MCS

Communicating With Others When You Are Chemically Sensitive

Yesterday, I was a featured guest on a conference call hosted by MCS Friends, an online and phone support group for people with chemical sensitivities.  This call was one of a series of discussions on how to communicate with others when you are chemically sensitive, including suggestions for how to explain chemical sensitivities to friends, family members, doctors, etc. We also discussed health and medical issues of interest to those with MCS.

The hour and a half discussion was recorded and the replay is available to MCS Friends members.

To become a member, go to www.mcsfriends.org and follow instructions there, or you can call 248-301-2283 to join by phone.

 

Susan Molloy’s Presentation to Access Board 5/23/18

Susan Molloy’s Presentation to U.S. Access Board at Phoenix Meeting on 5/23/18

U.S. Access Board

1331 “F” Street NW

Washington, DC 20004

Dear President Robertson, Board Members, and Executive Director Mr. Capozzi:

First of all, we are honored by your visit to ABILITY360, our Phoenix Disability Empowerment Center. Thank you, and ABILITY360 Executive Director Phil Pangrazzio, for all your efforts organizing this meeting and for hearing our presentations. Please extend our appreciation to your staff members as well for their hard work.

We trust that you are as encouraged as we, by which I mean people facing environmental barriers to public spaces and facilities, by the Indoor Environmental Quality (“IEQ”) Report of 2005. It was published by the National Institute of Building Sciences, sponsored by the U.S. Access Board, and coordinated by the Access Board’s then Chief Counsel Jim Raggio.

Through this project, we developed concepts and language through which to make the Access Board’s work more comprehensive.

While implementation of the measures we suggest in that document, and in subsequent communications, may not all be immediately achievable, it is our responsibility to see that inadvertent barriers to our access do not go unnoticed and that we assist the Board in drawing up applicable specifications and policies in accordance with the IEQ Final Report.

We are at your service to make this happen.

Toward that end, I endorse the presentations of Mary Lamielle, Director of the National Center for Environmental Strategies, of Ann McCampbell, M.D., from whom you have just heard, from Libby Kelley regarding electrical hypersensitivities and related issues, and from our other colleagues who have participated in preparation for this meeting.

Now, I would like to familiarize you with a few bare-bones features that can enormously and immediately improve our access to public places, with little or no expense, while more extensive measures are developed for future implementation.

SHORTLIST of Free, Readily Achievable Structural and Design Considerations

Windows that open (consider air-to-air heat exchanger technology)

Daylight, skylights, and the option of incandescent lightbulbs (no fluorescents or LEDS) in at least some specified areas of the facility

Landscaping using plants, trees, ground covers that require no chemical maintenance, and no extensive watering (to minimize mold growth)

Non-chemical IPM inside facility, paths of travel, and outdoors (sidewalks, parking area, bus stop)

No Fragrance Emission Devices (“FEDS”) in at least designated restrooms, and no fragrance distribution systems in Heating, Ventilation, Air Conditioning (“HVAC”) systems

No smart meters for electricity, gas, or water installed in public areas of a facility unless thoroughly and effectively shielded

Separate electrical wiring and/or fiber optics, and kill switches, for at least some areas of the facility so that non-essential computers, printers, fluorescents, others can be shut down without impacting other areas of the facility

No carpet in designated areas

Maintain existing landline phones, and re-install the old ones

Independent variable fresh air ventilation system (aka “fan”), for at least certain areas of the facility, that can be operated by the room occupant without assistance

Signage on and around the facility, in pertinent formats, indicating where accessible (for our purposes) sidewalks, ramps, doors, restrooms, phones, conference rooms, parking are located, along with a posted, readily available schedule of recent maintenance and materials

Signage, in pertinent formats, to designate areas where wi-fi is present, to prevent inadvertent exposure to the degree possible

Designation of areas for re-charging wheelchair batteries, cell phones, computers, vehicles, others using wired electrical outlets

Essential: buzzer or intercom outside the facility to summon building occupants such as the clerk, doctor, child, police, social services employee, grocer, shopkeeper

Study the “Cleaner Air Room” concept and language as per the Indoor Environmental Quality (“IEQ”) Report, pages 47-55, 2005, which is posted on the Access Board’s website (www.access-board.gov/research/completed-research/indoor-environmental-quality)

 

Susan Molloy, M.A.

Hansa Trail, Snowflake, AZ 85937

928.536.4625

molloy@frontiernet.net

My Presentation to Federal Access Board 5/23/18

On May 23, 2018, the federal Access Board held a town hall meeting in Phoenix to hear from members of the public about their access needs.  I was honored to be on a panel, along with Susan Molloy, to make a presentation on the access needs of people with multiple chemical sensitivities (MCS) and electromagnetic hypersensitivities (EHS).

