Disability Rights | The Canary Report

Checklist for physicians seeing patients with Multiple Chemical Sensitivity

Posted by Susie

Sep 052011

Multiple Chemical Sensitivity patients are advised to ask physicians for specific items during an office visit or examination, rather than merely asking for “accommodations.”

MCS America publishes a check list for physicians: Accommodating Multiple Chemical Sensitivity in the Doctor’s Office.

While a chemical- and fragrance-free office would be the most ideal situation, there are still simple ways to accommodate a patient with MCS. It is best to ask the patient what would work for them based on their knowledge and history of MCS. Patients are advised to ask for specific items, rather than merely asking for “accommodations.”

Setting the Appointment
• Provide a first appointment of the day when not many other patients are around and wait time will be minimal.
• Ask the patient what would help to make their visit more comfortable.

Before the Appointment
• Flag the patient’s chart for “allergies.”
• Remove candles, air fresheners, and other scenting devices.

On the Day of the Appointment
• Allow the patient to wait outside or in vehicle when weather permits.
• Provide an isolated room for the patient to wait where contact with other patients is limited.
• Allow the patient to enter through the back door or staff entrance to avoid contact with other patients.
• Refrain from the use of any scented personal care products the day of the appointment.
• Assign unscented staff to work with the patient.

During the Appointment
• Check with the patient before coming into contact with them or administering any medications, including the use of alcohol and latex gloves.
• Provide oxygen, if/when needed.
• If the patient unavoidably experiences a reaction to an exposure, remove the offending substance or person immediately. Move the MCS patient outdoors or to another room with separate ventilation.
• Refrain from using cleaning products, aerosols, and office equipment such as faxes and copiers while the patient is in the building.
• Listen attentively to the patient. They usually know what they are reacting to and how to best remedy the situation.
• Refrain from creating tension and feelings of being misunderstood by telling a patient “try not to think about it” or “relax.” These suggestions are no more effective than telling a diabetic not to think about her low blood sugar emergency. Corrective action is the only way to remedy the emergency.

PDF of full article.
Photo by benchilada.

Letter: I wanted to thank you for your help and advice

Posted by Guest Blogger

Aug 082011

My friend Mary says she could not have won her hearing without your help, advice and website.

Letter to the Editor by Joyce Jallo.

Dear Susie,

I wanted to thank you for your help and advice for my friend Mary. She also wanted me to thank you. She just won the [social security disability insurance] hearing and now just has to wait for 4-6 months. Mary printed info off of your website and educated her doctor so her wonderful doctor wrote that she has Environmental Illness/Multiple Chemical Sensitivity in her chart and with all of her records over the past 8-9 years, she won. She took your advice and quit work and had several meetings to make sure she would get enough money to keep her home and started the paperwork. She feels a lot better now that she is not working and is slowly getting her house safe.

Mary says she could not have done it without your help, advice and website. Bless you for all of your hard work and helping my good friend. Mary’s whole world changed after reading the Washington State Proclamation. That just goes to show that they really do help educate people.

Blessings,
Joyce Jallo

Woman with Multiple Chemical Sensitivity describes the difficulty finding safe housing

Posted by Susie

Jul 112011

“Knowing you have a right to accessibility is very different from being able to get that accessibility, especially when you are dependent on people’s good will and you have no guarantee that the future will not bring new chemical injuries.” –Client of the Centre for Equality Rights in Accommodation, Canada

The Centre for Equality Rights in Accommodation reports on a client trying to find environmentally safe housing. CERA is a not-for-profit in Canada (offices in Toronto and Ottawa) established to ensure that human rights protections in housing are effective for low income households and to address systemic barriers to accessing affordable accommodation.

These are the experiences of one of our clients, Jane, who lives with environmental sensitivities and has been struggling to find safe housing.

I had no idea that when I started experiencing increasing migraines, sudden weight gain, rashes, coughing, IBS, difficulty concentrating, irritability, and other symptoms at work, that I was developing MCS/ES. Very small amounts of chemicals found in fabric softener, air freshener, perfume, scented personal care products, detergents, pesticides and more, were toxic to my body — chemically injuring the organs of my body. At first, I would be fine when I returned home, but over many months, the exposures to chemicals caused chronic MCS/ES and my home was no longer safe. I needed, what is known in human rights as “a scent-free/chemical avoidance” environment. And so I began the search for safe housing.

