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Multiple Chemical Sensitivity

The content of this document is OFFICIAL. Please note: The research and literature reviews collated by our TAB Research Team are not to be shared external to the Branch. These are for internal TAB use only and are intended to assist our advisors with their reasonable and necessary decision-making. Delegates have access to a wide variety of comprehensive guidance material. If Delegates require further information on access or planning matters, they are to call the TAPS line for advice. The Research Team are unable to ensure that the information listed below provides an accurate & up-to-date snapshot of these matters

Research question: Is multiple chemical sensitivity disorder/idiopathic environmental intolerance a recognised clinical diagnosis in Australia or overseas? If it is, what are the diagnostic features of the disorder? What evidence/literature is available to support the aetiology of MCSD? What medical specialist is best placed to diagnose and/or treat multiple chemical sensitivity disorder (MCSD)? Are there any clinical guidelines for treatment of MCSD? Is there any evidence that MCSD can be treated/cured/ameliorated? Date: 21/12/23 Requestor: Olivia s47F - personal pri Endorsed by: n/a Researcher: Aaron s47F - personal privacy Cleared by: Stephanie s47F - personal privacy

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  1. Contents Multiple Chemical Sensitivity ………………………………………………………………………………………… 1

  2. Contents ……………………………………………………………………………………………………….. 2

  3. Summary ………………………………………………………………………………………………………. 2

  4. What is Multiple Chemical Sensitivity? ……………………………………………………………….. 3 3.1 Alternative terminology and related conditions …………………………………………………. 3 3.2 Classification and recognition as a distinct condition …………………………………………. 4

  5. Population characteristics ………………………………………………………………………………… 4

  6. Symptoms ……………………………………………………………………………………………………… 5

  7. Triggers …………………………………………………………………………………………………………. 5

  8. Functional impact ……………………………………………………………………………………………. 5

  9. Cause …………………………………………………………………………………………………………… 6

  10. Diagnosis ………………………………………………………………………………………………………. 6

  11. Management ………………………………………………………………………………………………….. 7

  12. Multiple Chemical Sensitivity in Australia ……………………………………………………………. 7

  13. References ……………………………………………………………………………………………………. 9

  14. Summary There is considerable uncertainty regarding the diagnosis, causes and management or treatment of Multiple Chemical Sensitivity (MCS). Symptoms and severity vary widely between individuals. People with MCS symptoms often experience significant functional impact including difficulties with activities of daily living and withdrawal from social and economic participation. Attempts have been made to achieve consensus on diagnostic criteria for MCS. However, these criteria have been applied inconsistently in scientific and clinical practice. In general, MCS is taken to involve development of non-specific symptoms associated with multiple organ systems after exposure to substances at a lower level than would typically elicit a reaction. Symptoms generally resolve when the irritant is removed. Due to uncertainty surrounding MCS and the involvement of multiple body systems, it is not clear which medical specialty is best placed to diagnose or treat the condition. MCS is not recognised as a distinct condition in Australia, though some state health authorities have issued policies or guidelines regarding its treatment. There are no widely agreed

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treatment methods. Patient management should involve recognising that person with MCS is experiencing symptoms even if a cause cannot be identified. Symptom management typically involves identifying and avoiding or removing the substance associated with symptom onset. 3. What is Multiple Chemical Sensitivity? Multiple Chemical Sensitivity is a condition in which varied physical and psychological symptoms are associated with exposure to substances such as drugs, solvents, odorants or materials at a dose that would typically not elicit a harmful reaction in the general population. Each person with MCS may experience different symptoms with varied severity and functional impact. Symptoms are nonspecific and involve multiple body systems and typically resolve when the substance is removed (Hempel et al, 2023; Zucco & Doty, 2022; Damiani et al, 2021). Despite tens of thousands of publications relating to MCS, there are still only pockets of consensus (Damiani et al, 2021; Multiple Chemical Sensitivity, 1999) and no widespread agreement on its defining characteristics or whether MCS should be considered a distinct condition (Hempel et al, 2023; SA Health, 2023). For example, Bjerregaard et al (2022) limit the scope of MCS to reactions to airborne chemicals. Zucco and Doty (2022) suggest reactants are often petroleum-based, while Damiani et al (2021) include biological agents such as moulds and other microbes.

