Multiple Chemical Sensitivity or MUSES Syndrome Presented to

Multiple Chemical Sensitivity. . . or MUSES Syndrome ? Presented to the Environmental Law Centre’s International MCS Conference 8 April 2002, Conway Hall, London (c) 2002 by Albert Donnay, MHS MCS Referral & Resources, Inc www. mcsrr. org adonnay@jhu. edu (c) 2002 by ALBERT DONNAY

What is Multiple Chemical Sensitivity? u 1999 Consensus Definition (Arch Env Health 1999; 54: 147 -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 (c) 2002 by ALBERT DONNAY

Reported ? List compiled by JHU Multi-Center Study of MCS Immunology u CARDIOVASCULAR 9 u DIGESTIVE 18 u EARS // HEARING 7 u EYES // VISION 12 u GENITO-URINARY 10 u HEAD 6 u MOUTH // TASTE 14 u MUSCULOSKEL. 14 u NECK 3 u NERVOUS SYSTEM 43 u NOSE // SMELL 10 u SYSTEMIC // OTHER 17 u VASCULAR 5 u REPRODUCTIVE 17 u RESPIRATORY 6 u SKIN // TOUCH 7 u THROAT 5 TOTAL # SYMPTOMS = 203 (c) 2002 by ALBERT DONNAY

What Objective Findings Are Reported in MCS ? u Abnormal Blood & Musculoskeletal Plasma Abnormalities u Impaired Circulation u Neurocognitive u Impaired Heart Function Deficiencies u Impaired Detox Pathways u Nose & Smell Abnormalitites u Ear & Hearing u Porphyrin Enzyme Abnormalities Abnorm. u Endocrine Deficiencies u Respiratory Impairment u Eye & Vision u Sensory Nerve Abnormalities Impairment u Gastrointestinal u Skin Tone Abnormalities Impairment u Vestibular Impairment u Immune System (c) 2002 by ALBERT DONNAY u

Who is Funding This MCS Research? u Most MCS-related papers do not acknowledge any funding ! u But 10 US federal agencies fund over $25 M per year: ATSDR, CDC, DOD, DOE, DVA, EPA, NIDCD, NIEHS, NIH & NIOSH u US Dept of Defense also funds MCS studies of UK veterans u State governments in California, Maryland, Missouri, New Jersey, New Mexico & Washington have funded (c) 2002 by ALBERT DONNAY

What View Predominates: Physical or Psychiatric? Overlaps: Only 11% of First Authors and 30% of Publishers have ever supported more than one view (c) 2002 by ALBERT DONNAY

On What Do All Agree? Prevalence is Very High ! u 5 US studies find 28% - 37% of adults say they are “especially sensitive” to common chemical exposures u 4 US studies find 15% - 17% say they’re “unusually sensitive” u 6. 3% in CA and 1. 9% in NM say they have been diagnosed by a medical professional with MCS or “environmental illness” u US, Canadian and UK studies of Gulf War veterans (c) 2002 by ALBERT DONNAY

But is MCS Only a Disorder of Chemical Sensitivity? Not just ODOURS: LIGHT & SOUND HYPERSENSITIVITY are very strongly associated with MCS: p < 0. 00001 (Miller, Tox Ind Health, 1999; 15: 370 -85) u When asked, MCS patients also In an report audience poll hypersensitivity to: conducted at this point, approx. 75 TASTES // FOODS people reported having all TOUCH // PRESSURE // PAINthese sensory sensitivities since ill. Only one HOT or COLD WEATHER (an American) reported ELECTROMAGNETIC FIELDS having just chemical sensitivity, aka pure MCS. HEAVY METALS (c) 2002 by ALBERT DONNAY u

Might MCS Be Something Else as Critics Claim? u Not New or Unique in English or French Medical Literature u At Least 133 Similar Syndromes “Discovered” Before & Since u Few acknowledge any relation to any others, past or current u Few propose any specific cause, etiology or biomarkers u Hence most never widely adopted or eventually abandoned u But some are still in use and many MCS case are still being diagnosed by one or more of them (c) 2002 by ALBERT DONNAY

Cheyne as the English Malady (EM!), aka The Vapours u “To enumerate all the almost infinite Symptoms, Degrees and Kinds of Vapours is impossible, and perhaps very little to the Purpose. u In general … the symptoms are many, various, changeable, shifting from one Place to another, and imitating the Symptoms of almost every other Distemper described. ” u “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. ” 2002 by ALBERT u “Not withstanding all this, the Disease is as (c) much a DONNAY