My first attempt was completely unsuccessful, mainly because it takes a great deal of research to know what is safe and what is not safe. I can tell you now that living near ‘brownfield’ remediation is not safe, living near a major street or highway is not safe; neighbours using fabric softener, detergents like Tide or Gain and venting these chemicals out of hot dryers; pesticide use in the neighbourhood, industry, rail lines and gas stations nearby; and the list goes on. Also, the house, itself, was not safe. Air freshener residue is very hard, if not impossible, to remove; products such as laminate and carpets ‘off-gas’; mold can make life impossible; and, again, the list goes on.

Read full report.

Thanks, Linda!

Chemical Sensitivity advocate honored for environmental stewardship

Posted by Susie

Jul 042011

Mary Lamielle is the founder and executive director of the National Center for Environmental Health Strategies, an organization in New Jersey that works to improve the lives of people affected by chemical and environmental exposures.

The Star Ledger magazine "Inside Jersey" showcases Mary Lamielle, right, and husband Charles in its coverage of the Jefferson Award's ceremony. (Photo courtesy of the Star-Ledger)

Mary Lamielle, Public Interest Partners member at the National Institute of Environmental Health Sciences, was honored for her environmental stewardship June 8 in Newark, N.J., where she received the PSEG (Public Service Enterprise Group) Environmental Stewardship Governor’s Jefferson Award.

Since 2007, the Jefferson Award program has recognized citizens who make extraordinary contributions to their communities and celebrated the power of volunteerism in New Jersey to improve the quality of life there. This year’s awards honored 19 individuals, selected from more than 1,000 nominees.

A tireless advocate for people disabled by chemical sensitivities

Lamielle is the founder and executive director of the National Center for Environmental Health Strategies (NCEHS), Inc. in Voorhees, N.J. NCEHS is an organization that fosters the development of creative solutions to environmental health problems, pursuing a mission of protecting the public health, and improving the lives of people affected by chemical and environmental exposures. She was nominated for the Jefferson by Claudia Miller, M.D., who co-authored the landmark study of chemical sensitivity and intolerance for which the New Jersey Department of Health was awarded the World Health Organization’s Macedo Award; Diane Reibel, Ph.D., a professor at the Jefferson Medical College; and Jane Nogaki, former vice chair of the New Jersey Environmental Federation.

In her letter of nomination, Reibel wrote, “For thirty years through her volunteer efforts, she [Lamielle] has been a passionate educator and advocate on behalf of people sick from chemical exposures and a protector of public health” — often, Reibel noted, as Lamielle struggled with her own illness caused by environmental exposures.

Reibel, who first met Lamielle 24 years ago, pointed to her friend and colleague’s many pioneering accomplishments. These include initiating the landmark N.J. Study of Chemical Sensitivity; providing invited congressional testimony on the Indoor Air Quality Act; securing the first congressional funding for research on chemical sensitivities; serving on the expert panel convened to examine this issue; working to secure U.S. Department of Housing and Urban Development recognition of chemical sensitivities as a disability; and securing acknowledgement of chemical sensitivities as a disability in the Americans with Disabilities Act.

An honor recognized nationwide

The Jefferson Award program is administered by the N.J. Governor’s Office of Volunteerism, the Star-Ledger newspaper, and the Community Foundation of New Jersey. PSEG, Verizon, PNC Bank, and Becton, Dickinson and Company (BD) are corporate underwriters of the awards. In addition to environmental stewardship, the program recognizes individuals, businesses, and groups involved in activities ranging from arts and education to health care and community services.

Lamielle was one of four New Jersey nominees invited to the Jefferson Awards ceremony in Washington, D.C., June 20-22. Highlights included a visit with one of their state’s senators, a visit to the White House, and two evening events, one of which was the black tie Jefferson Awards for Public Service emceed by Kathleen Kennedy Townsend, daughter of Senator Robert Kennedy and niece of award cofounder Jacqueline Kennedy Onassis. National honorees this year include Supreme Court Justice Ruth Bader Ginsburg.

