Sick and shunned: When everyday smells are an enemy, society should be an
ally

Barbara J. McKee

http://www.abqtrib.com/archives/opin...ns_mckee.shtml

A sweet flowery smell drifts over, and suddenly your eyes begin to water.
Your breath becomes short. Your lungs are tight. Your vision becomes blurry.

Is it your imagination? Or are you reacting to chemicals?

Recently I watched a film called "Safe," made in 1995, starring Julianne
Moore. The film was a glimpse into the world of people who can't handle the
pollutants and pesticides the rest of us ingest without a thought.

The horror/mystery movie featured people carrying around oxygen tanks,
showing how terrifying allergies can be to people who don't know what food
or hair products could cause a complete shutdown of their breathing.

In reality, environmental illnesses are just as mysterious and horrifying.
To get a bloody nose or swelling of the throat a few seconds after smelling
a new perfume is terrifying.

I have several friends who cannot tolerate any form of makeup, scented hair
products, perfume or many household cleaners. Cigarette smoke causes them to
have an immediate negative reaction. They have learned to avoid going out to
the movies, a nice restaurant or just about any social event - places that
might bring on an adverse reaction threatening their lives.

For them, outside activities require much planning or not going at all. They
can become prisoners in their homes - the only safe places they can live.

It's difficult to explain repeatedly to friends and strangers why they can't
go to the mall or out to the park. The looks of bewilderment turn into
nervous tension and eventually isolation from society.

Environmental illnesses have come to the forefront of disability issues
during the last 10 years. What was once thought to be a disease of the mind
is now recognized as the body rejecting the enormous amounts of chemicals
that invade our lives on a daily basis. The human immune system has been
through a mine field since the dawn of the Industrial Age.

When chemical illnesses hit the news, the media portrayed people that
suffered from them as kooks. People were ostracized for their intolerance to
plastics, automobile exhaust, perfumes, soaps and common household cleaning
products. Many were told by medical officials that there wasn't anything
wrong, and they were quietly shoved into the psychiatric community.
Sufferers of environmental illness were given anti-depressants instead of
allergy tests.

Environmental illnesses have significant repercussions, such as chronic
fatigue syndrome, fibromyalgia and irritable bowel syndrome. Such
debilitating illnesses have no cure, just treatments to attempt to keep them
in check.

People who suffer from environmental illnesses are asking to be included in
the Americans with Disabilities Act. But environmental illness research is
in its infancy. I hope that in the near future more-solid definitions can be
agreed upon and that this distressing class of illnesses is accepted for
what it is - a physical illness triggered by a person's environment.

For more information about environmental illnesses, visit the Web

at: www.ei-resource.org.

McKee, a wheelchair user, is a disability activist, poet, performer and
producer. You can contact her at .

In article >, Kathy > wrote:

> People who suffer from environmental illnesses are asking to be included in
> the Americans with Disabilities Act.

Want to bet there's at least one person that claims to be allergic to every spice?

I look forward with breathless anticipation to the destruction of the US
restaurant industry.

Mike Beede

"Mike Beede" > wrote in message
...
> In article >, Kathy
> wrote:
>
> > People who suffer from environmental illnesses are asking to be included
in
> > the Americans with Disabilities Act.
>
> Want to bet there's at least one person that claims to be allergic to
every spice?
>
> I look forward with breathless anticipation to the destruction of the US
> restaurant industry.

A woman where my husband works claims to be allergic to fish and fish
odours. Her reactions are apparently so bad that I can't cook fish at home
if he's going to work the next day.

Gabby

Regul Toxicol Pharmacol 1996 Aug;24(1 Pt 2):S96-110
Clinical consequences of the EI/MCS "diagnosis": two paths.
Staudenmayer H.
Allergy Respiratory Institute of Colorado, Denver, USA.

