A victim of my own environment
Posted on Nov 12, 2009 by Susie Collins in Blog, Linda Sepp, MCS, Media/Videos
The story of my life was published today, it would have been nice if they got it right.
Post by Linda Sepp.
The Star reports on my housing situation:
To read the article, click on photo to enlarge.
And here is my Letter to the Editor in response:
I’m really disappointed by these articles.
The reporter had all the information, including letters from doctors about my situation and medical need for “safe” housing, which does not exist and should be provided by the health care system for people who are severely chemically injured as a primary part of our required health care.
And how the landlord has placed impossible to overcome obstacles into his seemingly generous offer, and that I owe the rent money because the landlord moved my mother out from the downstairs unit with an offer she couldn’t refuse, while knowing that I could not afford it here alone.
And how the province is refusing to provide the type of assistance one would expect from a social safety net, that I almost froze to death here as a result, that I have no safe warm clothing to wear because I cannot afford chemical free safe clothing, which is another prescription from my doctors, or wash it here without whole house water filtration.
Also, that Martin Pall’s paper about Multiple Chemical Sensitivities / Environmental Sensitivities being caused by toxic chemicals, and the info about it in the Toxicology text with all kinds of peer reviewed documentation debunking the industry line about MCS/ES being a psychological condition.
The articles also completely minimized my symptoms, which are completely disabling, and neglected to mention the Human Rights Commission’s recognition of the disability.
Other relevant links are below:
A victim of her own environment.
A poisoned home life: Woman with environmental sensitives struggles to find safety.
The Canadian Human Rights Commission Policy on MCS/ES.
The Medical Perspective on Environmental Sensitivities by: Margaret E. Sears (M.Eng., Ph.D.).
Toxic chemicals found in common scented laundry products, air fresheners.
Dr. Steinemann’s research: “Fragranced consumer products and undisclosed ingredients.”
When Neighbours Smoke: Exposure to Drifting Second-hand Smoke in Multi-unit Dwellings.
NOTE: fragrance chemicals and other VOC’s migrate in exactly the same ways.
Pollution & air quality – Indoor air quality – Scents.
Health Care Without Harm and Cleaners, Pesticides, and Fragrances: Global Overview.
General and Applied Toxicology, 3rd Edition, Chapter 92: “Multiple Chemical Sensitivity: Toxicological Questions and Mechanisms,” by Martin L. Pall:
Breakthrough study on Multiple Chemical Sensitivity shows MCS is an epidemic caused by toxic chemicals; peer-reviewed paper is published in prestigious toxicology reference work.
A major paper on Multiple Chemical Sensitivity by Professor Martin L. Pall (at left) is to be published Oct. 23 as chapter 92 in a prestigious reference work for professional toxicologists, General and Applied Toxicology, 3rd Edition (2009, John Wiley & Sons). Multiple Chemical Sensitivity (MCS) is also known as chemical sensitivity, chemical intolerance, and toxicant-induced loss of tolerance, with this last name emphasizing the role of chemicals in initiating cases of this disease. Pall’s paper, entitled “Multiple Chemical Sensitivity: Toxicological Questions and Mechanisms,” establishes five important facts about MCS:
1. MCS is a stunningly common disease, even more common than diabetes. This has been shown in a series of nine epidemiological studies from the United States and one study each from Canada, Germany, Sweden and Denmark. In the U.S., approximately 3.5% of the population is affected by severe MCS, with much larger numbers, at least 12% of the population, being moderately affected. MCS is, therefore, a very large international disease epidemic with major implications in terms of public health.
2. MCS is caused by toxic chemical exposure. Cases of MCS are initiated by exposure to seven classes of chemicals. These include three classes of pesticides and the very large class of organic solvents and related compounds. In addition, published studies implicate mercury, hydrogen sulfide and carbon monoxide as initiators. All seven of these classes of chemicals have been shown in animal studies to produce a common response in the body, excessive activity of a receptor in the body known as the NMDA receptor. Furthermore animal studies have demonstrated that chemicals belonging to each of these seven classes can have their toxic responses greatly lowered by using drugs that lower this NMDA response. Because excessive NMDA activity is implicated in MCS from other studies, we now have a compelling common response that explains how such diverse chemicals can produce the disease that we call MCS.
