that requires cosmetics manufacturers to inform the Department of Health Services if their products contain carcinogens or other toxic substances. After the successful and unexpected passage of SB484 on October 7, 2005, she organized a Teens for Safe Cosmetics Summit educating teens from around the country on how to conduct their own safe cosmetic campaigns. Over thirty students took part in the workshops and began their own projects in their communities.

Link

Chronic illness and your personal identity

When struggling with chronic illness, it’s tough to keep it from swallowing up your whole identity. It’s not just the battle we have going on in our own heads, it’s also how other people view us and relate to us when they take in the social cues: uh-oh that person is different. When someone is seeing just the illness or disability in you, it becomes almost impossible to get them to see the real you. I hate that!

I came across two bloggers this week who tackle the subject head on.

Lou Cheese at Living w/ Multiple Chemical Sensitivity blogs about going out in public with a respirator and having his true identity erased by passing strangers to the point of becoming “invisible”:

The hateful glaring people notwithstanding, I became invisible. Nobody would look at me, nobody would talk to me. I understood it completely, after all I was one of them once. But at the same time it was very strange, because I was still the same guy, I just had to wear a respirator when out in public now. And that’s when it snapped, I realized that most disabled people, regardless of what got them there or what they’re dealing with now, just consider themselves a regular person who simply has to do a couple of things differently. We’ll take the extra challenges we have as a way of life and keep pushing through like we always did. We don’t want to be treated as special, be pampered or patronized, but more than anything else, we don’t want to be ignored. We don’t want to be made invisible, because one way or another, we will always be here, right with you and everyone else.

And Kitrona at her blog, Warning: Schematic Inaccurate, says, “To help aid those of you who wonder how to interact with a chronically ill person, allow me to present the Ten Commandments.” All ten are fabulous in-your-face commandments, written by Susan Williams of PublicHealthAlert.org, and the 10th addresses the identity problem of being seen only as “the sick person” :

10. Thou Shalt Get To Know The Person Behind The Illness.

The illness may be a part of us, but it’s not a part of who we ARE. We want to be known as more than “that sick person”. You may discover that we have a wickedly funny sense of humor, a creative imagination, musical talents, or any number of things that better describe who we are, and what we would rather be remembered for. (It makes for better gift ideas too — rather than presenting us with yet another self-help book on the power of positive thinking, now you can give us a CD from our favorite singer or movie of our favorite actor instead.)

Most of all, please remember that the chronically-ill person is more than worthy of love, friendship, and support. Most chronically-ill people I know are the toughest nuts I have ever met. Indeed, I have come to believe that a chronic illness is not for wimps – rather, only the toughest of the tough can continually face the struggles of life while battling a debilitating disease. That kind of grit deserves nothing less than pure respect and admiration, even from our toughest critic — ourselves.

Go visit Lou and Kitrona’s blogs and read the full posts for more meaningful insight on this topic.  And when you read Lou’s full post, you’ll know why I chose Superman in a wheelchair for the photo!

Photo by A. Currell

Short film to document housing for people with MCS

Here’s the trailer to a short film, not yet finished, called Homesick: Living with Multiple Chemical Sensitivity.

The upcoming hour long documentary is produced and written by Susan Abod. You might recognize the name from a post I did yesterday on Abod’s short film Funny You Don’t Look Sick.

The quality of the preview is poor; I look forward to the finished work!

Homesick: Living with Multiple Chemical Sensitivities is an hour long video documentary produced and written by Susan Abod that is now in the process of completion. In Homesick, Susan goes on the road to find out how other people around the country are coping with MCS and dealing with the difficult problem of finding safe housing. She visits their homes and witnesses their daily struggles. They come from all walks of life and live in diverse dwellings that include tents, a house on stilts and a teepee.

Susan’s own journey as a person with MCS traveling from home to home is the connecting thread between these stories. These poignant portraits and her narrative provide a unique, compassionate and even at times humorous perspective on this growing crisis.

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Update

It’s been seven years since the footage [in the clip above] was first taken. Susan’s own health and housing crises interrupted her work on Homesick. Susan recently moved to the Santa Fe area to see if it would improve her own failing health. Yet, finding safe housing still eludes her. In the meantime, she has reconnected with many of the people she originally interviewed and has learned how they have been managing over the years. Susan will be weaving these updated stories along with her own to complete Homesick.

Link to learn more about the film

Link to YouTube clip

Thanks, Linda!

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