Follow us!

    Post: my knowledge of MCS

    Posted by Pat on 1/20/03

    The following is the knowledge of MCS I have gained, and is
    an extract from a letter I wrote to a High school in the DC.

    MCS Definition:

    "1. MCS is acquired in relation to some documentable
    environmental exposure that may initially have produced a
    demonstrable toxic effect.

    2. Symptoms involve more than one organ system, and recur
    and abate in response to predictable environmental stimuli.

    3. Symptoms are elicited by exposures to chemicals that are
    demonstrable but very low.

    4. No widely available test of organ system function can
    explain symptoms."

    Definition from Mark Cullen, MD, " Multiple chemical
    sensitivities: development of public policy in the face of
    scientific uncertainty," New Solutions, 1991; Fall: 16-24)

    A study by Nethercott (partly funded by US NIOSH and US
    NIEHS) reached a similar definition:

    1. "The symptoms are reproducible with [repeated chemical]

    2. "The condition is chronic."

    3. "Low levels of exposure [lower than previously or
    commonly tolerated] result in manifestations of the syndrome."

    4. "The symptoms improve or resolve when the incitants are

    5. "Responses occur to multiple chemically unrelated

    6. [Added in 1999]: Symptoms involve multiple organ systems.

    See "Multiple Chemical Sensitivity: A 1999 Consensus":
    and "Chemical
    Poisoning, Abraham Lincoln, and Flashdarks" by Bonnye
    Matthews at

    I will write what I believe to be a better definition in the
    scientific summary.

    "The latest research strongly suggests that chemical
    sensitivity is most probably some combination of central
    nervous system damage and enzyme deficiencies that can also
    cause problems with the endocrine and immune systems." --
    Cynthia Wilson.

    First I discuss the CNS damage, then the enzyme disorders. I
    believe that in most cases, enzyme disorders cause MCS and
    that the frequent brain damage is a result of such.

    1. Central evoked responses:

    Donald Dudley, M.D., studied twenty patients with MCS (under
    Cullen's definition) and discusses his research in the book
    Defining Multiple Chemical Sensitivity (1998). Auditory and
    visual P300 were influenced "significantly" when the
    olfactory system was stimulated with chemicals that had six
    or fewer carbon fragments.

    Left and right P300 auditory were greatly decreased upon
    chemical exposure. Though the visual P300 was not decreased
    to the same degree (but decreased none the less), there was
    a significant change in waveform quality that caused two
    patients to have occipital seizures. The olfactory system
    sends signals to every part of the brain and uses excitatory
    amino acids in neuro-transmission.

    In other words, the brain waves of MCS sufferers go haywire
    immediately upon being exposed to chemicals they are
    sensitive to. This is hardly the work of "psychological"
    disorders (see Defining Multiple Chemical Sensitivity by
    Bonnye E. Matthews, pg. 24, summary of "MCS: Trial by Science").

    2. SPECT Brain Scans:

    A tool used by Nuclear Medicine Specialists is the SPECT
    brain scan. SPECT stands for Single Photon Emission
    Computerized Tomography.

    Rather than show brain structure like or MRI scans, SPECT
    scans show functioning of the brain. "Perfusion impairment"
    means there is a decrease in the flow of blood to the brain.

    Contrary to what the interagency report states, SPECT scans
    are very accurate and valid research tools. In 1996 the
    Society of Nuclear Medicine Brain Imaging Council stated,
    "S.P.E.C.T. and P.E.T. can clearly be used to delineate
    functional abnormalities of the brain regardless of the
    cause" (Ethical clinical practice of functional brain
    imaging, Society of Nuclear Medicine Brain Imaging Council,
    J Nucl Med 1996, 37, 1256-9).

    A response to this is often "[SPECT scans] show nothing but
    the consequences of MCS, not the causes."

    But, what if scientists were to scan the MCS patients, then
    expose them to perfume, and scan them again. Well, that has
    already been done, hundreds of times! And the results are

    With this in mind, allow me to discuss research by Dr.
    Gunnar Heuser, M.D., Ph.D., FACP discussed Bonnye Matthews'
    book. Dr. Heuser has done before and after S.P.E.C.T. brain
    scans in many MCS patients. The patients were scanned after
    chemical avoidance, and were then scanned again after being
    exposed to perfume. His research findings are as follows:
    MCS patients have a decreased flow of blood to the brain,
    which becomes further decreased upon exposure to perfumes
    (see Defining Multiple Chemical Sensitivity pgs. 27-30 and a
    response to the Interagency report by Ann McCampbell, M.D.)