Lamielle is one of the 25-member Public Interest Partners, which is made up of representatives of diverse groups, including disease, disability and environmental education, and advocacy organizations. Members offer NIEHS community perspectives on the research agenda of NIEHS, and serve as a key contributor to the translation of research findings for the public, policy makers, and private foundations. Lamielle has been invited to participate in the 2011 NIEHS Strategic Planning Stakeholder Community Workshop July 12-14 in Research Triangle Park, N.C.

Lamielle calls for more answers

“I hope that the Jefferson Award for Public Service will heighten visibility of what has, for decades, been an invisible public health problem,” Lamielle said, following the award ceremony. “Eighteen years ago, members of an expert panel on chemical sensitivities and intolerances, convened by the Agency for Toxic Substances and Disease Registry, with directed congressional funds, recommended forming an interagency committee across [or which would consist of representatives of] disability, regulatory and research agencies, and clinical research using an environmental medical unit. Our organization continues to call for an interagency committee to catalyze a federal agency response to address these disabilities.”

“The recently released Action Agenda for the Centers for Disease Control and Prevention National Conversation on Public Health and Chemical Exposures [see related story] recommends research on chemical sensitivities and intolerances using an environmental medical unit. Nearly two decades have passed. Millions more Americans report serious illness and disability due to chemical exposures,” Lamielle continued. “It’s time to act.”

Link

Moving to a new “environmentally sensitive” housing unit in Ottawa!

Posted by Contributor

Jun 072011

Imagine my surprise when two weeks ago I received a phone call saying a unit had become available at Barrhaven, one of the specially built units that have the potential to meet most of my housing needs!

By contributor Linda Sepp.

Linda standing in the woods with a cap on.

This photo was taken the day before my birthday last July, after being at the cabin about three weeks.

It’s already June, over a year since I was forced from my previous home without another place to go to due to my disabling medical condition of severe Multiple Chemical Sensitivities, Environmental Sensitivities, Fibromyalgia, and Electro HyperSensitivity, none of which is properly recognized in this country. It’s almost a year since I (barely) made it to the summer cabin owned by some in my family. And half a year since my father passed away.

Despite a lot of struggle, I made it though winter with the help of a local woman and her family, some assistance from several canaries, a few friends in Toronto, and my uncle’s wife in Massachusetts (who had been paying the electric bill for the cabin for years and continued with my winter heating costs), as well as the hopes and prayers of many. I’m eternally grateful.

Little bear on hind legs, one paw out steadying himself on the screen door, looking right at camera.

Yearling bear climbing on the hand railing beside the door at the cabin.

I also was blessed by the visits of a young screech owl, wild turkeys, numerous other birds, squirrels, chipmunks, and for a short time some young raccoon siblings. I’ve learned a lot from these creatures and will treasure the photos I was able to take, as otherwise the memories would likely be lost in brain fog. The other night I was visited by a bear, a yearling, who was looking for food, alone. I got a blurry photo of him as he was about to climb on the hand railing beside the door to eat the moths circling around the light.

My challenges at the cabin have been great. No running water, no indoor toilet, no fresh organic food close enough to get for myself and too far for others to drive regularly, no insulation, no proper storage for the things I couldn’t have near me but needed to live, inadequate winter clothing, getting snowed in, and more challenges that should not be endured by anyone in a rich country like Canada, especially those with disabilities.

Through the course of it all, I discovered my situation does not fit into any official safety net mandate. There are only seven medically required housing units built for people with environmental sensitivities in Canada. I’ve been on a wait list since 2006, maybe 2007. Meanwhile, I’ve gone from a moldy home to an apartment balcony, and spent winter in a summer cabin. But despite the healing effects of the external environment at the cabin, I’ve lived here with the threat of being forcefully removed by a certain member of the family. The need to find a safer place has been a constant worry.

So imagine my surprise when two weeks ago I received a phone call saying a unit had become available in Barrhaven, one of the specially built units that had the potential to meet most of my housing needs! They wanted to know if would I please go there within a week and spend a night or two to see if it was actually suitable for me (people with MCS/ES are affected by different things, and some people are not able to tolerate the materials in these units, or the noise of the air handling system).