3.1 Alternative terminology and related conditions Other terms used to describe MCS include acquired intolerance to solvents, chemical acquired immune deficiency syndrome, chemical injury, chemical hypersensitivity, chemical intolerance, chemophobia, chemical sensitivity; ecological mental illness, environmental hypersensitivity, environmental illness, environmental intolerance, environmental sensitivity, sick building syndrome, symptoms associated with environmental factors, total allergy syndrome, toxicant- induced loss of tolerance, toxic encephalopathy, toxic injury, and twentieth century disease (Hempel et al, 2023; Zucco & Dotti, 2022; Haanes et al, 2020; Department of Health and Ageing, 2010). Hempel et al (2023) suggest that the lack of terminological consensus reflects a lack of consensus on the clinical features or causes of MCS. Following the World Health Organisation, South Australia’s Department of Health (SA Health) suggests that a more contemporary term for MCS is idiopathic environmental intolerance (IEI) (SA Health, 2023; De Luca et al, 2011). IEI may be used as a synonym for MCS, though it has a broader referent. IEI includes reactions to biological and physical agents in the environment such as electromagnetic frequencies, moulds, fungi or other microbes (SA Health, 2023; Safer Care Victoria, 2023). MCS may also be classified as a sensitivity related illness (De Luca et la, 2011; Genuis, 2010) or functional somatic disorder (Bjeeredaard et al, 2022). MCS is often compared with food

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intolerances, allergy conditions and sensitivity-related conditions with non-specific symptoms for which recognisable causes have not been found such as fibromyalgia, Gulf War syndrome, chronic fatigue syndrome, sick building syndrome, and electromagnetic radiation exposure (Zucco & Doty, 2022; De Luca et la, 2011). People with MCS are frequently diagnosed with one or more of these other conditions (Bjeeredaard et al, 2022), though some suggest their presence should exclude a diagnosis of MSC (Driesen et al, 2020).

3.2 Classification and recognition as a distinct condition There is ongoing debate among researchers whether MCS is primarily psychogenic or pathogenetic, and therefore whether it should be considered a psychiatric condition or another type of medical condition (Molot et al, 2023; Molot, 2021; Carrier et al, 2021). Further, there is no clear consensus on whether MCS is a distinct condition (Hempel et al, 2023; SA Health, 2023; Zucco & Doty, 2022; Rossi & Pitidis, 2018). In 2011, De Luca et al identified difficulties preventing a clinical consensus on the classification and recognition of MCS: (i) the wide array of symptoms and signs allegedly linkable to environmental triggers exposure, (ii) the diversity of the subjects affected, reacting on the basis of individual sensitivity and possibly genetic predisposition, (iii) the mere absence of proven pathogenic mechanisms and consequently of clear-cut diagnostic criteria, (iv) the wide spectrum of possible triggers and the absence of clear dose-dependent reactions, generating methodological difficulties and bias in provocation studies (De Luca et al, 2011, p.2771). Despite the recent research and public health interest in MCS, the situation has not changed from De Luca et al’s description (Hempel et al, 2023; SA Health, 2023; Zucco & Doty, 2022; Rossi & Pitidis, 2018). 4. Population characteristics People diagnosed with MCS or who self-identify as having MCS are more likely to be women of middle age, with higher educational achievement and higher socioeconomic status (Zucco & Doty, 2022; Bjerregaard et al, 2022). People diagnosed with MCS may be more likely to have asthma, chronic fatigue syndrome, fibromyalgia and sedentary or inactive lifestyles (Bjerregaard et al, 2022; Steineman, 2018a-b).