3. The role of chemicals acting as toxicants in MCS has been confirmed by genetic studies. Four such studies have shown that genes that determine the rate of metabolism of chemicals otherwise implicated in MCS, influence susceptibility to becoming ill with MCS. These four studies have been published by three research groups in three countries, the U.S., Canada and Germany, have collectively implicated six genes in determining susceptibility to MCS. Each of these six genes has a role in determining the rate of metabolism of MCS-related chemicals. The German studies by Schnakenberg and colleagues are particularly convincing on this because of the extremely high level of statistical significance of their studies implicating four of these six genes. There is only one interpretation for the role of these six genes in determining susceptiblity to MCS. It is that chemicals act as toxicants in initiating cases of MCS and that metabolizing these chemicals into forms that are either less or more active in such initiation, influences therefore, the probability that a person will become ill with MCS. It is clear, therefore, that MCS is a toxicological phenomenon, with cases being caused by the toxic response to chemical exposure.
4. We have, a detailed and generally well supported mechanism for MCS. This mechanism explains both the high level chemical sensitivity that is the most characteristic symptom of MCS, as well as many other symptoms and signs of this disease, can be generated. This mechanism is centered on a biochemical vicious cycle, known as the NO/ONOO- cycle, which interacts with other mechanisms previously implicated in MCS, notably neural sensitization and neurogenic inflammation. These act locally, in various tissues of the body, to generate local sensitivity in regions of the brain and in peripheral tissues including lungs, upper respiratory tract and regions of the skin and the GI tract. Because of this local nature, different MCS patients differ from one another in their sensitivity symptoms, because the tissues impacted differ from one patient to another. In addition to the evidence discussed above, this general mechanism is supported by various physiological changes found in MCS and in related illnesses, by studies of MCS animal models, by objectively measurable responses of MCS patients to low level chemical exposure and by therapeutic responses reported for MCS and related illnesses.
5. For over 20 years, some have falsely argued that MCS is a psychogenic disease, being generated in their view by some ill defined psychological mechanism. However this view is completely incompatible with all of the evidence discussed earlier in this release. While such incompatibility is more than sufficient reason to reject these psychogenic claims, the MCS toxicology paper lists eight additional serious flaws in the psychogenic arguments. There is a long history of false psychogenic claims in medicine, where such diseases as asthma, autism, Parkinson’s disease, ulcers, multiple sclerosis, lupus, interstitial cystitis, migraine and ulcerative colitis have been claimed to be generated by a psychological mechanism. The 2005 Nobel prize in physiology and medicine was give to Drs. Robin Warren and Barry Marshall for showing that ulcers are caused by a bacterial infection, and are not of psychogenic origin. It is clear, now, that MCS is physiological disease initiated by toxic chemical exposure that has been falsely claimed to be psychogenic.
Martin L. Pall is Professor Emeritus of Biochemistry and Basic Medical Science at Washington State University.
He is located on Pacific time in the U.S. and can be contacted at: 503-232-3883 and at martin_pall@wsu.edu. His web site is: thetenthparadigm.org.
Linda Sepp
If you enjoyed this post, please read these related stories:
- Published research shows Multiple Chemical Sensitivity caused by toxic chemical exposure Biochemist Martin Pall's breakthrough study on Multiple Chemical Sensitivity shows MCS is an epidemic caused...
- Cases of Multiple Chemical Sensitivity in the news Denver Post: If formal recognition ever comes for Multiple Chemical Sensitivity, the national economic implications...
- Interview with Eva Caballé about her new book on Multiple Chemical Sensitivity It's an honor to announce that a member of our Canary Report community has written...
- Documentary film: Allergic to the 21st Century Documentary on Electromagnetic Sensitivity and Multiple Chemical Sensitivity made for United Kingdom's Channel-4....
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Mokihana
13. Nov, 2009
Linda,
I’m conserving the energy I do have, and visits to the blogrolls are a limited use activity. What I read here and what I see you do to create a body of work that speaks out is such “big stuff.” My blood needs no more boil’n I can assure you.You send me hope and support at such critical times … I return the vibe and appreciate you for the life you live against all odds.
Care and aloha your way,
Mokihana
Lou Cheese
14. Nov, 2009
I’m very sorry for your trouble and I hope you’ll find yourself in a better situation soon.
Didn’t Ottawa build an apartment building just for people with MCS? I read about something like that and a Canadian non-toxic home research project while looking at tiny homes a couple of months ago. I’m going back to see if I can find them again.
I wonder if the original tiny home entrepreneur Jay Shaffer has any plans to create a MCS-specific version of a house…his website mentioned the dream of having a tiny home community. I think living in our own community is the only way we are going to be truly safe and comfortable.
linda
14. Nov, 2009
Thanks Mokihana and Lou.
The Ottawa safe housing project is in limbo, and was not safe enough for me anyway. I cannot share hallways and elevators with even moderately MCS people who use even the so called natural laundry products and soaps, or those who work or shop in places where fragrance chemicals are used. They aren’t going to allow pets there anyway, and my cats are my only non-toxic company, much needed if I am to be imprisoned at home and completely dependent on others to provide for me.