I actually cried for two days, mostly since the location is in the middle of a suburb that has grown around it since it was built and I thought for sure I would lose my ability to go outside for fresh air because of the toxic laundry product fumes from neighbourhood dryer vents, a problem I’ve had previously. Being able to be outside here at the cabin– to witness the seasons, the wildlife, and most especially to breathe the fresh air– has been so important to my recovery. The idea of being locked inside again was devastating! I had my heart set on finding a place near the middle of nowhere, where I could plant an organic garden and to try to be as self sufficient as possible, since finding people with the time and inclination to help is sometimes impossible. So this came as a shock to me!

Yet despite the initial disappointment , I was ready to jump at the opportunity to have a safe enough home to live in, one with safe running water, indoor toilet, places to put things I couldn’t be in the same room with safely, a home where I wouldn’t be threatened with having to leave without much more than a moment’s notice, a home where the structure wasn’t falling apart, a home where I could heal the trauma of living under siege for so many years. But first I had to find help to make the trip to check out the unit.

I am blessed that my friend (guardian angel and lifesaver) here was able to re-arrange her plans in order to drive me there and back, and able to find places in the Ottawa area to spend those two nights, as staying with me there was not an option. There aren’t many people in the world who would do something like this for someone they barely know! She is truly an extraordinary and special woman.

Preparing and packing for the three-day trip was difficult: food and water, my cot, my cooking utensils, toilet paper and other essentials needed to be taken. Then the day came, and three hours into the trip I was so sick I thought I wasn’t going to make it. I had to ask to stop, got out and was barely able to walk around, trying to get some air. As we continued, the highway got bigger and busier, and cell towers started appearing at the sides of the road, sending piercing pains through my head. Things were not looking good.

We eventually arrived there, about four hours after leaving the cabin. It was very strange to be in a place with so many other people again. “My” unit was at the very end, with trees and a grassy area between the building and the train tracks, and there was a small shared garden and patio stone area in front with a tall evergreen hedge between this area and the baseball field on the other side. It was not as bad as I feared it could be.

Linda in her new housing unit, looking right at camera, behin dher the walls are bare with ventilation ducts running along the ceiling.

Testing out my new home!

Inside reminded me of an Ikea loft. Polished concrete, bricks, and wood paneling. I was perplexed by the lack of kitchen cabinets. Apparently mold was a worry so none were installed. I’ve lived with open shelving before, and things get dusty and greasy, so this was a concern. The air wasn’t too bad though, although it seemed the Heat Recovery Ventilation was pushing some fragrance through it. That was disappointing as the air could have been better filtered.

I was able to determine that there wasn’t anything life-threatening there, so it would be ok to remain overnight alone after removing the CFL bulbs that I could and replacing them with regular bulbs my friend went out to buy for me (which I had to scrub down to remove the fabric softener contamination from!). We made plans with my friend that she’d drop by the next afternoon to see how I was doing. I unpacked a few things and made a cuppa coffee! (Fair-trade and organic of course.)

The coffee revived me a bit, and I felt strong enough to go outside and look around. I wanted to see who my neighbours would be, and was able to meet the ones on my side of the building. I went back inside my possible new home, knowing a little more about the area, and settled in. When I felt a bit better, I started exploring. I was surprised and pleased that I was able to do this, after a long trip and all the exposures! I found several storage areas that did not quite agree with me, so I kept those doors shut. But the main living room and kitchen area were fine for me! The air system though was very noisy. So noisy that I hardly heard a train go by 50 feet away, and I hardly heard the airplanes flying directly overhead. Paradise not. But the air in the living area was good. I was not getting any sicker or feeling any worse. And this was a great sign!

I dragged my cot and bedding upstairs and set it up in the small bedroom with my little portable air purifier. There was something not quite right in the larger bedroom but not life threatening; I thought of ways to work with what was there, with what I needed, and what I was capable of doing to make it work. This was promising!

When I woke up the next morning and wasn’t completely dragging ass, I knew I’d be ok there, that I’d found my next home! As long as water filtration is installed, I believe I can make it work. And if I can find safe containers to grow food in, and certified organic soil around Ottawa, then I could even grow some herbs and greens there!

