Multiple Chemical Sensitivity ... or MUSES Syndrome ?

1
Multiple Chemical Sensitivity... or MUSES
Syndrome ?

Presented to the Environmental Law
CentresInternational MCS Conference 8 April
2002, Conway Hall, London(c) 2002 by Albert
Donnay, MHS MCS Referral Resources,
Incwww.mcsrr.orgadonnay_at_jhu.edu
2
What is Multiple Chemical Sensitivity?

• 1999 Consensus Definition (Arch Env Health
  199954147-9) 1 MCS is a chronic condition
  
• 2 marked by multiple symptoms in multiple
  organs
• 3 that recur reproducibly
• 4 in response to low levels of exposure
• 5 to multiple unrelated chemicals and
• 6 improve or resolve when incitants are
  removed.
• Best of 7 MCS Definitions at identifying MCS
  cases (McKeown-Eyssen et al, Arch Env Health
  200156406-12)

3
How Many MCS Symptoms Have Been Reported ? List
compiled by JHU Multi-Center Study of MCS
Immunology

• CARDIOVASCULAR 9
• DIGESTIVE 18
• EARS // HEARING 7
• EYES // VISION 12
• GENITO-URINARY 10
• HEAD 6
• MOUTH // TASTE 14
• MUSCULOSKEL. 14
• NECK 3

• NERVOUS SYSTEM 43
• NOSE // SMELL 10
• SYSTEMIC // OTHER 17
• VASCULAR 5
• REPRODUCTIVE 17
• RESPIRATORY 6
• SKIN // TOUCH 7
• THROAT 5
• TOTAL SYMPTOMS 203

4
What Objective Findings Are Reported in MCS ?

• Abnormal Blood Plasma
• Impaired Circulation
• Impaired Heart Function
• Impaired Detox Pathways
• Ear Hearing Abnormalities
• Endocrine Deficiencies
• Eye Vision Abnormalities
• Gastrointestinal Impairment
• Immune System Activation
• Increased Mast Cells
• Mineral Deficiencies

• Musculoskeletal Abnormalities
• Neurocognitive Deficiencies
• Nose Smell Abnormalitites
• Porphyrin Enzyme Abnorm.
• Respiratory Impairment
• Sensory Nerve Impairment
• Skin Tone Abnormalities
• Vestibular Impairment
• Vitamin Deficiencies
• Xenobiotics in Fat, Blood, Urine and
  HairRefs online at www.mcsrr.org

5
Who is Funding This MCS Research?

• Most MCS-related papers do not acknowledge any
  funding !
• But 10 US federal agencies fund over 25M per
  year ATSDR, CDC, DOD, DOE, DVA, EPA, NIDCD,
  NIEHS, NIH NIOSH
• US Dept of Defense also funds MCS studies of UK
  veterans
• State governments in California, Maryland,
  Missouri, New Jersey, New Mexico Washington
  have funded MCS studies
• Both patient support groups (eg. CIIN) and
  chemical industry front groups (eg. ESRI) have
  funded MCS conferences and pilot studies, which
  usually have a strong bias.

6
What View Predominates Physical or Psychiatric?

• OverlapsOnly 11 of First Authors and
  30 of Publishers have ever supported more than
  one view

7
On What Do All Agree? Prevalence is Very High !

• 5 US studies find 28 - 37 of adults say they
  are especially sensitive to common chemical
  exposures
• 4 US studies find 15 - 17 say theyre
  unusually sensitive
• 6.3 in CA and 1.9 in NM say they have been
  diagnosed by a medical professional with MCS or
  environmental illness
• US, Canadian and UK studies of Gulf War veterans
  all find an increased prevalence of (still
  undiagnosed) MCS with a relative risk of 2 to 4
  compared with undeployed era controls
• So whatever cause, must be very common moreso
  in war.

