(c) 2002 by ALBERT DONNAY Multiple Chemical Sensitivity... or MUSES Syndrome ? Presented to the Environmental Law Centre’s International MCS Conference

(c) 2002 by ALBERT DONNAY

Multiple Chemical SensitivityMultiple Chemical Sensitivity... or MUSES Syndrome ?... or MUSES Syndrome ?

Presented to the Environmental Law Centre’sInternational MCS Conference

8 April 2002, Conway Hall, London

(c) 2002 by Albert Donnay, MHS MCS Referral & Resources, Inc

[email protected]


What is Multiple Chemical SensitivityWhat is Multiple Chemical Sensitivity??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 removed. Best of 7 MCS Definitions at identifying MCS cases

(McKeown-Eyssen et al, Arch Env Health 2001;56:406-12)


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


What Objective Findings Are Reported in MCS 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


Who is Funding This MCS ResearchWho 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.


What View Predominates: Physical or Psychiatric? What View Predominates: Physical or Psychiatric?

Overlaps:Only 11% of First Authors and 30% of Publishers have ever supported more than one view


On What Do All Agree? Prevalence is Very HighOn 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 they’re “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.


But is MCS Only a Disorder of Chemical Sensitivity?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)

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.

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.


Might MCS Be Something Else as Critics ClaimMight 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 !


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


Some Symptoms of E.M. Cited by Dr CheyneSome 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…”


36 Focus on Allergy, Sensitivity, Neurology or Toxins36 Focus on Allergy, Sensitivity, Neurology or Toxins1733 The English Malady

aka The Vapours1769 Dysesthesia1837 Neuropathy of

Nervousness 1849 Nervosisme1861 Ménière's Disease1869 Neurasthenia >1K*1892 Hyperaesthesia1894 Autointoxication1921 Chronic CO Poisoning1930 Heat, Cold and & Effort

Sensitiveness

1930 Allergic Toxemia

1945 Allergic Fatigue and Weakness

1945 Hyperventilation Asthma1952 Allergy of Nervous System1954 Cerebral Allergy 1956 Specific Adaptation Syn.1957 Familial Dysautonomia >9K1965 Minimal Brain Dysfunction1965 Delayed Hypersensitivity

Reaction >4K1973 Sensory Integrative

Dysfunction* 1K = 1000 references on PubMed


Allergy, Sensitivity, Neurology or ToxinsAllergy, Sensitivity, Neurology or Toxins continued …continued …1978 Chemical

Hypersusceptibility1979 Perinatal Hypoxic-

Ischemic Cerebral Syn.1982 Total Allergy Syndrome1983 Sick Building Syndrome1985 20th Century Syndrome1985 Allergic Irritability Syn. 1985 Environmental Hypersensitivities1986 Hypersensitivity Syndrome 1987 Darkroom Disease1987 Multiple Chemical Sensitivity

<700

1990 Chronic Habitual Hyperventilation Syn.

1994 Gulf War Syndrome1996 Multi-Organ Dysesthesia1998 Toxicant Induced Loss

of Tolerance1999 Eco-Syndrome1999 Multi-Sensory Sensitivity,

aka MUSES Syndrome


30 Focus on Variations of 1869 Neurasthenia30 Focus on Variations of 1869 Neurasthenia::1875 Spinal Neurasthenia1881 American Nervousness1886 Sexual Neurasthenia1887 Gastric Neurasthenia1889 Neurasthenia

Praecox (aka Male N.)1890 Psychosomatic

Neurasthenia1891 Female Neurasthenia1893 Syphilitic Neurasthenia1895 Senile Neurasthenia1897 Traumatic Neurasthenia1898 Encephalasthenia

1903 Disease of the Century1906 Tropical Neurasthenia1907 Endocrine Neurasthenia1907 Ocular Neurasthenia1908 Digestive Neurasthenia1909 Battleship Neurasthenia1968 Pseudoneurasthenic

Syndrome1976 Organic Neurasthenia1976 Neurasthenic

Musculoskeletal Pain Syndrome


Variations of NeurastheniaVariations of Neurasthenia continued …continued …1980 Neurasthenic Neurosis 1988 Neurasthenic Fatigue

Types of Unknown Origin & Date Cited by Secondary SourcesAngiopathic Neurasthenia Cardiac NeurastheniaCardiovascular Neurasthenia Insania NeurastheniaNeurasthenia Chemicorum Neurasthenia GravisPost-viral NeurastheniaPulsating Neurasthenia


42 Focus on Psychiatry or Behaviour42 Focus on Psychiatry or Behaviour 1765 Nervous,

Hypochondriac or Hysteric1766 Hypochondriasis,

aka Hyp or Hypo1859 Briquet’s Syndrome1871 Hebephrenia1895 Anxiety Neurosis >28K1904 Phrenasthenia 1906 Psychasthenia1912 Autism >6K1914 Shell Shock Syndrome1916 Battle Fatigue Syndrome1918 War Neurosis1930 Generalized

Anxiety>1.5K

1938 Suburban Neurosis 1944 Asperger’s Syndrome1947 Old Sergeant Syndrome1951 Munchausen’s Syn >1K1957 Psychogenic Dyspnea

and Hyperventilation1957 Traumatic Neurosis1965 Asthenic Neurosis1965 Psychogenic Pain Syn1966 Psychovegetative Syn1966 Accident neurosis 1966 Hyperactive Child Syn1967 Post Accident Anxiety