That first morning in my next home, I sat to meditate, and prayed for help to heal and release much of the trauma I’ve been carrying around. I’d brought my laptop and the DVD of my father’s memorial service, and as I sat on the little stool I’d brought, I realized it was exactly six months since he’d passed away. Bittersweet. If I could change anything, it would be that he’d have had the peace to see me settled in a safe home. I move there at the end of the month. I think some of those earlier tears were tears of relief.

I’m back at the cabin now and focusing on what I need to do in preparation for my move to Barrhaven:
• Find a safe and reputable long distance moving company to move my things from storage in Toronto to my new home near Ottawa, and hope the Ontario Disability Support Program will cover the actual cost.
• Find help to get myself and my things from the cabin to Barrhaven.
• Find a new all-metal top loading washer and dryer, and funding source to acquire them.
• Find a safe shower curtain (oh to be able to have a safe shower or bath when I need one!).
• Find help to put my old car in for a check-up and renew my license plate before I go.

Oh to have a home again! A home where I am not threatened by other people or their product use! A home where I can heal.

~~~

Linda blogs at Life with Multiple Chemical Sensitivity: A search for safe housing, where this post is originally published.

Changes in the Americans with Disabilities Act may affect people with Multiple Chemical Sensitivity

Posted by Contributor

Apr 282011

The Americans with Disabilities Act Amendments Act, effective May 2011, may make it easier for people with Multiple Chemical Sensitivity to secure accommodations at work.

By contributor Michael J. Walkup, Esq.

Michael J. Walkup, Esq.

Effective May 24, 2011, new changes to the Americans with Disabilities Act, called the Americans with Disabilities Act Amendments Act (ADAAA or Amended Act), will go into effect after implementation of federal regulations.

The previous Act had been misinterpreted by the U.S. Supreme Court shortly after it’s enactment in the early 90′s to place the focus on first establishing if the individual worker was “disabled enough” to qualify under the Act, instead of the Congressional intent of focusing on the discrimination and the reasonableness of accommodations that would be required to allow the worker to function in the job.

People with Multiple Chemical Sensitivity were universally unable to meet the definition of disability due to lack of official recognition of MCS by the mainstream medical community, and their cases were dismissed.

Under the Amended Act, this will no longer be so much of an obstacle. The focus has now shifted to determining if discrimination has occurred and if it there is a reasonable method of accommodating the employee without undue burden to the employer, rather than analyzing the claimed disability of the employee. This should make things a bit easier for people who are still trying to hold onto their jobs who have MCS.

Although many MCS sufferers will still require such extensive accommodations that it may not be realistically possible for the employer to meet their needs, there are others for whom some simple things, such as not placing their workstation near other employees who wear fragrances, allowing them to work next to a window that can be opened, not placing them next to the photocopier, or allowing them to have a portable air filter machine in their workstation, may be possible. It may also be feasible to do some jobs, or at least portions of some jobs, from home.

Should you require an accommodation, you should request it in writing and cite the Amended Act as the basis for your request. Then try to get a meeting with the employer to see if you can jointly craft a solution. You may wish to consult with an attorney to assist you in trying to work things out with your employer.

~~~

Michael Walkup is an experienced disability practitioner with more than 25 years experience in the disability law field. In 2001, he became disabled due to Multiple Chemical Sensitivity (MCS), Chronic Fatigue Syndrome (CFS) and Fibromyalgia Syndrome (FMS). He now provides a service to advise clients with potential disability claims who have MCS, CFS and/or FMS. As these programs and law are usually federal, he is able to practice in all 50 states and, therefore, represent clients regardless of location.

Michael is a long time Sustaining Member of the National Organization for Social Security Claimants’ Representatives, the only national body for disability representatives. He is also certified as a Federal Trial Lawyer and is admitted to the U.S. Court of Appeals for Veteran’s Claims.

Michael would welcome the opportunity to possibly help with disability claims. For more information, visit his website MCS Legal Help at walkuplaw.com. Contact info: email MJWalkup@Amertech.net or call 866-880-4878.

