The MCS skeptics questions and answers

 

 

People who are skeptic that MCS is a real disease often point to what they see as inconsistencies and other problems. Here we explain what the real story is with those seemingly contradictory observations.

 

Keywords: MCS, multiple chemical sensitivity, skeptic, FAQ, questions, social media

 

When I visited last week, everything was fine. This week she says my clothes smell. They are the same clothes!

 

This actually happens a lot. If the clothes were washed in between, they could have been contaminated by the washing machine or clothes dryer (especially if using a shared machine). It also matters a great deal where those clothes have been. They pick up fumes like a sponge and then slowly release them again. Hardware stores, grocery stores and public restrooms are notorious for stinking up clothes, which the people who wear them cannot smell themselves.

 

He says he gets sick from printed materials, but then he has a colorful calendar hanging on his wall.

 

This was a comment to a video program about people with MCS. When printed materials are exposed to air, the fumes become less over time. This is called offgassing. People offgas things they do not tolerate before taking them into their homes.

 

In this particular case, each page of the calendar was exposed to air for a week. It took three months to make the whole calendar inert. But the journalist never asked about it.

 

They just seem nutty.

 

To them living the chemical lifestyle seems nutty. Why do people want to smell of harsh chemicals and douse themselves with carcinogens every morning? And then all day breathe in dozens of chemicals that have never been tested for any health effects? Just because most people do it doesnt make it sane.

 

MCS can impose major lifestyle changes that often seem strange to outsiders. What is nutty is very much in the eye of the beholder.

 

She has a whole cabinet full of pills with nutritional supplements. That looks ridiculous.

 

When the regular doctors fail to help, people turn to alternative medicine. Its a jungle with a lot of options to try and very little good guidance. It is mostly trial and error to see what may help. Maybe you have to take this herb for some months before it helps? It is really easy to gather a large collection, and it can be hard to let go of the hope some might work.

 

This is not particular to MCS. In the early days of the AIDS epidemic it was the same way, which is shown in the film Dallas Buyers Club, and the book How to survive a plague. Other examples are tuberculosis and cancer.

 

I took a shower and put on fresh clothes washed in baking soda, but it still wasnt good enough.

 

If you live the toxic lifestyle, you cant become nontoxic overnight. Showering and fresh clothes helps, but you are still gonna perspire toxic chemicals for weeks or months after you stopped using them. Your body has stored those chemicals for years. Some of the toxic laundry products cannot be washed out of the clothes, especially not dryer sheets (fabric softeners).

 

I have MCS and I dont have all those problems these people have. They are just wimps.

 

The vast majority of people with MCS have the milder versions of the illness. They are able to work and have a social life, if they just lessen their use of toxic products.

 

According to one Danish and one American survey, the really severe cases are only about 3 percent of the overall MCS population.

 

He uses a plastic gas mask, I thought plastic offgassed.

 

A new plastic mask is indeed toxic. Some people cope by offgassing their masks for a long time before actually using them.

 

She says she lives in isolation, but here she is, out in public.

 

The forced isolation is a big problem. Sometimes people with MCS just wanna play normal for a day and take the consequences. It is really no different from grandma who gathers her strength to attend an important family gathering.

 

The Covid-19 pandemic should have made this more understandable.

 

They have two suicides a year in Snowflake.

 

This myth was created by an article in The Guardian. The reality is that there have been three suicides in the Snowflake MCS community since it started in 1988. Two of them happened the year before the journalist came to visit. Other media then copied the myth.

 

We are not absolutely sure why the three died, but we know that two of them were housebound for years and depended on hired help. We also know that both of them had run out of savings and could no longer pay for the help they needed. Arizona does not help pay for home help. Medicare pays for some forms of assisted living, but they do not accommodate people with MCS.

 

Scientists have done studies where these people could not tell the difference between fresh air and chemical fumes.

 

There have been several studies where people with MCS didnt know whether they were exposed to a chemical or not. A big problem with most of these studies is that the chemical has a smell, which can give it away. To make it impossible to smell the difference, they add a fragrance to both the chemical fume and the clean air. But now the clean air isnt clean any longer. Any kind of fragrance can be a problem for people with MCS, including essential oils.

 

There are many other problems with these types of challenge tests. They are nearly impossible to do correctly.

 

They are all

 

About 70% are women. There is no other common trait. Many other diseases are dominated by women such as nearly all autoimmune diseases. Men dominate other diseases, such as Lou Gehrigs (ALS) and autism.

 

There have been several theories of an MCS profile, but they have all been debunked by actual science. MCS can hit people in all parts of the world, all races, all levels of education and wealth, and whether they have prior mental illness or not.

 

Why do these people not go see a psychiatrist?

 

MCS is not a psychiatric disease, but many have actually tried various psychiatric treatments. They may try that early on, as their regular doctor and family members talk them into trying it.

 

There are multiple surveys and studies of whether psychiatry helped, and mostly it didnt help at all. Many even reported that the medications were harmful to them drugs are chemicals too.

 

Some try psychologic treatments to help with the trauma of living with MCS. That is no different from coping with the trauma of other life-altering diseases.

 

She lives in a car, and that is not toxic?

 

Cars are not wonderful, but are sometimes the least-terrible option for someone who cannot find or afford a healthy house. The cars are usually many years old, so a lot of the toxics are aired out. There have been a few car models that were less toxic, such as from Lexus and Volvo.

 

Doctors dont even believe it is real!

 

Some do, some dont. Many are not sure. The medical community is divided. One reason is a turf war, another is that MCS contradicts current dogma. There is a lot we still dont know about MCS. In the past doctors also said many other illnesses were all in their head, such as ulcers, migraines, celiac, lead poisoning, endometriosis, Lyme and tempomandibular jaw (TMJ). Many still say that about fibromyalgia and chronic fatigue.

 

In the 1980s and 1990s there were lively disagreements among scientists whether second-hand smoking was harmful or not. It was vital to the tobacco industry to keep that topic controversial, just as it is for some to keep MCS controversial.

 

Afterword

The comments listed here are good and reasonable observations considering what little information people had. Life with MCS is difficult to understand for outsiders, and there is very little accurate information available.

 

Popular media is a common source. That is made by a journalist who knows hardly anything about MCS and has to make the story or video interesting so peoples eyeballs dont wander away.

 

Popular media makes things interesting by focusing on controversies and anything that seems unusual. They need to keep peoples attention so they can display more advertising. Otherwise they go bankrupt.

 

It is just 3% of the overall MCS population that are the really severe cases. They are the ones who have to make major lifestyle changes. How often does the media talk about the other 97%? Just about never.

 

Then clever editing does the rest. Popular media is for entertainment, not educating people about anything.

 

People also make judgements based on their own life experiences and what they hear from their peers. If you do not have MCS it is really hard to understand what it means to have it. That is not unusual. A young and healthy person has no way to really understand what old age is like. A healthy person cannot grasp what it means to be disabled.

 

A lot of us think we understand these things, until we actually land in that situation.

 

About this article

We found most of these skeptical voices on social media. They are edited versions of real postings. To keep it simple we provided short answers without referencing more detailed information.

 

More information

For more information about MCS, what life with this illness is like, about the controversies and references to scientific journals, please go to www.eiwellspring.org/intromenu.html

 

 

2022