Connie Rae
14. Nov, 2009
linda, thanks for posting. I am trying to blog, but am scattered. It is courageous of you to do this. Many times the papers twist what is real to support their advertisers. I am not saying that is what was done here, but duh! The paper that did my story had conviction about the problems, but the advertising around the article was all on mental health for ‘balance’.
A national magazine sent a reporter and photographer, but decided against the story when they realized that the company that hurt me was one of their biggest advertisers. It’s all about health and safety, right. Well, from one allowable risk to another, I wish you well…fresh air, settled nerves and good food. Sigh.
amy
15. Nov, 2009
I am so sorry to hear about the mess you are in. Being misunderstood is one of the hardest parts of this illness. How I dream of a safe place for all of us to live. On the ocean. Spread out individual houses. An organic farm for our food. Sure would be nice!
Peace and Love,
Amy
linda
16. Nov, 2009
Just to clear up some inaccuracies from the article:
“I purchased a property (for her) in Lindsay last year,” said Carlton Properties chief financial officer Perry Fryers. “The house was empty for six months, totally cleaned out.
“She went in and said the (previous tenants) must have used plug-in air fresheners and there was no way she could live there.”
I was told there was a conditional offer on the place until I could see it.
Not that they purchased it.
The “expert” that they hired to check it out for (who had not finished his training, or worked with anyone disabled by MCS) me wrote a report saying that it was “free of chemical cleaning agents or artificial scents,” although, among other things; “There was a slight, unobtrusive and inoffensive smell of unknown origin discernible in most rooms of the home”, and “Although there should be no need for a tenant to regularly come to the basement, some walls were wet at their base and some dark and light staining was observed on some floor joists”. (that means mould)
Despite the concerns these and other statements in his report raised, as well as the fact that he had not received any answers to the questionnaire I helped him develop regarding chemical history, he assured me it was a great place, so my father drove me the 1 1/2 hours there to check it out.
From 5 minutes in that house, I was unable to sit up in the car on the way home, I had, in addition to cognitive difficulties, chest pains and heart palpitations, balance and co-ordination issues for over 3 weeks after those few minutes, and became more sensitized to other exposures, which included the cardboard boxes most of my things have been packed in since early 2006.
I was supposed to trust that same inexperienced person who said the place was chemical free and great for me, who had not been trained to detect chemicals with his nose, and used no equipment to test for any, and then thought mould in the basement was ok, to oversee and make a few cosmetic changes in the house and expect it would be safe for me to actually live in.
Because that green green “expert” had convinced my landlords that he was capable of doing the job, and was so positive about the place being suitable for me to them, they were very upset with ME for turning it down. Even if it was not MY fault that an inexperienced person they hired had made the mistakes.
I have not received any apologies from any of them for the harm that visit caused my health. After that, they also lost interest in trying to be helpful.
Their “generous” offer to buy a house does not include a real expert to make any changes necessary to make it safe for someone with severe MCS.
It only included the services of someone who was able to BS them about his qualifications and abilities, and they chose to believe that guy, instead of me.
My health is such that I am completely housebound and dependent on others. No-one I know who wants to help has the financial means to do what it will take to find a safe enough place for me. Those who do have the means must believe some of us are expendable, because so far they haven’t done any of the things they could do to help me live instead of die.
Lou Cheese
20. Nov, 2009
Linda,
I found a group that does pro bono work for those with chronic illness, they might be able to assist you. An article describing what they have done for other people is at:
http://www.thedailypage.com/isthmus/article.php?article=27291&sid=5ffed326430436a11e165b1b93286b98
Their website is:
http://www.patientpartnerships.org/
I hope things are getting better for you!
linda
21. Nov, 2009
Thanks Lou. This looks like a great resource for people living in the States (I’m in Canada).
Lani
06. Feb, 2010
Dear Linda,
I wish I could give you a safe place to live! I’m strugglling, too–have had to move sooooo many times when a place was no longer working (i.e, smoker moved in downstairs, grass nearby got chemically treated, heating/cooling vents had mold, etc.!). Don’t know what to do except just “keep going.” As I get older, that gets more difficult…the only “permanet solution” seems to be to live in the present moment, and think outside the box.
Hang in there. The publicity from your situation is helping others, if that’s any comfort. I support you and send my love. Please keep us all posted, OK?
Lani
linda
06. Feb, 2010
Thank you so much Lani.
I hope we can all find safe places to live so we’re not under constant threat from noxious substances.
So far there are no real changes to my situation but hopefully that will change. I will try to keep people posted through the blog that Susie has helped put together for me http://lindasepp.wordpress.com/