Letter: Alternative physicians opting out of Medicare no longer allowed to provide full services to patients

Posted by Guest Blogger

Apr 212011

I’ve been notified that any alternative medical practice, which has opted out of Medicare, will now be prohibited from writing prescriptions, ordering labs, x rays, any tests, or making referrals to another doctor, further marginalizing people with Multiple Chemical Sensitivity from a doctor’s care.

Letter to the Editor by Catherine Hollingsworth.

Yesterday I received a call from my metal toxicologist, who is also an MD. She practices at her own alternative medical clinic here in Anchorage. She has been my rock and understands MCS, porphyria and even uses Key Pharmacy in Seattle for glutithione Pall protocol. The subject of this call was that she was notified by Medicare that any alternative medical practice, which has opted out of Medicare, will now be prohibited from writing Rx, ordering labs, x rays, any tests, or making referrals to another doctor.

Needless to say, I am shocked, although I have seen the writing for some time.

At this point, I will be out of thyroid meds, migraine meds, and my protocol in a couple of weeks, and without a doctor to turn to in the state of Alaska. This will begin to impact my “safety net” shortly as I must obtain supporting letters from an Alaska doctor for housing, public assistance and other needs.

I called my care coordinator this morning and told her what was happening to my case, she was stunned at the abruptness of this. After making a call to my doctor herself, the care coordinator confirmed this is so and that I would, indeed, be without a doctor now.

So, I wanted to let you know this has already happened here, apparently, I am the first at this practice to find I couldn’t even get my IMitrex filled and then found the reason for that.

Perhaps you have been aware of this or have others who are being further marginalized from a doctor’s care. Please do let the other canaries know that IF they are currently paying cash for any doctor who has opted out of Medicare, they had better stock up on their Rx’s fast or face a gap without medicine.

Catherine Hollingsworth
Alaska

Dr. Gott gets it wrong about Multiple Chemical Sensitivity

Posted by Susie

Apr 162011

Physician with syndicated column tells reader suffering from Multiple Chemical Sensitivity that MCS is “controversial” and that “there has not been much research done since the late 1990s.” Dr. Gott is wrong on both counts and more.

Dr. Peter Gott

Dr. Peter Gott is a nationally syndicated columnist with a large audience. According to the United Feature Syndicate Newspaper Enterprise Association, Gott, a general internist in practice in Connecticut since 1966, has 6,000 readers write to him each month. One such letter carried at The Monterey County Herald and probably 100s of other newspapers last week started like this:

Dear Dr. Gott: Multiple chemical sensitivity (MCS) is a crippling problem for those who suffer from it. I would like to educate people about the problem because most people think that I’m crazy or that “just getting fresh air” will resolve the problem. The effects of chemicals used in personal and laundry products act as neurotoxins on my system, resulting in neurological difficulties — diminished cognitive function, loss of equilibrium, fogging vision, etc. Local drugstores and laundry-detergent aisles are lethal vats of poison for MCS sufferers. I am a massage therapist and have asked clients to refrain from wearing fragrance, but I have found their use of fragrant laundry products more dangerous than cologne. In particular, dryer sheets are extremely poisonous and cannot be purged from the room just by airing it out. I urge people to investigate the toxicity of their laundry products.

To which the doctor answers with outdated information, parroting the chemical and psychiatric industries that Multiple Chemical Sensitivity is “controversial” and that “there has not been much research done since the late 1990s.” Admitting that he was “unfamiliar with MCS” before receiving his reader’s letter, he states, “There are plenty of online sources for information, but most refer to information more than 10 years old.” What kind of research is that to discover the current literature on MCS? How does that help the person suffering from MCS who needs some support? (I wish she could find her way to The Canary Report!)

Now dig this. A comment was left by someone using the moniker Brain Fan. I wonder if Brain Fan is a member of The Canary Report? Here’s what he/she had to say in response to Gott, quoting him along the way and destroying Gott’s position sentence by sentence (italics added for Gott’s quotations):

“Multiple chemical sensitivity (MCS) is a somewhat controversial topic.”

This is the design of the chemical industry and its front groups. As long as it’s “controversial” — as long as they can get media to just use the word controversial — it will BE controversial. Remember: it took 75 years to ban asbestos. Was it safe until it was banned?

“There are some who believe it is a true disease, while others argue that the immense variety of symptoms can often be explained by other, well-established disorders.”