8
But is MCS Only a Disorder of Chemical
Sensitivity?

• Not just ODOURS LIGHT SOUND HYPERSENSITIVITY a
  re very strongly associated with MCS p lt 0.00001
  (Miller, Tox Ind Health, 199915370-85)
• When asked, MCS patients also report
  hypersensitivity to
• TASTES // FOODS
• TOUCH // PRESSURE // PAIN
• HOT or COLD WEATHER
• ELECTROMAGNETIC FIELDS
• HEAVY METALS
• MENTAL or PHYSICAL EFFORT STRESS OF ANY KIND

In an audience poll conducted at this point,
approx. 75 people reported having all these
sensory sensitivities since ill. Only one (an
American) reported having just chemical
sensitivity, aka pure MCS.
9
Might MCS Be Something Else as Critics Claim?

• Not New or Unique in English or French Medical
  Literature
• At Least 133 Similar Syndromes Discovered
  Before Since
• Few acknowledge any relation to any others, past
  or current
• Few propose any specific cause, etiology or
  biomarkers
• Hence most never widely adopted or eventually
  abandoned
• But some are still in use and many MCS case are
  still being diagnosed by one or more of them
  depending on the doctor
• History reveals both consistency of underlying
  syndrome and great inconsistency of evolving
  medical awareness, proving doctors rarely ever
  discover anything new, just things they forgot,
  were never taught or did not bother to look up
  first !

10
First Described in 1733 by Dr. George Cheyne as
the English Malady (EM!), aka The Vapours

• To enumerate all the almost infinite Symptoms,
  Degrees and Kinds of Vapours is impossible, and
  perhaps very little to the Purpose.
• In general the symptoms are many, various,
  changeable, shifting from one Place to another,
  and imitating the Symptoms of almost every other
  Distemper described.
• Those who suffer are all of weak Nerves, have
  a great degree of sensibility are quick
  Thinkers, feel Pleasure or Pain the most readily,
  and are of most lively imagination.
• Not withstanding all this, the Disease is as
  much a bodily Distemper as the Small-Pox or a
  Fever.
• Worst in winter cities. Blamed on bad air, bad
  diet bad habits.

11
Some Symptoms of E.M. Cited by Dr Cheyne

• Sometimes there is an Inflation, and an actual
  visible Swelling, to a very considerable Bigness,
  in the Stomach to be seen, especially in the Sex
  women a Coldness or Chilliness upon the
  Extremities, and sometimes Flushing and Burning
  in the Hands and Feet, Cold Damp Sweats,
  Faintings, and Sickness Head-aches either
  behind or over the Eyes, Flies and Atoms
  dancing before the Eyes, a Noise like the dying
  Sounds of Bells, or a Fall of Water, in the Ears
  Yawning, and Stretching, and sometimes a
  Drowsiness or Lethargy, at other times Watching
  and Restlessness, and several other Symptoms,
  which it is impossible to enumerate. Some have
  but a few of these Symptoms, and some all of
  them, and a great many more

12
36 Focus on Allergy, Sensitivity, Neurology or
Toxins

• 1733 The English Malady aka The Vapours
• 1769 Dysesthesia
• 1837 Neuropathy of Nervousness
• 1849 Nervosisme
• 1861 Ménière's Disease
• 1869 Neurasthenia gt1K
• 1892 Hyperaesthesia
• 1894 Autointoxication
• 1921 Chronic CO Poisoning
• 1930 Heat, Cold and Effort
  Sensitiveness

• 1930 Allergic Toxemia
• 1945 Allergic Fatigue and Weakness
• 1945 Hyperventilation Asthma
• 1952 Allergy of Nervous System
• 1954 Cerebral Allergy
• 1956 Specific Adaptation Syn.
• 1957 Familial Dysautonomia gt9K
• 1965 Minimal Brain Dysfunction
• 1965 Delayed Hypersensitivity Reaction gt4K
• 1973 Sensory Integrative Dysfunction
• 1K 1000 references on PubMed

13
Allergy, Sensitivity, Neurology or Toxins
continued

• 1978 Chemical Hypersusceptibility
• 1979 Perinatal Hypoxic- Ischemic Cerebral Syn.
• 1982 Total Allergy Syndrome
• 1983 Sick Building Syndrome
• 1985 20th Century Syndrome
• 1985 Allergic Irritability Syn.
• 1985 Environmental Hypersensitivities
• 1986 Hypersensitivity Syndrome
• 1987 Darkroom Disease
• 1987 Multiple Chemical Sensitivity lt700