There are two distinct paths down which patients
"diagnosed" with environmental illness/multiple
chemical sensitivities (EI/MCS) can travel. Along
the first path, beliefs about low-level, multiple
chemical sensitivities as the cause of physical
and psychological symptoms are instilled and
reinforced by a host of factors including toxicogenic
speculation, iatrogenic influence mediated by
unsubstantiated diagnostic and treatment practices,
patient support/advocacy networks, and
social contagion. Intrapsychic factors also reinforce
this path through the motivational mechanism
of factitious malingering, or unconscious
primary and secondary gain, mediated through
psychological defenses, particularly projection
of cause of illness onto the physical environment.
The second path involves restructuring distorted
beliefs about chemical sensitivities. Explanations
of the placebo effect, the physiology of the stress
response, and the symptoms of anxiety and
panic facilitate the direction of EI/MCS patients
onto this path. A decision model is presented to
discriminate among toxicogenic and psychogenic
explanations of the EI/MCS phenomenon,
based on appraisal of reaction and physiologic
and cognitive responses during provocation
chamber challenges under double-blind, placebo-
controlled conditions. These studies have been
helpful therapeutically for some patients in selecting
the path that leads to wellness. This paper
suggests how various therapeutic techniques
can be employed with difficult patients. Often,
supportive psychotherapy establishes a therapeutic
alliance which facilitates cognitive therapy to
restructure distorted beliefs. In the process of
finding alternative explanations to chemical
sensitivities, the etiology of symptoms is related
to stressful life events, including childhood
experiences which may have disrupted normal
personality development and coping capacity.
Furthermore, biological and physiological sequelae
stemming from early, chronic trauma have
been identified which could explain many of
the multisystem complaints. The incidence of
childhood abuse reported by EI/MCS patients
is strikingly high, and it is recollection of trauma
that many EI/MCS patients avoid by displacing
the psychologic and physiologic adults sequelae
onto the physical environment. The reenactment
of these experiences may be necessary in the
therapy of some affected individuals. Despite
the significant therapeutic effort expanded, some
patients who are imprisoned by a closed belief
system about the harmful effects of chemical
sensitivities are resigned to travel down the path
which ultimately leads to despair and depression,
social isolation, and even death.

----------------------------

Psychol Med 2002 Nov;32(8):1387-94
Psychiatric and somatic disorders and multiple
chemical sensitivity (MCS) in 264 'environmental
patients'.
Bornschein S, Hausteiner C, Zilker T, Forstl H.
Psychiatric Clinic and Department of Toxicology,
I, Medical Clinic, Technical University of
Munich, Germany.

BACKGROUND: An increasing number of
individuals with diverse health complaints are
currently seeking help in the field of environmental
medicine. Multiple chemical sensitivity (MCS)
or idiopathic environmental intolerances (IEI)
is defined as an acquired disorder with multiple
recurrent symptoms associated with environmental
chemicals in low concentrations that are well
tolerated by the majority of people. Their symptoms
are not explained by any known psychiatric
or somatic disorder.

METHOD: Within a 2-year period we
examined 264 of 267 consecutive
patients prospectively presenting to a university
based out-patient department for environmental
medicine. Patients underwent routine medical
examination, toxicological analysis and the
structured clinical interview for DSM-IV
psychiatric disorders (SCID).

RESULTS: Seventy-five per cent of the patients
met DSM-IV criteria for at least one psychiatric
disorder and 35% of all patients suffered from
somatoform disorders. Other frequent diagnoses
were affective and anxiety disorders, and
dependence or substance abuse. In 39%
a psychiatric disorder, in 23% a somatic
condition and in 19% a combination of the two
were considered to provide sufficient
explanation of the symptoms. Toxic chemicals
were regarded as the most probable cause in only
five cases. The suspected diagnosis of MCS/IEI
could not be sustained in the vast majority of cases.

CONCLUSION: This investigation confirms
previous findings that psychiatric morbidity is
high in patients presenting to specialized centres
for environmental medicine. Somatoform
disorders are the leading diagnostic category,
and there is reason to believe that certain
'environmental' or MCS patients form a special
subgroup of somatoform disorders. In most
cases, symptoms can be explained by well-defined
psychiatric and medical conditions other than
MCS, which need specific treatment. Further
studies should focus on provocation testing in order
to find positive criteria for MCS and on therapeutic
approaches that consider psychiatric aspects.

---------------------------------------------

Ann Allergy 1993 Dec;71(6):538-46
Adult sequelae of childhood abuse presenting as environmental illness.
Staudenmayer H, Selner ME, Selner JC.
Allergy Respiratory Institute of Colorado, Denver 80222.

Sixty-three patients with polysomatic complaints
attributed to sensitivity to environmental
chemicals had detailed clinical assessments and
diagnostic psychologic evaluations. Objective
medical parameters failed to substantiate their
beliefs that multiple chemicals were the cause of
their problems. A group of 64 patients with chronic
medical conditions and defined psychologic
disorders not attributed to chemical exposure
served as controls. Approximately half the patients
in each group underwent long-term psychotherapy,
and in these patients, the prevalence of
physical and sexual childhood abuse was significantly
higher (P < .05) among the cohort of
women who attributed their symptoms to environmental
or chemically related illness. These data
suggest that somatization may reflect sequelae of
childhood abuse and may play an important role
in the illness experienced by women who believe
they are sensitive to environmental chemicals.