    Although this does not show the CAUSE of MCS, it does show
    that there is an actual reaction to chemicals on a physical

    3. PET Brain Scans:

    PET scans were used to discover the roll of a specific gene
    in Alzheimer's Disease. PET scans are very accurate at
    showing brain function and metabolism. PET stands for

    Function abnormalities on PET scans show up as holes in the
    brain that one medical scientist refers to as ?function holes?.

    3A. Dr. Gerald H. Ross (M.D., C.C.F.P., D.I.B.E.M.,
    D.A.B.E.M., F.A.A.E.M., F.R.S.M., Past President of the
    American Academy of Environmental Medicine), in a
    documentary, discusses before and after PET brain scans: MCS
    patients were scanned in a clean environment and then
    scanned after being exposed to a substance that by history
    they report being sensitive to, "in an amount that's an
    everyday experience ('s not as if they're sniffing
    glue)." MCS patients have abnormal brain cell functioning.
    After the patients were exposed to a substance they were
    sensitive to, there was a "profound" deterioration in brain
    cell function. The area in which this function deterioration
    is present correlates with the brain-related symptoms
    reported by the MCS sufferers (see MCS documentary Multiple
    Chemical Sensitivity: How Chemical Exposures May Be
    Affecting Your Health, directed by Allison Johnson).

    3B. Dr. Gunnar Heuser, M.D., Ph.D., FAC.P has also performed
    before and after PET scans. According to his studies, PET
    scans reveal that the brain stem, hypothalamic, and limbic
    areas of the brain are harmed by chemical exposures. In
    regards to radioactive glucose uptake, these areas of brain
    become hypermetabolic upon chemical exposure to a degree
    that resembles "focal seizure activity".

    Dr. Heuser writes, "Since the limbic system contributes
    emotional reactions and interpretations to sensory input,
    and since patients with amygdaloid (the amygdala is part of
    the limbic system) seizures can develop panic and related
    attacks during an amygdaloid seizure, our data appear to
    explain the emotional instability during a reaction to

    The previously mentioned structures also serve memory and
    cognitive as well as neuroendocrine and autonomic nervous
    system functions, all of which can be deranged in a patient
    with MCS."

    The limbic area of the brain is where the nervous,
    endocrine, and immune systems interact. Thus, a person with
    MCS may or may not have an abnormal immune system (though
    many MCS patients do; however, this is the RESULT of MCS,
    not the cause).

    See "The Role of the Brain and Mast Cells in MCS" by Gunnar
    Heuser, M.D., Ph.D., FACP:; and ?PET
    Scanning - Alzheimer's Disease? at; and

    4. Mechanism[s] of MCS:

    4A. ?In 1963, research conducted by Eloise Kailin, MD,
    strongly suggested that MCS was a metabolic (enzyme
    deficiency) disorder. Dr. Kailin's findings were rejected by
    both clinical ecologists and MCS adversaries because both
    sides maintained that to exist at all, MCS had to be immune
    system mediated. Follow-up research on metabolic problems in
    MCS sufferers was not conducted for 31 years." -- Cynthia Wilson

    Human biochemistry is affected by toxic chemicals at any
    level of exposure. A healthy body uses P450 enzymes for
    metabolizing chemicals, drugs, steroid hormones, fatty
    acids, and for synthesizing prostaglandins. However, this
    defense mechanism is inadequate in the elderly, people with
    bad nutritional levels, and anyone who is physiologically

    For these susceptible people, exposure to certain chemicals
    leads to enzyme abnormalities, called Porphyrinopathy, which
    is an "umbrella" term that refers to any porphyrin
    metabolism disorder/ abnormality.

    If the body is unable to properly use P450 enzymes then it
    becomes very sensitive to porphyrinogenic chemicals. There
    are 3,750 everyday chemicals and substances that are known
    to be porphyrinogenic, including fragrances (95% of perfumes
    are derived from petroleum and many contain benzene). People
    with acquired Porphyrinopathy are very sensitive to
    fragrances, paints, solvents, etc.

    Sounds a lot like "MCS", does it not? Even more interesting
    is the fact that 90% of Dr. Meggs' MCS patients tested
    positive for acquired-Porphyrinopathy and 70% of the Mayo
    Clinic?s MCS patients tested positive.

    These findings alone are very significant. However, live
    blood cell analyst Hart Brent says that "The problem with
    testing is that between symptomatic attacks (exposures)
    levels of heme precursors excretion are lower and can even
    normalize with time."