1990 Chronic Habitual Hyperventilation
Syn. 1994 Gulf War Syndrome 1996 Multi-Organ
Dysesthesia 1998 Toxicant Induced Loss of
Tolerance 1999 Eco-Syndrome 1999 Multi-Sensory
Sensitivity, aka MUSES Syndrome
14
30 Focus on Variations of 1869 Neurasthenia

• 1875 Spinal Neurasthenia
• 1881 American Nervousness
• 1886 Sexual Neurasthenia
• 1887 Gastric Neurasthenia
• 1889 Neurasthenia Praecox (aka Male N.)
• 1890 Psychosomatic Neurasthenia
• 1891 Female Neurasthenia
• 1893 Syphilitic Neurasthenia
• 1895 Senile Neurasthenia
• 1897 Traumatic Neurasthenia
• 1898 Encephalasthenia

• 1903 Disease of the Century
• 1906 Tropical Neurasthenia
• 1907 Endocrine Neurasthenia
• 1907 Ocular Neurasthenia
• 1908 Digestive Neurasthenia
• 1909 Battleship Neurasthenia
• 1968 Pseudoneurasthenic Syndrome
• 1976 Organic Neurasthenia
• 1976 Neurasthenic Musculoskeletal
  Pain Syndrome

15
Variations of Neurasthenia continued

• 1980 Neurasthenic Neurosis
• 1988 Neurasthenic Fatigue
• Types of Unknown Origin Date Cited by Secondary
  Sources
• Angiopathic Neurasthenia
• Cardiac Neurasthenia
• Cardiovascular Neurasthenia
• Insania Neurasthenia
• Neurasthenia Chemicorum
• Neurasthenia Gravis
• Post-viral Neurasthenia
• Pulsating Neurasthenia

16
42 Focus on Psychiatry or Behaviour

• 1765 Nervous, Hypochondriac or Hysteric
• 1766 Hypochondriasis, aka Hyp or Hypo
• 1859 Briquets Syndrome
• 1871 Hebephrenia
• 1895 Anxiety Neurosis gt28K
• 1904 Phrenasthenia
• 1906 Psychasthenia
• 1912 Autism gt6K
• 1914 Shell Shock Syndrome
• 1916 Battle Fatigue Syndrome
• 1918 War Neurosis
• 1930 Generalized Anxietygt1.5K

• 1938 Suburban Neurosis
• 1944 Aspergers Syndrome
• 1947 Old Sergeant Syndrome
• 1951 Munchausens Syn gt1K
• 1957 Psychogenic Dyspnea and
  Hyperventilation
• 1957 Traumatic Neurosis
• 1965 Asthenic Neurosis
• 1965 Psychogenic Pain Syn
• 1966 Psychovegetative Syn
• 1966 Accident neurosis
• 1966 Hyperactive Child Syn
• 1967 Post Accident Anxiety Syn
• 1968 Chronic Factitious Illness

17
Psychiatry or Behaviour continued

• 1968 Pseudo Combat Fatigue
• 1968 Hyperkinetic Behavior Syn
• 1973 Ecologic Mental Illness
• 1973 Psychalgia
• 1974 Epidemic or Mass Hysteria
• 1977 Pinocchio Syndrome
• 1978 Mass Psychogenic Illness
• 1978 Psychic Possession
• 1980 Post Traumatic Stress Disorder gt6.5K
  (count incl. Traumatic Neurosis)
• 1981 Attention Deficit Disorder, aka ADD
• 1981 Pervasive Developmental Disorder gt7K

1981 Somatization Dis. gt7K 1988 Attention
Deficit Hyperactivity Disorder, aka ADHD,
gt6K (count includes ADD HCS) 1995
Environmental Somatization Syndrome 1996 Iatrog
enic Hypochondriasis 1996 Idiopathic
Environmental Intolerances (not
WHO) 1999 Functional Somatic Syndromes
18
28 Focus on Infection, Trauma, Fatigue or Pain

• 1941 Chronic Fatigue
• 1950 Epidemic Neuromyastheniaaka Icelandic
  Disease, aka Akureyri Fever
• 1956 Encephalomyelitis simulating
  Poliomyelitis, aka Royal Free Hospital
• 1956 Benign ME, aka Myalgic
  Encephalomyelitis lt100
• 1957 Epidemic Postinfectious Neuromyasthenia
• 1958 Irritable Colon Syn
• 1959 Irritable Bowel Syn gt3.5K