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 allbyof them, (c) 2002 ALBERT DONNAY

36 Focus on Allergy, Sensitivity, Neurology o Toxins 1733 The English Malady 1930 Allergic Toxemia aka The Vapours 1945 Allergic Fatigue and Weakness 1769 Dysesthesia 1945 Hyperventilation 1837 Neuropathy of Asthma Nervousness 1952 Allergy of Nervous 1849 Nervosisme System 1861 Ménière's Disease 1954 Cerebral Allergy 1869 Neurasthenia >1 K* 1956 Specific Adaptation 1892 Hyperaesthesia Syn. Familial 1894 Autointoxication 1957 Dysautonomia >9 K 1921 Chronic CO 1965 Minimal Brain Poisoning 1930 Heat, Cold and. Dysfunction (c) 2002 by ALBERT DONNAY

Allergy, Sensitivity, Neurology or Toxins continued … 1990 Chronic Habitual Chemical Hyperventilation Hypersusceptibility Syn. 1979 Perinatal Hypoxic 1994 Gulf War Syndrome Ischemic Cerebral Syn. 1982 Total Allergy Syndrome 1996 Multi-Organ 1983 Sick Building Syndrome Dysesthesia 1985 20 th Century Syndrome 1998 Toxicant Induced 1985 Allergic Irritability Loss Syn. 1985 Environmental of Tolerance 1999 Eco-Syndrome Hypersensitivities 1999 Multi-Sensory 1986 Hypersensitivity Sensitivity, Syndrome aka MUSES (c) 2002 by ALBERT DONNAY 1987 Darkroom Disease 1978

30 Focus on Variations of 1869 Neurasthenia: 1875 Spinal Neurasthenia 1903 Disease of the 1881 American Nervousness Century 1886 Sexual 1906 Tropical Neurasthenia 1907 Endocrine 1887 Gastric Neurasthenia 1889 Neurasthenia 1907 Ocular Neurasthenia Praecox (aka Male N. ) 1908 Digestive 1890 Psychosomatic Neurasthenia 1909 Battleship 1891 Female Neurasthenia 1968 Pseudoneurasthenic 1893 Syphilitic Syndrome Neurasthenia 1976 Organic 1895 Senile Neurasthenia(c) 2002 by ALBERT DONNAY

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 Chemicorum Neurasthenia Gravis Post-viral Neurasthenia Pulsating Neurasthenia (c) 2002 by ALBERT DONNAY

42 Focus on Psychiatry or Behaviour 1938 Suburban Neurosis 1765 Nervous, 1944 Asperger’s Syndrome Hypochondriac or 1947 Old Sergeant Hysteric Syndrome 1766 Hypochondriasis, 1951 Munchausen’s Syn aka Hyp or Hypo 1859 Briquet’s Syndrome >1 K 1957 Psychogenic 1871 Hebephrenia Dyspnea 1895 Anxiety Neurosis and Hyperventilation >28 K 1904 Phrenasthenia 1957 Traumatic Neurosis 1906 Psychasthenia 1965 Asthenic Neurosis 1965 Psychogenic Pain 1912 Autism >6 K Syn 1914 Shell Shock 1966 Psychovegetative Syndrome (c) 2002 by ALBERT DONNAY

Psychiatry or Behaviour continued … 1968 Pseudo Combat 1981 Somatization Dis. Fatigue >7 K 1968 Hyperkinetic 1988 Attention Deficit Behavior Syn Hyperactivity 1973 Ecologic Mental Disorder, Illness aka ADHD, >6 K 1973 Psychalgia (count includes 1974 Epidemic or Mass ADD & HCS) Hysteria 1995 Environmental 1977 Pinocchio Somatization Syndrome 1978 Mass Psychogenic 1996 Iatrogenic Illness Hypochondriasis 1978 Psychic 1996 Idiopathic (c) 2002 by ALBERT DONNAY Possession Environmental

28 Focus on Infection, Trauma, Fatigue or Pain Remittent Fever, 1941 aka Crimea Fever 1866 Railway Spine 1950 1871 Irritable Heart, aka Da. Costa’s Syndrome 1956 1887 Undulating Fever, aka Malta Fever aka Mediterranean Fever 1956 1904 Fibrositis 1934 Chronic Brucellosis 1857 Chronic Fatigue Epidemic Neuromyasthenia aka Icelandic Disease, aka Akureyri Fever Encephalomyelitis simulating Poliomyelitis, aka Royal Free Hospital Benign ME, aka Myalgic Encephalomyelitis (c) 2002 by ALBERT DONNAY