Syn1968 Chronic Factitious

Illness


Psychiatry or BehaviourPsychiatry or Behaviour continued … continued …

1968 Pseudo Combat Fatigue1968 Hyperkinetic Behavior Syn1973 Ecologic Mental Illness1973 Psychalgia 1974 Epidemic or Mass Hysteria1977 Pinocchio Syndrome1978 Mass Psychogenic Illness1978 Psychic Possession1980 Post Traumatic Stress

Disorder >6.5K (countincl. Traumatic Neurosis)

1981 Attention Deficit Disorder, aka ADD

1981 Pervasive DevelopmentalDisorder >7K

1981 Somatization Dis. >7K1988 Attention Deficit

Hyperactivity Disorder,

aka ADHD, >6K (count includes ADD &

HCS)1995 Environmental

Somatization Syndrome

1996 Iatrogenic Hypochondriasis

1996 Idiopathic Environmental Intolerances (not WHO)

1999 Functional Somatic Syndromes


28 Focus on Infection, Trauma, Fatigue or Pain28 Focus on Infection, Trauma, Fatigue or Pain1857 Remittent Fever,

aka Crimea Fever1866 Railway Spine1871 Irritable Heart,

aka DaCosta’s Syndrome1887 Undulating Fever,

aka Malta Fever aka Mediterranean Fever

1904 Fibrositis1934 Chronic Brucellosis1936 Morbid Industrial Fatigue 1938 Neurocirculatory

Asthenia, aka Effort Syndrome

1941 Chronic Fatigue 1950 Epidemic Neuromyasthenia

aka Icelandic Disease, aka Akureyri Fever

1956 Encephalomyelitis simulating Poliomyelitis, aka Royal Free Hospital

1956 Benign ME, aka Myalgic Encephalomyelitis <100

1957 Epidemic Postinfectious Neuromyasthenia

1958 Irritable Colon Syn1959 Irritable Bowel Syn >3.5K


And Not Just Described By Doctors -- And Not Just Described By Doctors -- First Reported in USA by Edgar Allan PoeFirst 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 Heart

“Now 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”


But Only Charles Baudelaire Recognized But Only Charles Baudelaire Recognized Gas Lighting as the Cause of Poe’s SymptomsGas Lighting as the Cause of Poe’s 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 agitationof 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

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

REVERSE IMAGE TRUE IMAGE

EDGAR ALLAN POE CHARLES BAUDELAIRE


“And there was perceptible about them, ever and anon, just that amount of interesting obliquity…”

EA Poe, 1839


Many Great English Writers Many Great English Writers Also Apparently Poisoned by Carbon MonoxideAlso Apparently Poisoned by Carbon Monoxide

Oscar WildeGeorge Bernard Shaw


Of Course, Not Just Men and Not Just ThenOf Course, Not Just Men and Not Just Then

Jane Austen J.K. Rowling


Tell Tale Face Noted in “Certain Nervous Disorders” Tell Tale Face Noted in “Certain Nervous Disorders” Even Before Introduction of Gas LightingEven 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


England’s Most Famous Unrecognized CaseEngland’s Most Famous Unrecognized Case ? ?

King George IIIKing George III 1738 – 18201738 – 1820 Presumed now to have

inherited porphyria: gas poisoning was never considered since his illness began decades before gas lighting.


Most Likely Cause Most Likely Cause Prior to Gas LightingPrior to Gas Lighting Coal bed warmer on display Coal bed warmer on display in bedroom of his grandmother in bedroom of his grandmother Queen Caroline, Hampton CourtQueen Caroline, Hampton Court


CO Role in “MCS etc” Not Yet Widely Recognized: CO Role in “MCS etc” Not Yet Widely Recognized: Excluding Literature on Chronic CO Poisoning, Excluding Literature on Chronic CO Poisoning, CO is mentioned in only 11 of 90,000 other articles 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.

First & Only Paper Proposing Connections First & Only Paper Proposing Connections Between MCS, CO and PoeBetween 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 But CO is Well Known as “The Great Imitator” and Already Well Documented to Cause or WorsenAlready 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 Parkinson’s Psychoses


Why So Many Syndromes? CO is Both Why So Many Syndromes? CO is Both Ubiquitous Neurotoxin & Ubiquitous NeurotransmitterUbiquitous 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


Increased endogenous production of CO Increased endogenous production of CO from heme breakdown is documented infrom heme breakdown is documented in::AllergyAltitude SicknessAlzheimer’sAnemiaAsthmaBronchiectasisCystic Fibrosis

Diabetes Heart Attack Heat Stress / StrokeMethylene Chloride PoisoningParkinson’sPre-Menstrual SyndromeUpper Respiratory Tract Infections


All CO-Related Disorders Share Biomarker: All CO-Related Disorders Share Biomarker: Elevated Level of CO in End-Tidal Breath 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 = 25-999+ppm

All healthy adults have approx. noon peak and midnight trough Higher after suppl. oxygen & if standing vs. sitting vs. supine.


How CO Causes MUSES SyndromeHow 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).


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

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.”

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.”


Where to Look for Evidence of CO Poisoning TodayWhere 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.

Documents

(c) 2002 by ALBERT DONNAY Multiple Chemical Sensitivity... or MUSES Syndrome ? Presented to the Environmental Law Centre’s International MCS Conference