Those who believe it is a real disease have taken the time to consider it. Those who don’t either haven’t taken the time or they have a stake in its denial. Attributing it to “other, well-established disorders” is a form of obfuscation to perpetuate the denial. Considering its mechanism of action, it’s no surprise that there is an immense variety of symptoms. There are any number of diseases that affect multiple organ systems. Additionally, MCS is proposed to be a new disease paradigm as noted below, so this charge is simply outdated and irrelevant. We cannot hold one disease process hostage within the confines of our knowledge of other disease processes.

“From what I was able to find, there has not been much research done since the late 1990s.”

With respect, you really must not have taken the time. The most promising scientific research has taken place after the 90s. A working theory has been proposed by Dr. Martin Pall based on his research and the previous research of others. His work on this has a chapter in a recent toxicology text published by Wiley. An independent research team in Rome has found biological markers that confirm his theory. This work is also informed and confirmed by the study of animal models of MCS. There have also been six genetic predispositions found for MCS. His work can be found here: http://thetenthparadigm.org/. Also note that his original paper on this, published in 2002, was subtitled, “The End of Controversy.”

“I did note that in a 1999 position statement by the American Academy of Allergy, Asthma and Immunology, the condition received a new name — idiopathic environmental intolerance. This is just the newest in a long history of name changes, including multiple chemical sensitivity, chemical injury, chemical sensitivity, environmental illness, sick-building syndrome and more.”

Just another deliberate obfuscatory ploy. The organizations responsible for the name “idiopathic environmental intolerance” were intentionally trying to remove the word “chemical” from the name while attempting to suggest that the causative factor is completely unknown. This is evasive semantics, not a logical proof against the physiological disease process. The disease is there whether we agree about what to call it or not. A rose is a rose by any other name.

“Being unfamiliar with MCS before your letter and knowing only what I was able to learn from research, I am on the fence about this condition. The condition might be real, but not enough research has been done regarding symptoms, diagnosis and treatment.”

Sadly, asthma, MS, allergies, ulcers, and many other physical ailments “might have been real” long before the medical establishment had an explanation for them and that establishment denied the reality of them before it did have an explanation. How awful it must have been for the sufferers of those conditions to have been treated with skepticism in the midst of their suffering. I do know how that feels.

There is a campaign to prevent the funding of research. The paucity of treatment is also hardly a witness against the condition: what diagnosis and treatment is there available for multiple sclerosis after all its years of recognition and study? That disease received the same skepticism as MCS at the beginning as it also did not fit with contemporary medical knowledge. For a thoroughly documented report of how the chemical industry is doing all it can to prevent the recognition and understanding of MCS, refer to this physician and fellow MCS sufferer:
http://www.mindfully.org/.

“There are plenty of online sources for information, but most refer to information more than 10 years old.”

This is a common talking point. Perhaps you’d like to divulge your source for this?

“I invite readers to send me personal experiences and any recent research that has been done.”

If genuine, this is truly appreciated. The progression of knowledge about this issue is truly an example of the best of science at work. Even for the layperson, researching the biological detail will have you putting together information from so many varied sources of study and you’ll find that not only does MCS share portions of etiologies of many “well-established disorders,” you’ll find those other disorders have common ground with each other as well, like MS, Huntington’s, Alzheimer’s, Parkinson’s, stroke, and more.

Bravo!

In Gott’s bio, the syndication association says Dr. Gott is “an old-fashioned family doctor with the outspoken fervor of a patients’ rights advocate.” Hmmmmm. Seems that precludes people with MCS. At the end of the column, Dr. Gott invites readers to send him personal experiences and any recent research that has been done on MCS. You can write to Dr. Gott c/o United Media, 200 Madison Ave., 4th fl., New York, N.Y. 10016.

Here’s the link to Pall’s research.

Here’s a document by Anne C. Steinemann, PhD, that lists over 100 citations for peer-reviewed journal articles that support a physiological basis for MCS. Research on Multiple Chemical Sensitivity (MCS).

Letter: Canadians with Environmental Sensitivities/Multiple Chemical Sensitivities have a right to vote

Posted by Guest Blogger

Apr 112011

The 2011 Canadian federal election will be held on Monday, May 2, 2011. People with disabilities have the right to access.