• 1857 Remittent Fever, aka Crimea Fever
• 1866 Railway Spine
• 1871 Irritable Heart, aka DaCostas Syndrome
• 1887 Undulating Fever, aka Malta Fever aka
  Mediterranean Fever
• 1904 Fibrositis
• 1934 Chronic Brucellosis
• 1936 Morbid Industrial Fatigue
• 1938 Neurocirculatory Asthenia, aka
  Effort Syndrome

19
And Not Just Described By Doctors -- First
Reported in USA by Edgar Allan Poe

• 1832 1st Report of Symptoms in Loss of Breath
• 1838 Most Detailed Symptoms in Fall of House of
  Usher
• 1839 1st Report of Facial Sign in The Man Who
  Was Used Up
• 1840 1st Report of Cause in Philosophy of
  Furniture
• 1843 1st Report of Medical Debate in The Tell
  Tale HeartNow have I not told you that what you
  mistake for madnessis but overacuteness of the
  senses?
• 1844 1st Report of Successful Therapy in
  Premature Burial
• 1849 Dies as he predicted of Congestion of the
  Brain

20
But Only Charles Baudelaire Recognized Gas
Lighting as the Cause of Poes Symptoms

• "All the documents I have read led me to the
  conviction that
• for Poe the United States was nothing more than
  a vast prison
• which he traversed with the feverish agitation
• of a being made to breathe a sweeter air
• --nothing more than a great gas lighted
  nightmare
• and that his inner, spiritual life, as a poet or
  even as a drunkard,
• was nothing but a perpetual effort to escape the
  influence
• of this unfriendly atmosphere."
• Gas made from coal contained 5 - 50 carbon
  monoxide (CO)
• CO exposure limits today 0.0009 outdoors,
  0.005 occupational

21
Do you know why I so patiently translated Poe?
It was because he was like me.

• REVERSE IMAGE
  TRUE IMAGE
• EDGAR ALLAN POE CHARLES
  BAUDELAIRE

22
And there was perceptible about them, ever and
anon, just that amount of interesting
obliquity EA Poe, 1839
23
Many Great English Writers Also Apparently
Poisoned by Carbon Monoxide
Oscar Wilde
George Bernard Shaw
24
Of Course, Not Just Men and Not Just Then
Jane Austen
J.K. Rowling
25
Tell Tale Face Noted in Certain Nervous
Disorders Even Before Introduction of Gas
Lighting
Her left eyelid remained permanently half
closed and the right angle of her mouth was
considerably drawn aside. Edward Percival, 1813
26
Englands Most Famous Unrecognized Case ?
King George III 1738 1820
Presumed now to have inherited porphyria gas
poisoning was never considered since his illness
began decades before gas lighting.
27
Most Likely Cause Prior to Gas Lighting Coal
bed warmer on display in bedroom of his
grandmother Queen Caroline, Hampton Court
28
CO Role in MCS etc Not Yet Widely Recognized
Excluding Literature on Chronic CO Poisoning,
CO is mentioned in only 11 of 90,000 other
articles

• Fibromyalgia Syndrome 2 (both note not CO)
• Chronic Fatigue Syndrome 2 (1 notes from CO
  the other not CO)
• Generalized Anxiety 1 (notes not CO)
• MCS / MUSES Syndrome 1 (notes from CO)
• Post Traumatic Stress Disorder 2 (both note not
  CO)
• Somatization Disorder 3 (all 3 note not
  CO) Even most MCS patients fail to recognize
  the connection, perhaps because CO is
  odourless, tasteless and invisible.

29
First Only Paper Proposing Connections
Between MCS, CO and Poe

• Donnay, A. International Journal of Toxicology
  199918(6)383-392
• On the recognition of multiple chemical
  sensitivity in medical literature and government
  policy.