And Not Just Described By Doctors -First Reported in USA by Edgar Allan Poe u 1832: 1 st Report of Symptoms in Loss of Breath u 1838: Most Detailed Symptoms in Fall of House of Usher u 1839: 1 st Report of Facial Sign in The Man Who Was Used Up u 1840: 1 st Report of Cause in Philosophy of Furniture u 1843: 1 st Report of Medical Debate in The Tell Tale Heart “Now have I not told you that what you (c)mistake 2002 by ALBERT DONNAY

But Only Charles Baudelaire Recognized Gas Lighting as the Cause of Poe’s Symptoms u "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 (c) 2002 by ALBERT DONNAY of this unfriendly atmosphere. "

“Do you know why I so patiently translated Poe? It was because he was like me. ” REVERSE IMAGE EDGAR ALLAN POE BAUDELAIRE TRUE IMAGE CHARLES

“And there was perceptible about them, ever and anon, just that amount of interesting obliquity…” EA Poe, 1839 (c) 2002 by ALBERT DONNAY

Many Great English Writers Also Apparently Poisoned by Carbon Monoxide George Bernard Shaw Oscar Wilde (c) 2002 by ALBERT DONNAY

Of Course, Not Just Men and Not Just Then Jane Austen J. K. Rowling (c) 2002 by ALBERT DONNAY

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 (c) 2002 by ALBERT DONNAY

England’s 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 (c) 2002 by ALBERT DONNAY

Coal bed warmer on display in bedroom of his grandmother Queen Caroline, Hampton Court (c) 2002 by ALBERT DONNAY

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 (c) 2002 by ALBERT DONNAY “not CO”)

First & Only Paper Proposing Connections Between MCS, CO and Poe Donnay, A. International Journal of Toxicology 1999; 18(6): 383 -392 “On the recognition of multiple chemical sensitivity in medical literature and government policy. ”

But CO is Well Known as “The Great Imitator” and Already Well Documented to Cause or Worsen: u Anemia u Depression u Angina u Diabetes u Anosmia (loss of smell) u Asthma u Birth Defects u Blindness u Deafness u Hallucinations of all kinds u Heart Disease u Mental Retardation u Parkinson’s u Psychoses (c) 2002 by ALBERT DONNAY

Ubiquitous Neurotoxin & Ubiquitous Neurotransmitter u CO is #1 Cause of Unintentional Toxic Deaths in USA u CO is #1 Cause of Unintentional Toxic Poisonings u CO is #1 Air Pollutant: more tons/year than any other, primarily from industry, vehicles, fires, combustion appliances u CO is also made systemically by all mammals from heme breakdown by Heme Oxygenase, the Universal Stress Enzyme. (c) 2002 by ALBERT DONNAY

Increased endogenous production of CO from heme breakdown is documented in: u. Allergy u. Altitude u. Diabetes Sickness u. Heart Attack u. Alzheimer’s u. Heat Stress / Stroke u. Anemia u. Methylene Chloride u. Asthma Poisoning u. Bronchiectasis u. Parkinson’s u. Cystic Fibrosis u. Pre-Menstrual Syndrome u. Upper Respiratory Tract Infections (c) 2002 by ALBERT DONNAY

Biomarker: Elevated Level of CO in End-Tidal Breath u Normal b. CO (maximum after holding breath 20 to 25 seconds) Healthy Relaxed Non-Smokers = 02 ppm u Mildly Elevated b. CO Borderline Abnormal for Non-Smokers = 3 -4 ppm u Moderately Elevated b. CO Smokers and People with CO Disorders = 524 ppm u Highly Elevated b. CO (c) 2002 by ALBERT DONNAY

How CO Causes MUSES Syndrome u CO controls sensitization and habituation to stressors of all kinds u Chronic repeated exposures to any stressor induces habituation, so that higher doses are tolerated with less or no sensory awareness. u Isolated acute exposures (and de-habituation) induce sensitization, so that lower doses are less tolerated with more sensory awareness. u While exogenous stressors (heat, drugs, alcohol) may be avoided, (c) 2002 ALBERT DONNAY endogenous CO produced by HO in response toby. ANY

Curing MUSES Syndrome: The Treatments Proposed by Cheyne and Poe are Still Best u Dr. George Cheyne in The English Malady, 1733: “Seldom any lasting or solid cure is perform’d … 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. ” u Edgar Allan Poe in The Premature Burial, 1844: 2002 by ALBERT DONNAY “I took vigorous exercise. I breathed the free air(c)of Heaven.

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. (c) 2002 by ALBERT DONNAY