Regul Toxicol Pharmacol 1996 Aug;24(1 Pt 2):S96-110
Clinical consequences of the EI/MCS "diagnosis": two paths.
Staudenmayer H.
Allergy Respiratory Institute of Colorado, Denver, USA.

There are two distinct paths down which patients
"diagnosed" with environmental illness/multiple
chemical sensitivities (EI/MCS) can travel. Along
the first path, beliefs about low-level, multiple
chemical sensitivities as the cause of physical
and psychological symptoms are instilled and
reinforced by a host of factors including toxicogenic
speculation, iatrogenic influence mediated by
unsubstantiated diagnostic and treatment practices,
patient support/advocacy networks, and
social contagion. Intrapsychic factors also reinforce
this path through the motivational mechanism
of factitious malingering, or unconscious
primary and secondary gain, mediated through
psychological defenses, particularly projection
of cause of illness onto the physical environment.
The second path involves restructuring distorted
beliefs about chemical sensitivities. Explanations
of the placebo effect, the physiology of the stress
response, and the symptoms of anxiety and
panic facilitate the direction of EI/MCS patients
onto this path. A decision model is presented to
discriminate among toxicogenic and psychogenic
explanations of the EI/MCS phenomenon,
based on appraisal of reaction and physiologic
and cognitive responses during provocation
chamber challenges under double-blind, placebo-
controlled conditions. These studies have been
helpful therapeutically for some patients in selecting
the path that leads to wellness. This paper
suggests how various therapeutic techniques
can be employed with difficult patients. Often,
supportive psychotherapy establishes a therapeutic
alliance which facilitates cognitive therapy to
restructure distorted beliefs. In the process of
finding alternative explanations to chemical
sensitivities, the etiology of symptoms is related
to stressful life events, including childhood
experiences which may have disrupted normal
personality development and coping capacity.
Furthermore, biological and physiological sequelae
stemming from early, chronic trauma have
been identified which could explain many of
the multisystem complaints. The incidence of
childhood abuse reported by EI/MCS patients
is strikingly high, and it is recollection of trauma
that many EI/MCS patients avoid by displacing
the psychologic and physiologic adults sequelae
onto the physical environment. The reenactment
of these experiences may be necessary in the
therapy of some affected individuals. Despite
the significant therapeutic effort expanded, some
patients who are imprisoned by a closed belief
system about the harmful effects of chemical
sensitivities are resigned to travel down the path
which ultimately leads to despair and depression,
social isolation, and even death.

----------------------------

Psychol Med 2002 Nov;32(8):1387-94
Psychiatric and somatic disorders and multiple
chemical sensitivity (MCS) in 264 'environmental
patients'.
Bornschein S, Hausteiner C, Zilker T, Forstl H.
Psychiatric Clinic and Department of Toxicology,
I, Medical Clinic, Technical University of
Munich, Germany.

BACKGROUND: An increasing number of
individuals with diverse health complaints are
currently seeking help in the field of environmental
medicine. Multiple chemical sensitivity (MCS)
or idiopathic environmental intolerances (IEI)
is defined as an acquired disorder with multiple
recurrent symptoms associated with environmental
chemicals in low concentrations that are well
tolerated by the majority of people. Their symptoms
are not explained by any known psychiatric
or somatic disorder.

METHOD: Within a 2-year period we
examined 264 of 267 consecutive
patients prospectively presenting to a university
based out-patient department for environmental
medicine. Patients underwent routine medical
examination, toxicological analysis and the
structured clinical interview for DSM-IV
psychiatric disorders (SCID).

RESULTS: Seventy-five per cent of the patients
met DSM-IV criteria for at least one psychiatric
disorder and 35% of all patients suffered from
somatoform disorders. Other frequent diagnoses
were affective and anxiety disorders, and
dependence or substance abuse. In 39%
a psychiatric disorder, in 23% a somatic
condition and in 19% a combination of the two
were considered to provide sufficient
explanation of the symptoms. Toxic chemicals
were regarded as the most probable cause in only
five cases. The suspected diagnosis of MCS/IEI
could not be sustained in the vast majority of cases.

CONCLUSION: This investigation confirms
previous findings that psychiatric morbidity is
high in patients presenting to specialized centres
for environmental medicine. Somatoform
disorders are the leading diagnostic category,
and there is reason to believe that certain
'environmental' or MCS patients form a special
subgroup of somatoform disorders. In most
cases, symptoms can be explained by well-defined
psychiatric and medical conditions other than
MCS, which need specific treatment. Further
studies should focus on provocation testing in order
to find positive criteria for MCS and on therapeutic
approaches that consider psychiatric aspects.