Click here to listen to my presentation (7.5 mins).

Susan Molloy and I, as well as several other people with MCS and/or EHS who made public comments, stressed the profound lack of access that people with these disabilities have to housing, health care, employment, and almost the entire built environment.  We urged the Board to take action to increase this access.

For specific next steps, Susan and I endorsed the National Center for Environmental Health Strategies (NCEHS) recommendations for action shown below:

NCEHS RECOMMENDATIONS FOR ACTION
US Access Board, January 8, 2018
 
Unfinished business from the IEQ (Indoor Environmental Quality) Project
(www.access-board.gov/research/completed-research/indoor-environmental-quality):
 
Work with our community to develop a plan to address IEQ and the disability access needs of people with chemical and electrical sensitivities or intolerances.
 
Fulfill the promises of the ADA Accessibility Guidelines for Recreational Activities, September 3, 2002:
 
Develop an action plan that can be used to reduce the level of chemicals and electromagnetic fields in the built environment;
 
Develop technical assistance materials on best practices to accommodate individuals with chemical and electrical sensitivities or intolerances;
      
Address recommendations in the IEQ Report including the need for research on cleaning products and practices that are effective and protective of occupant health.
 
New Initiatives:
 
Create a partnership or working group with the National Council on Disability (NCD) and other agencies as appropriate to address our issues.
 
Appoint a liaison from our community to work with the partnership or working group.
 
Appoint at least one staff member and one board member as a contact on these issues.
 
Support the appointment of an individual with knowledge of these issues to the U.S. Access Board and/or the National Council on Disability (NCD).
 
Facilitate efforts to educate members of the U.S. Access Board and staff, the NCD, and other agencies and organizations, as the opportunity presents.
 
Invite knowledgeable experts and advocates to work with the U.S. Access Board and the National Council on Disability to advance these issues.
 
Convene a meeting with the experts to formalize a plan of action to address the proposed initiatives. This plan should in part include joint hearings or stakeholder meetings sponsored by the U.S. Access Board, the NCD, and other agencies as appropriate, to get input from the community. Invite those with environmental sensitivities or intolerances to “SPEAK for themselves” about their health, access, and disability needs. 
 
 
National Center for Environmental Health Strategies, Inc. (NCEHS), Mary Lamielle, Executive Director, 1100 Rural Avenue, Voorhees, New Jersey 08043 (856)429-5358; (856)816-8820
 
 
 

MCS Booklet Now Available as a Kindle E-Book!

I am happy to report that my Multiple Chemical Sensitivity (MCS) booklet is now available as a Kindle E-book. It can be purchased through Amazon. On that site you can “look inside” and preview the first 4 pages.  Feel free to leave me a customer review and tell me what you think of the booklet. 

My Interview with Lloyd Burrell is Airing Tomorrow 4/5/18

The interview I did with Lloyd Burrell of ElectricSense is being aired tomorrow, Thursday, 4/5/18. If you sign up for his newsletter, he will send you a link where you can hear the interview.  It will be available for replay for 24 hours. 

Listen to an excerpt from the interview>>

Podcast courtesy Lloyd Burrell. Learn more about Lloyd’s work at www.electricsense.com/

 

HOW TO OVERCOME CHEMICAL AND EMF SENSITIVITY

Posted by Lloyd Burrell on April 3, 2018 under Podcasts & Teleseminars

You don’t get it until you get it”, explains Ann.

It’s hard to understand multiple chemical sensitivity unless you’ve lived it.

Here’s Ann’s potted explanation: “multiple chemical sensitivity (MCS) is a medical condition where people have a heightened sensitivity to chemicals, many of which are found in everyday life like perfume and car exhaust and cigarette smoke, pesticide and things like that”.

Ann was the healthy, athletic child and young person. A gifted student too. She trained to be a medical doctor in internal medicine specializing in women’s health.

It was after she was out of medical school and training that Ann just started feeling more tired than usual. Then certain foods started to bother her. She changed her diet. And then over a two week period things took a turn for the worse. “I dramatically developed a very severe case of MCS over about two weeks”.

She’d been taking a supposedly hypoallergenic protein powder which, inexplicably, she had a violent reaction to.

It just felt like I’d stuck my finger in an electric socket”.

From then on it was as if Ann reacted to everything around her. She felt as though her nervous system was fried. She would pull out her pen, the same pen that last week she could write with and she was okay, she’d get a little whiff of the ink and start feeling dizzy, woozy, even nauseated.