    In Brent's view, "The mystery illnesses of the 20th century,
    such as Gulf War Syndrome and MCS (multiple chemical
    sensitivity), have their basis in a biochemical glitch-lost
    ability to construct a porphyrin ring, an 8-enzyme process."
    Brent then explains that "Porphyrins are a group of
    nitrogen-containing organic compounds forming the foundation
    structure for respiratory pigments in animals (hemoglobin)
    and plants (chlorophyll) and enzymes."

    During a Porphyria attack "the body is unable to assemble
    prophyrin rings or heme, so the individual develops
    deficiencies of hemoglobin, cytochromes and enzymes? that
    require a porphyrin ring. As should be evident, this is a
    very complex, whole body syndrome. A porphyria attack is
    usually transient (unless genetic in origin) and can involve
    multiple, unrelated organs and/or systems anywhere in the
    body" says Brent, who later writes, "Symptoms are caused not
    by high or toxic levels of chemicals but by the metabolic
    effects triggered by the exposure even to low levels of
    chemicals. The body thinks it needs more porphyrin rings in
    order to construct cytochrome P450 enzymes to breakdown the
    incoming chemicals, pushing porphyrin synthesis into
    overdrive and raising levels of ALA, from the first
    committed enzyme step."

    During an attack, aminolevulinic acid (ALA), the first
    precursor in the porphyrin enzyme chain, is taken up to the
    brain where it interacts with inhaled chemicals, triggering
    of neurotransmitter disruption, excitatory amino acid
    release, delay of P300 wave, and neurogenic inflammation
    [Meggs did a study on neurogenic inflammation in MCS:
    Hypothesis for induction and propagation of chemical
    sensitivity based on biopsy studies. Environ Health Perspect
    105(Suppl 2):473-478 (1997)]. All can lead to cell
    damage/death and learning disorders. (If this occurs on a
    daily basis, then it will obviously cause major damage.)
    This is probably why perfusion impairment is seen in SPECT
    scans of MCS patients: ALA-chemical interacting causes
    damage to the cells, which are thus unable to call upon more
    blood. This also explains why detox often improves brain
    function, because if there are no chemicals for the ALA to
    interact with, then there will be no triggering of further
    or continuous brain damage.

    "No one's brain can learn under these three compounded
    stressors; lost is the ability to concentrate, retain or
    sort information", writes Brent.

    This disease also effects the Oxygen Transport System which
    depends on hemoglobin (from heme, which is formed of
    porphyrin rings and iron) to transport oxygen from the lungs
    to other organs.

    4B. There is another form of disease that can cause
    hypersensitivity to chemicals: Mastocytosis and related Mast
    Cell disorders.

    Mastocytosis is a disease in which the sufferer has too many
    mast cells in his or her body. Mast cells are "connective
    tissue" cells that release powerful chemicals, such as
    histamine, into the blood and tissues. This causes an
    immediate irritation that leads to swelling, itching,
    cell-fluid leaking, and can often also cause closed airways
    (characterized by tightening of the lungs and throat),
    muscle spasms, and loss of voice. The disease also often
    leads to cramping in the intestines, ulcer-like symptoms,
    low blood pressure, and poor nutrient absorption from foods.
    This explains why many MCS patients have a blood pressure
    higher than average (from porphyrinopathy), whilst some have
    blood pressure LOWER than average (Mastocytosis).

    Chemicals, including fragrances, can trigger mast cell
    "attacks" in Mastocytosis.

    See "Enzymatic Influences Causation of Brain Cell Damage" by
    Dr Brian E. Goble Ph.D., physiological toxicologist: ;
    "Testing for Toxic Metal- and Chemical-Induced
    Porphyrinuria" by Carl P. Verdon, Ph.D., Terry A. Pollock,
    M.S., and J. Alexander Bralley, Ph.D., C.C.N.; "Porphyria -
    How Modern Chemicals Trigger the Vampire Disease" by Hart
    Brent:; and
    "The Role of the Brain and Mast Cells in MCS" by Gunnar
    Heuser, M.D., Ph.D., FACP:

    For a discussion of other mechanisms go to

    Summary of Scientific Data:

    Whether a result of MCS[S] or an association with it, there
    is consistent damage in MCS patients in an area of the brain
    responsible for memory, mood, concentration, and so forth.
    Dr. Mark Donohoe, MB BS writes, ?The degree of disability
    suffered by those suffering is very high, and there is
    currently no clear evidence as to whether the damage to the
    nervous system is permanent or temporary. My personal
    impression, based on my clinical experience with over 500
    sufferers in the past nine years, is that recovery is rare,
    and that the condition is associated with permanent
    neurotoxicity, or brain damage, in adults.?