---------------------------------------------

Ann Allergy 1993 Dec;71(6):538-46
Adult sequelae of childhood abuse presenting as environmental illness.
Staudenmayer H, Selner ME, Selner JC.
Allergy Respiratory Institute of Colorado, Denver 80222.

Sixty-three patients with polysomatic complaints
attributed to sensitivity to environmental
chemicals had detailed clinical assessments and
diagnostic psychologic evaluations. Objective
medical parameters failed to substantiate their
beliefs that multiple chemicals were the cause of
their problems. A group of 64 patients with chronic
medical conditions and defined psychologic
disorders not attributed to chemical exposure
served as controls. Approximately half the patients
in each group underwent long-term psychotherapy,
and in these patients, the prevalence of
physical and sexual childhood abuse was significantly
higher (P < .05) among the cohort of
women who attributed their symptoms to environmental
or chemically related illness. These data
suggest that somatization may reflect sequelae of
childhood abuse and may play an important role
in the illness experienced by women who believe
they are sensitive to environmental chemicals.

In article >, Mark Thorson > wrote:

> Regul Toxicol Pharmacol 1996 Aug;24(1 Pt 2):S96-110
> Clinical consequences of the EI/MCS "diagnosis": two paths.
> Staudenmayer H.
> Allergy Respiratory Institute of Colorado, Denver, USA.

So to summarize, people with environmental allergic claims tend to
be nuts? I wanted to say something like that, but lacked any
factual basis. I'll have to save this post....

Mike Beede

In article >, Mark Thorson > wrote:

> Regul Toxicol Pharmacol 1996 Aug;24(1 Pt 2):S96-110
> Clinical consequences of the EI/MCS "diagnosis": two paths.
> Staudenmayer H.
> Allergy Respiratory Institute of Colorado, Denver, USA.

So to summarize, people with environmental allergic claims tend to
be nuts? I wanted to say something like that, but lacked any
factual basis. I'll have to save this post....

Mike Beede

In rec.food.cooking, Mike Beede > wrote:

> So to summarize, people with environmental allergic claims tend to
> be nuts?

Naw, some people really ARE allergic to nuts. Froot Loops is more like
it.

--
....I'm an air-conditioned gypsy...

- The Who

In rec.food.cooking, Mike Beede > wrote:

> So to summarize, people with environmental allergic claims tend to
> be nuts?

Naw, some people really ARE allergic to nuts. Froot Loops is more like
it.

--
....I'm an air-conditioned gypsy...

- The Who

Gabby saw Sally selling seashells by the seashore and told us all
about it on Fri, 12 Mar 2004 22:29:29 -0400:

>
>"Mike Beede" > wrote in message
...
>> In article >, Kathy
> wrote:
>>
>> > People who suffer from environmental illnesses are asking to be included
>in
>> > the Americans with Disabilities Act.
>>
>> Want to bet there's at least one person that claims to be allergic to
>every spice?
>>
>> I look forward with breathless anticipation to the destruction of the US
>> restaurant industry.
>
>A woman where my husband works claims to be allergic to fish and fish
>odours. Her reactions are apparently so bad that I can't cook fish at home
>if he's going to work the next day.

My fiance is deathly allergic to fish and shellfish... eating an Asian
pork dish with a few drops of fish sauce in it made him seriously ill
for 24 hours, and exposure to actual fish earns him an emergency trip
to the ER, but that doesn't stop him from feeding them to his cats! (I
do worry about him being accidentally exposed and I wish he
wouldn't...)

~Karen AKA Kajikit
Lover of shiny things...

Made as of 11 March 2004 - 41 cards, 23 SB pages (plus 2 small giftbooks), 42 decos, 10FBs

Visit my webpage: http://www.kajikitscorner.com
Allergyfree Eating Recipe Swap: http://groups.yahoo.com/group/Allergyfree_Eating
Ample Aussies Mailing List: http://groups.yahoo.com/group/ampleaussies/

Gabby saw Sally selling seashells by the seashore and told us all
about it on Fri, 12 Mar 2004 22:29:29 -0400:

>
>"Mike Beede" > wrote in message
...
>> In article >, Kathy
> wrote:
>>
>> > People who suffer from environmental illnesses are asking to be included
>in
>> > the Americans with Disabilities Act.
>>
>> Want to bet there's at least one person that claims to be allergic to
>every spice?
>>
>> I look forward with breathless anticipation to the destruction of the US
>> restaurant industry.
>
>A woman where my husband works claims to be allergic to fish and fish
>odours. Her reactions are apparently so bad that I can't cook fish at home
>if he's going to work the next day.