It was very dramatic. Food was a big part of it. She could only eat a few foods. And the foods she could eat were just kind of going through her without really getting digested.

She also had a serious back problem, like a protruding disk in her lower back that no matter what she did, stayed inflamed. The pain was so great that for about 5 years she was forced to lie down most of the time.

She say’s, “some people, they get ill after they remodel their house or they move into a new house, or remodel the office. Or there was a significant pesticide exposure or crop duster or something like that. But I would say I’m kind of the scary story for everybody because there wasn’t anything obvious.”

Ann slowly started winding down and then had these dramatic drop-downs. The icing on the cake was when she went for an MRI scan. “When I had an MRI scan – and this is of interest for people with EMF issues – I got very ill after that.“ From that point on Ann couldn’t even breathe in fumes from certain foods without getting ill.

Today she still admits to being careful but thankfully her condition has radically improved.

INTERVIEW

Thursday, 5th April at 1:00 p.m. EST (10 AM PST or 6 PM GMT) I’m interviewing environmental illness consultant and leading MCS advocate Dr. Ann McCampbell.

Dr. Ann McCampbell overcome mcs and emf sensitivity is author of the booklet: Multiple Chemical Sensitivity.

Dr. McCampbell is a medical doctor who trained in internal medicine and worked in women’s health until she became severely ill with multiple chemical sensitivity (MCS) in 1989. She’s been a leading MCS advocate for over 25 years.

She’s co-chair of the Multiple Chemical Sensitivity’s Task Force, New Mexico and was a founding member of the Chemical Sensitivity Foundation. In 2005, Dr. McCampbell worked with other MCS advocates to help create an Indoor Environmental Quality report for the U.S. Access Board which included recommendations for increasing accessibility in public buildings for people with chemical and electromagnetic sensitivity.

The theme of my interview with Dr. McCampbell is how to overcome MCS and EMF sensitivity. Listen to my revealing interview with Dr. Ann McCampbell and learn:

• the link between MCS and EMF sensitivity – a recent study has found a common pathological mechanism for both sensitivities

• how Dr. Martin Palls work is relevant to MCS – and how this can be tweaked to get better results and be less of a burden on the body

• how Annie Hopper’s brain re-training protocol may be used to complement an environmental medicine approach

• the mechanisms that come into play in the body which create chemical hypersensitivity – and how this can be detected by blood tests

• who you should try and consult if you think you are MCS – most doctors have no training or experience with MCS

• Ann’s top 3 tips (borne out of 25 years of experience) for dealing with MCS

• hidden infections can be a root cause or contributor – Ann recommends 3 other types of analysis work that can help get to the bottom of MCS

• an inexpensive heat and light treatment that can be used to improve blood flow and circulation and increase oxygenation of the tissue so waste products are able to move away

• a little known rescue remedy – just 30 minutes a day can leave you feeling much better

• Ann’s top 4 tips for EMF protection – she discusses EMFs with almost everyone who consults with her

• why she believes EMFs are such a big issue – in the 25 years that she’s been dealing with these issues the chemical world has been quite stable

• the book she now recommends for MCS sufferers – it’s the book she wishes somebody had handed her when she got sick and there seemed to be no answers

I’ve chosen the teleseminar format so that you can follow via your computer or using your telephone. If you’re not sure what time it’s on where you live you can check your local time here https://www.worldtimebuddy.com/

The interview will last approximately one hour and it’s FREE to listen to. *****To access this interview make sure you are signed up to my newsletter.***** (If you received notification of this interview by email you don’t need to sign up again.) If you’re signed up to my newsletter I’ll send you an email on the day of the interview with a link to the interview. The replay is also FREE for 24 hours after the event for everyone that’s signed up to my newsletter.

www.electricsense.com/13766/overcome-chemical-emf-sensitivity/

Winnipeg Considering Ban on Perfume by City Workers

CTV News, Winnipeg, Canada

March 28, 2018

A new resolution could see City of Winnipeg workers soon barred from wearing perfumes and colognes. The resolution has been put before a city council committee for consideration, and would need to be adopted by council to be implemented. It says some scented products, such as perfumes, lotions and body sprays, can trigger sensitivities and aggravate asthma allergies in some people.

The hope is to create an overall workplace policy banning the use of scented products, in all City of Winnipeg workplaces. The committee meets next Wednesday. If passed, administration will report back in 3 months with a policy.

https://winnipeg.ctvnews.ca/committee-to-consider-banning-perfumes-colognes-in-city-workplaces-1.3863613#_gus&_gucid=&_gup=Facebook&_gsc=uRzeMcM

Increasing Prevalence of Multiple Chemical Sensitivities (MCS)

Here is more great work by my colleague Anne Steinemann, PhD. Important documentation that, as suspected, the prevalence of MCS is increasing significantly.