    MCS[S] appears to generally be a syndrome induced by
    poisoning, which can effect every organ and / or system in
    the body, depending on the type of poisoning and level of
    exposure. The poisoning usually causes the victim to develop
    abnormalities with porphyrin metabolism that lead to extreme
    sensitivity to certain substances. Dr. Gunnar Heuser
    believes that chemical poisoning/ injury can also induce
    Mast Cell disorders, which in turn can also lead to extreme
    chemical sensitivity.

    Bonnye wrote, "It is an utter waste of taxpayer funds,
    employee or volunteer time, and resources to keep complexing
    (i.e., MCS diagnosis out of MCS symptoms). It?s time to drop
    the MCS or EI or 20th century disease or whatever else one
    chooses to use and get back to basics. We are dealing with
    poisoning plain and simple. When we do, there is nothing
    left to talk about--everything falls into place."

    We have millions upon millions of dollars being used up on
    studies of cancer, AIDS, etc., and then BILLIONS of dollars
    being absolutely wasted by the Government on pointless NASA
    studies, INSTEAD of contributing to MCS research. This is
    making the U.S. lose its title as "the greatest nation on
    earth" in my view. Canada has long been supporting MCS.

    But, How Could There Be So Much Doubt in the Medical Community?


    A 1999 MCS Consensus agreed with the 1994 MCS consensus by
    the U.S. Environmental Protection Agency, U.S. Consumer
    Product Safety Commission, American Lung Association, and
    American Medical Association, which stated that "[MCS]
    complaints should not be dismissed as psychogenic, and a
    thorough workup is essential".

    MCS is accepted as a physical disease by "4 Canadian Federal
    Agencies"; "6 Canadian Provincial Agencies"; "8 Federal
    Court Decisions"; "13 Local Government Agencies,
    Commissions, Councils & Departments"; "14 State Workers'
    Comp. Board Decisions"; "20 State Court Decisions"; "22
    Federal Government Agencies, Commissions, Institutes &
    Departments"; and "23 State Government Agencies,
    Commissions, Legislatures & Departments" (Donnay).

    To my knowledge, the AAEM, EPA, Department of Housing and
    Urban Development, Social Security Administration and the
    Americans with Disability Act [of July 26, 1990] accept MCS
    as a physical disease. Most of the top scientific
    researchers on this issue accept the condition as having a
    physical basis.

    Dr. Gerald H. Ross [M.D., C.C.F.P., D.I.B.E.M., D.A.B.E.M.,
    F.A.A.E.M., F.R.S.M. Past President of the American Academy
    of Environmental Medicine, May 2000] describes the growing
    body of evidence for MCS's physical causation in his May
    2000 essay "Response to Errors Prevalent in the
    Understanding of Environmental Illness" at

    Ross was invited to a meeting on MCS by the American
    Chemical Society. There he presented his research on MCS
    patients and brain damage. He noted that about 75% of all
    the speakers there presented data that supported a physical
    origin of MCS, while the other 25% presented, for the most
    part, opinions that MCS is psychological.

    From 1952 to 1997 there were 425 published articles on MCS
    (Excluding articles in the Journal of Clinical Ecology),
    most in peer-reviewed medical journals. Of these, 59 discuss
    both perspectives, 25 are research protocols, 104 support
    the psychogenic view, and 231 of the papers present data
    supporting a physical origin of MCS. More than 50% of these
    articles were published from 1992-1997, while almost all of
    the psychogenic papers were written before 1993. Almost ALL
    of the articles published since 1997 present data supporting
    MCS?s physical causation.

    "It amazes me that in spite of all these publications on
    MCS, that some people continue to loudly proclaim that is a
    non-existent illness" writes Ross, who later writes that
    people who say there is a "lack of evidence" in regards to
    MCS's physical causation "are completely at odds with the
    weight of evidence and opinion in the published medical and
    scientific literature."


    Ashford and Miller argue that "those who continue to promote
    untested and untestable psychogenic theories for MCS are
    part of the problem. Their lobbying of policymakers and
    others in this regard has contributed to widespread
    governmental inertia on this issue, making it near
    impossible to obtain funding for essential studies
    specifically directed toward MCS. Many of those who advocate
    psychological explanations in government-sponsored meetings
    and in scientific literature are paid corporate
    spokespersons or consultants with financial conflicts of
    interest..." ("Chemical Exposures: Low Levels and High
    Stakes", 1998, second addition) They blame mainly Gots for
    the widespread doubt among Doctors.