My fiance is deathly allergic to fish and shellfish... eating an Asian
pork dish with a few drops of fish sauce in it made him seriously ill
for 24 hours, and exposure to actual fish earns him an emergency trip
to the ER, but that doesn't stop him from feeding them to his cats! (I
do worry about him being accidentally exposed and I wish he
wouldn't...)

~Karen AKA Kajikit
Lover of shiny things...

Made as of 11 March 2004 - 41 cards, 23 SB pages (plus 2 small giftbooks), 42 decos, 10FBs

Visit my webpage: http://www.kajikitscorner.com
Allergyfree Eating Recipe Swap: http://groups.yahoo.com/group/Allergyfree_Eating
Ample Aussies Mailing List: http://groups.yahoo.com/group/ampleaussies/

Gabby wrote:
> "Mike Beede" > wrote in message
> ...
>
>>In article >, Kathy
>
> > wrote:
>
>>>People who suffer from environmental illnesses are asking to be included
>
> in
>
>>>the Americans with Disabilities Act.
>>
>>Want to bet there's at least one person that claims to be allergic to
>
> every spice?
>
>>I look forward with breathless anticipation to the destruction of the US
>>restaurant industry.
>
>
> A woman where my husband works claims to be allergic to fish and fish
> odours. Her reactions are apparently so bad that I can't cook fish at home
> if he's going to work the next day.
>
> Gabby
>


Of course you can; it's your house. If you choose not to cook fish because
you are a nice person that's your business. But don't let a hysterical
women where your husband works bully you and interfere with your household
(except if she is invited to dinner, which I suspect is not likely to ever
happen.)

-Bob

Gabby wrote:
> "Mike Beede" > wrote in message
> ...
>
>>In article >, Kathy
>
> > wrote:
>
>>>People who suffer from environmental illnesses are asking to be included
>
> in
>
>>>the Americans with Disabilities Act.
>>
>>Want to bet there's at least one person that claims to be allergic to
>
> every spice?
>
>>I look forward with breathless anticipation to the destruction of the US
>>restaurant industry.
>
>
> A woman where my husband works claims to be allergic to fish and fish
> odours. Her reactions are apparently so bad that I can't cook fish at home
> if he's going to work the next day.
>
> Gabby
>


Of course you can; it's your house. If you choose not to cook fish because
you are a nice person that's your business. But don't let a hysterical
women where your husband works bully you and interfere with your household
(except if she is invited to dinner, which I suspect is not likely to ever
happen.)

-Bob

"Dog3" <dognospam@adjfkdla;not> wrote in message
4...
>
> The future hubster sounds like fun. I have an aunt that is the same way.
> Even the canned tuna in water makes her sick. She said when she was
> younger she would eat lobster in defiance of the allergy. When the ER
> visits turned into overnight stays she stopped
>

Reminds me of my mother. We thought she was allergic to shellfish because
she went into anaphylactic shock from eating a crab once (despite having
eaten them all her life). After that, she would still eat shellfish--mostly
shrimp but sometimes other types--and would sometimes break into hives but
sometimes not. A few months ago she had a bad reaction to peanuts so her
doctor sent her to an allergy specialist. Turns out she's allergic to
peanuts, lettuce, potatoes and tomatoes (and probably the other nightshades,
too), soy, corn, mushrooms, and I can't remember what else. She still eats
all of those things and still breaks out into hives (turns out she's not
allergic to shellfish, though, but is probably allergic to sulfites) *and*
doesn't have an epi-pen or keep chlor-tripolon around. It drives me nuts!

rona

--
***For e-mail, replace .com with .ca Sorry for the inconvenience!***

"Dog3" <dognospam@adjfkdla;not> wrote in message
4...
>
> The future hubster sounds like fun. I have an aunt that is the same way.
> Even the canned tuna in water makes her sick. She said when she was
> younger she would eat lobster in defiance of the allergy. When the ER
> visits turned into overnight stays she stopped
>

Reminds me of my mother. We thought she was allergic to shellfish because
she went into anaphylactic shock from eating a crab once (despite having
eaten them all her life). After that, she would still eat shellfish--mostly
shrimp but sometimes other types--and would sometimes break into hives but
sometimes not. A few months ago she had a bad reaction to peanuts so her
doctor sent her to an allergy specialist. Turns out she's allergic to
peanuts, lettuce, potatoes and tomatoes (and probably the other nightshades,
too), soy, corn, mushrooms, and I can't remember what else. She still eats
all of those things and still breaks out into hives (turns out she's not
allergic to shellfish, though, but is probably allergic to sulfites) *and*
doesn't have an epi-pen or keep chlor-tripolon around. It drives me nuts!

rona

--
***For e-mail, replace .com with .ca Sorry for the inconvenience!***