National Prevalence and Effects of Multiple Chemical Sensitivities
Steinemann, Anne PhD

Journal of Occupational and Environmental Medicine: March 2018 – Volume 60 – Issue 3 – p e152–e156

Objective: The aim of this study was to assess the prevalence of multiple chemical sensitivities (MCS), its co-occurrence with asthma and fragrance sensitivity, and effects from exposure to fragranced consumer products.

Methods: A nationally representative cross-sectional population-based sample of adult Americans (n = 1137) was surveyed in June 2016.

Results: Among the population, 12.8% report medically diagnosed MCS and 25.9% report chemical sensitivity. Of those with MCS, 86.2% experience health problems, such as migraine headaches, when exposed to fragranced consumer products; 71.0% are asthmatic; 70.3% cannot access places that use fragranced products such as air fresheners; and 60.7% lost workdays or a job in the past year due to fragranced products in the workplace.

Conclusion: Prevalence of diagnosed MCS has increased over 300%, and self-reported chemical sensitivity over 200%, in the past decade. Reducing exposure to fragranced products could help reduce adverse health and societal effects.

Full article available at https://journals.lww.com/joem/pages/results.aspx?txtkeywords=steinemann.

Calvin Klein’s Runway Highlights Multiple Chemical Sensitivity

A most surprising thing happened at New York Fashion Week show this year. The Calvin Klein designer used MCS protective clothing as one of his inspirations for his collection. Those of us with chemical sensitivities have always known we were ahead of our time in recognizing the chemical soup we increasingly are living in, but I have to admit I didn’t expect we would be recognized as fashion forward as well! And how ironic to have Calvin Klein be inspired by MCS while at the same time selling a lucrative line of perfumes and cologne which are the bane of our existence!

Calvin Klein’s runway highlights Multiple Chemical Sensitivity disorder.. What is it?

Julie Tong Yahoo Lifestyle, February 15, 2018

A controversial disease known as Multiple Chemical Sensitivity (MCS) has become an unlikely point of inspiration for Raf Simons, the creative mind behind Calvin Klein.

During his Tuesday New York Fashion Week show, Simons referenced the 1995 Todd Haynes film Safe, which stars Julianne Moore as Carol. The main character becomes a victim in her own home and the world around her. She is, in short, allergic to her own life, as she begins to develop mysterious symptoms — mystery bleeding, fatigue, and weight loss — all inexplicable to doctors. As Carol becomes increasingly curious about what is causing her pain, she suspects the environment and starts wearing long sleeves and a balaclava to stay protected.

This week, Simons used Carol’s protective “fashion choice” as one of several inspirations for his runway collection — which similarly includes a series of balaclavas (hand-knit), thick white and metallic gloves, thigh-high boots, and protective clothing similar to a firefighter’s bunker gear. Jackets and coats are made in a bright safety orange, include reflective paneling along the sleeves and trimming.. One look, featuring a white, green, and red striped sweater with blue sleeves, white trousers, and orange balaclava, bears a striking resemblance to the film’s own promotional imagery of Carol in her protective outfit.

According to Vogue U.K., “Raf defined his work as being a mix of ‘safety and protection’ with a lot of cinematic historical references. They included Safe, the Julianne Moore film of 1995 about environmental illness in California and a new age clinic in Mexico…” While Raf’s show notes chose to explain his creative references with a collection of 50 words, they included “safe,” “environment,” “industrial,” and “uniform.”

But what is MCS, anyway? The disease rose to prominence during the 1980s and was used to describe chemically intolerant patients — those who are unusually, severely sensitive to common chemicals, solvents, and pollutants that are typically not considered harmful to the general public. Examples include diesel exhaust, smoke, fragrances, cleaning products, and even new carpets and fresh ink.

It differs from traditional allergies in its “symptoms and mechanisms,” according to Ann McCampbell, MD, who suffers from the illness and describes it on the website of the nonprofit Chemical Sensitivity Foundation. She explains how the reactions can be as severe as creating an “imbalance in a person’s nervous, immune, and endocrine (hormonal) systems” and forcing sufferers to pare down their diets to just a few select foods. It is also possible to develop difficulty in speech or cognitive ability. Exposure from cell phones, computers, fluorescent lights, and other wireless devices are believed to affect those with MCS, with the triggers and its reactions varying widely.

To see the full article and view the runway photos, go to:

https://finance.yahoo.com/photos/calvin-kleins-runway-highlights-multiple-slideshow-wp-185836466/

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