Letter to the Editor by Canuck Canary.

Elections Canada states that it has amended its legislation so that persons with disabilities have accessibility for voting. Elections Canada in Ottawa will answer request for information and will also direct you to the appropriate local Elections Canada office or your Returning Officer.

You can vote by special ballot, at an advance poll or on polling day. This means you can vote by mail. (The opportunity to vote electronically may also be available.)

As you already know, it’s always been an “interesting” experience trying to vote safely during an election!

You may want to tell your Returning Officer that Environmental Sensitivities is a recognized (non-evident) disability and that a Policy on Environmental Sensitivities exists at the Canadian Human Rights Commission website, as well as research documents on the Medical and Legal Perspective on ES.

The more people with Environmental Sensitivities that call Elections Canada, the more opportunities we have to be recognized and not ostracized in society.

Please take a few minutes to contact Elections Canada so that you can be accommodated during this election.

Elections Canada 1-800-463-6868; in the USA 001-800-514-6868 ; TTY 1-800-361-8935.

Wishing you a safe and successful voting experience in 2011!

Canuck Canary

Photo credit.

An update from Linda Sepp

Posted by Contributor

Mar 172011

I am now back online, still at the summer cabin, without running water or a bathroom, but my health is better because the exposures are low here.

By contributor Linda Sepp.

Linda Sepp

Thank you all for your support and kindness. It means so much to me. The Canary community is truly a wonderful one!

I am now back online and slowly finding my way around the internet again. A dear friend I met on facebook went to great lengths to get me an off-gassed laptop when I discovered I could get telephone service here and they had DSL on the line. So here I am again! I am very grateful to be so blessed.

I am still at the summer cabin, without running water or a bathroom, but my health is better because the exposures are low here. I still have symptoms of brain injury that haven’t healed, but my physical strength has improved a lot, and the brain fog is diminishing.

I heard a crash, went out, this little guy was trying to make off with the bag of fat but landed on the plate feeder. He/she didn't leave when I went close. I eventually tried to get the bag back for the other birds, but he wasn't letting go! Eventually I picked up the bag and the owl came with it. I went back under the tarp, put him down, got my scizzors to cut the bag from his claws, he sat there not letting go! Beyond surreal! I cut up some pieces for him and hung the bag back up. He flew off...

Life is getting a bit easier, as of very recently, I am no longer spending all my time on the most basic survival needs and then recovering from that. Oddly enough, I can speak way better than I can think or write!

A local woman has been helping me with my survival needs, I wouldn’t have made it without her. She and her daughter shop for me, she empties and cleans her bathroom every week so I can safely shower there once a week, and get my water there twice a week (it’s a 25 km round trip each time). There is no way to properly express my gratitude to them.

The donations I received from this post went to urgent car repairs (to the exhaust system), and helped me pay for the natural foods co-op orders, as they need to be paid in advance, and things bought in bulk.

Now I need help to pay for car insurance.

Some of my friends at the homemade bird feeders.

My dad used to help with all the car related expenses. The 1st payment for the annual insurance is due in just over a week. ODSP still hasn’t reimbursed me for the dental fees, or the months they didn’t pay shelter costs, or a utility bill they were supposed to be paying (which has now gone to a collection agency in my name), and they are still deducting money from my cheque for supposed overpayments. For a system that is supposed to be a support, they have made it seem like they don’t care what happens to the people who depend on them. Even with help, months later, none of the problems with them have been resolved.

Without the car insurance, I can’t drive, and if I can’t drive, I can’t get water. Without water…

I have been kept company here by chickadees, squirrels, blue-jays, wild turkeys, redpolls, crows, and a little screech owl. It has been very peaceful, and is contributing to my healing.

To a more positive note, thanks to my home-made bird feeders, I have been kept company here by chickadees, squirrels, blue-jays, wild turkeys, redpolls, crows, and a little screech owl. It has been very peaceful, and is contributing to my healing.

Now my heart also goes out to all the people in New Zealand and Japan, as well as elsewhere in the world, where so many are suffering.

~~~

Linda blogs at Life with Multiple Chemical Sensitivity: A search for safe housing.