    "some of these most vocal critics of MCS are paid
    consultants or even apologists for the chemical industry.?
    They seem uninterested in the true scientific facts, and in
    the weight of opinion in the medical research community
    about the reality and likely physical basis for
    environmental illness or chemical sensitivity", writes Ross.

    Bonnye E. Matthews, in her book Defining Multiple Chemical
    Sensitivity, discusses the issue in the chapter "Examination
    of Seven Papers". There are seven major studies that are
    used to show MCS is a psychological condition. In these
    seven studies, there were a total of 334 patients studied.
    However, no more than thirty-three of these patients
    actually had MCS. In five of the studies, none of the
    patients had MCS. Of the remaining two, in one study,
    eighteen out of forty-one had MCS, and in the other study no
    more than fifteen out of fifty-three had MCS. Thus, it is
    fair to state that the studies have nothing to do with the
    real MCS, since the disease was not studied.

    Since no consistent laboratory abnormalities were found,
    these studies have been used to say that there are no
    consistent laboratory abnormalities found in MCS patients,
    despite the fact that these seven studies did not involve
    MCS patients. In addition, even if the studies were about
    MCS patients, they'd be flawed, since all of them assume
    that the presence of psychological symptoms shows
    psychological origins, which is a flawed research approach.
    Due to these seven studies, policies were made denying
    accommodations to people with MCS, anti-MCS essays were
    written, and millions of MCS sufferers have been left in the
    dark to suffer with their disease without the medical
    support they deserve!

    I am trying to keep this letter as brief as possible, but if
    you would like me to list the seven studies and go into
    detail on them, please do not hesitate to ask me.

    In addition, even IF the studies were about MCS patients
    they?d be flawed since all of them assume the presence of
    psychological SYMPTOMS equals psychological ORIGIN, which is
    a flawed research approach.

    There are no studies that give water-weight evidence that
    MCS is psychological, yet the chemical industry has done a
    great job in convincing the U.S. public otherwise. For more
    on that, read Ann McCampbell?s detailed essay, "MULTIPLE

    In addition there are many poorly researched essays by
    generally UN-biased authors online and in medical journals
    contributing to the confusion. For example, in an essay
    titled "Babies, Breasts, and MCS", Todd Seavey writes, " ...
    an earlier psychological experiment found that people
    claiming to have MCS will react in substantially the same
    way (coughing, sweating, etc.) whether sprayed with man-made
    chemicals or with what they merely believe to be chemicals."

    However, Albert Donnay already responded to that
    misconception, saying, "The masking odors used by these
    researchers... included oil of almond and oil of lemon. Oil
    of almond contains benzaldehyde, which has neurotoxic
    properties similar to formaldehyde, and oil of lemon is an
    irritant. Their use to cover up the smells of both the
    problem and fake chemicals completely invalidates the results."

    Albert Donnay also commented on MCS "skeptic" Dr. Gots,
    saying, "Dr. Gots is a pharmacologist with no formal
    training or certification in toxicology...Dr. Gots has not
    treated or seen patients of his own for twenty years and has
    never been the treating physician for a chemically sensitive
    patient. He practiced medicine for only a few years before
    becoming a fulltime consultant and expert witness for the
    chemical industry and other corporations, for whom he has
    often testified against MCS patients. For more information
    about Dr. Gots and the four industry-supported organizations
    that he directs, contact MCS Referral and Resources."

    Seavey also wrote, "People claiming to suffer from "multiple
    chemical sensitivity" - believed by many to be severe
    hypochondriacs with a general aversion to the modern world -
    have been found to have a much higher than average tendency
    toward anxiety, according to a study in the October issue of
    the Journal of Occupational and Environmental Medicine, as
    reported by Reuters Health"

    There is a high rate of depression and anxiety in patients
    with cancer, MS and other known physical diseases. The
    frequent presence of these psychological symptoms in MCS
    patients is absolutely meaningless. As I already illustrated
    in this letter, the psychological symptoms in MCS patients
    is usually due to three factors: (1) Stress from having
    their lives ruined by the physical symptoms, (2) failure of
    many Doctors to acknowledge and properly treat the disease,
    and (3) actual damage to an area of the brain responsible mood.

    In conclusion, the confusion surrounding MCS is due to
    political factors, not scientific ones. The idea that MCS is
    psychological is now an embarrassment to the medical community.

    Hope this was some help,

    ~ Pat

    Posts on this thread, including this one

  Site Map:  Home Chatboards Legal Jobs Classified Ads Search Contacts Advertise
  © 1996 - 2013. All Rights Reserved. Please review our Terms of Use, Mission Statement, and Privacy Policy.
The Counsel.Net ChatBoardsm. All Rights Reserved.