30
But CO is Well Known as The Great Imitator and
Already Well Documented to Cause or Worsen

• Anemia
• Angina
• Anosmia (loss of smell)
• Asthma
• Birth Defects
• Blindness
• Deafness

• Depression
• Diabetes
• Hallucinations of all kinds
• Heart Disease
• Mental Retardation
• Parkinsons
• Psychoses

31
Why So Many Syndromes? CO is Both Ubiquitous
Neurotoxin Ubiquitous Neurotransmitter

• CO is 1 Cause of Unintentional Toxic Deaths in
  USA
• CO is 1 Cause of Unintentional Toxic Poisonings
• CO is 1 Air Pollutant more tons/year than any
  other, primarily from industry, vehicles, fires,
  combustion appliances
• CO is also made systemically by all mammals from
  heme breakdown by Heme Oxygenase, the Universal
  Stress Enzyme.
• HO-1 is greatly induced by exposure to any type
  of stress heat, bright light, noise, odors,
  drugs, alcohol and other chemicals, trauma,
  infection, electro magnetic fields, etc.
• CO is not just bound to Hb but bioactive in over
  90 pathways

32
Increased endogenous production of CO from heme
breakdown is documented in

• Diabetes
• Heart Attack
• Heat Stress / Stroke
• Methylene Chloride Poisoning
• Parkinsons
• Pre-Menstrual Syndrome
• Upper Respiratory Tract Infections

• Allergy
• Altitude Sickness
• Alzheimers
• Anemia
• Asthma
• Bronchiectasis
• Cystic Fibrosis

33
All CO-Related Disorders Share Biomarker
Elevated Level of CO in End-Tidal Breath

• Normal bCO (maximum after holding breath 20 to 25
  seconds) Healthy Relaxed Non-Smokers
  0-2 ppm
• Mildly Elevated bCO Borderline Abnormal for
  Non-Smokers 3-4 ppm
• Moderately Elevated bCO Smokers and People
  with CO Disorders 5-24 ppm
• Highly Elevated bCO Recently Smoked or CO
  Poisoned 25-999ppm
• All healthy adults have approx. noon peak and
  midnight trough
• Higher after suppl. oxygen if standing vs.
  sitting vs. supine.

34
How CO Causes MUSES Syndrome

• CO controls sensitization and habituation to
  stressors of all kinds
• Chronic repeated exposures to any stressor
  induces habituation,
• so that higher doses are tolerated with less or
  no sensory awareness.
• Isolated acute exposures (and de-habituation)
  induce sensitization,
• so that lower doses are less tolerated with more
  sensory awareness.
• While exogenous stressors (heat, drugs, alcohol)
  may be avoided,
• endogenous CO produced by HO in response to ANY
  stressor cannot.
• So if/once sensitized to CO via exogenous
  poisoning or dehabituation,
• increased sensory awareness may be provoked by
  ANY stressor
• Result is multi-sensory sensitivity to odours,
  lights, sounds, foods, etc aka MUSES Syndrome
  (aka MCS in adults or autism in children).

35
Curing MUSES Syndrome The Treatments Proposed by
Cheyne and Poe are Still Best

• Dr. George Cheyne in The English Malady, 1733
• Seldom any lasting or solid cure is performd
  till they have sucked in and incorporated the
  sweet balmy clear Air of the Country.
• Diet will do infinitely more than Exercise and
  have more lasting Effects, but both should be
  joined.
• Certainly the best of all is where Amusement
  or Entertainment of the Mind is joined with
  Bodily Labour and Constant Change of Air.
• Edgar Allan Poe in The Premature Burial, 1844
• I took vigorous exercise. I breathed the free
  air of Heaven. I thought upon other subjects
  than Death. I discarded my medical books.

36
Where to Look for Evidence of CO Poisoning Today

• Test CO in end tidal breath after holding
  breath for 20 seconds (healthy relaxed
  non-smoker should be 0 to 2 ppm).
• Monitor indoor CO levels with a digital detector
  near combustion appliances, especially unvented
  ones like gas ovens and gas logs.
• Monitor CO levels in homes with attached garages
  after vehicles are started and driven out.
• Monitor CO levels in motor vehicles while idling
  and driving.
• Look for the asymetrically drooping eye and
  mouth that mark the Tell Tale Face of CO
  Poisoning and ask about any multi-sensory
  sensitivity to lights, odors, noises, tastes,
  touch and heat or cold.