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  1. Symptoms People with MCS have reported symptoms including: dizziness, fainting confusion, brain fog, memory loss, fever, seizures, mood changes, irritability, anxiety, depression, headache, chest pain, changes in heart rhythm, nausea, abdominal pain, bloating, gas and diarrhoea, fatigue, nasal congestion, itching and sneezing, shortness of breath, asthma attacks, flu-like symptoms, skin rashes, muscle weakness, muscle and joint pain (Hempel et al, 2023; Safer Care Victoria, 2023; SA Health, 2023; Dreisen et al, 2020; Steineman, 2018a). In a survey study of 1098 Australians (Steineman, 2018a), the most common symptoms reported in the sample were respiratory (47%, eg. difficulty breathing, coughing, shortness of breath) and mucosal symptoms (41%, eg. watery or red eyes, nasal congestion, sneezing). Other frequent symptoms included migraines (31%) and skin problems (32%).
  2. Triggers Common substances that trigger symptoms in people with MCS include carpeting, soft furnishings, printing ink, plastics, synthetic fabrics, soaps, shampoos and other cleaning products, perfumes, air fresheners and deoderants, foods, anaesthetics and other pharmaceuticals, paints, glues, solvents, formaldehyde, pesticides, herbicides, cigarette smoke, wood smoke, mould, chlorinated and fluoridated water, carbon monoxide, mercury (Hempel et al, 2023; Safer Care Victoria, 2023; SA Health, 2023; Zucco & Doty, 2022; Driesen et al, 2020). A common feature of these substances may be smell (Carrier et al, 2021; Steineman, 2018a-b), though this is disputed (Molot et al, 2023).
  3. Functional impact In their survey study, Steineman found potentially disabling health effects were reported in 55.4% of respondents with MCS (Steineman, 2018a). Furthermore, 77.5% of people with MCS reported avoiding places because of fragranced products and 52.1% had missed work or lost a job because of exposure to fragranced products in the workplace (Steineman, 2018a). Another survey study from the same author found that 76% of American respondents with MCS reported potentially disabling health problems (Steineman, 2018b). Steineman’s results must be taken with caution due to the demographic inconsistency with other studies. In particular, the proportion of women and men diagnosed with MCS does not agree with the majority of other studies, which find significantly more women than men diagnosed with MCS (Zucco & doty, 2022; Bjerregaard et al, 2022). One study (Steineman, 2018a) found only a slightly increased percentage of women diagnosed with MCS (49.5%/50.5%), and the other (Steineman et al, 2018b) found a much higher percentage of men diagnosed with MCS (58%/42%). Driesen et al (2020) reviewed 13 qualitative studies analysing social and occupational impact of MCS. They found participants consistently reported limited access to relationships, social

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settings, work and other occupational settings due to lack of understanding or accommodations and the continued presence of fragrances and other triggers in social and occupational environments. Participants also reported reduction in quality of life due to reduced income or reduced social engagement. The frequent reporting of withdrawal from social and economic activities agrees with Steineman’s (2018a; 2018b) survey findings. However, Driesen et al (2020) suggest caution in interpreting the results due to significant quality concerns with the reviewed studies including lack of rigour in design and analysis and failure to report ethics standards or approval. They also found just under half of the studies were conducted by a single research team, potentially biasing results. Bjerregaard et al (2022) suggest that activity limitation may be due to health effects such as respiratory issues and pain as well as the avoidance of triggers. This may be partly due to coincidence of MCS and other conditions such as fibromyalgia, chronic fatigue syndrome or irritable bowel syndrome. 8. Cause There is no consensus on the cause of MCS (SA Health, 2023; Safer Care Victoria, 2023). Some argue that the illness is primarily psychogenic and therefore should be classed as a psychiatric disorder (Carrier et al, 2021). Others argue that there are pathophysiological mechanisms underlying the illness (Molot et al, 2023; Molot, 2021). 9. Diagnosis An Italian group (Damiani et al, 2021) proposed screening and diagnosis should include first round blood tests, followed by administering the Brief Environmental Exposure and Sensitivity Inventory and the Quick Environmental Exposure and Sensitivity Inventory (Söderholm et al, 2021). At which point diagnosis can be made according to the following criteria: • presence for over 6 months with a worsening of both quality of life and organic functions • recurrent and reproducible symptoms also involving the nervous system with a characteristic hypersensitivity to odours • symptoms involving the central nervous system and at least one other symptom • reproducible responses to triggers at a low concentration • a response to unrelated chemicals • an improvement of symptoms or even a complete resolution after the removal of the trigger (Damiani et al, 2021).

However, this process has not been consistently implemented and there is currently no widely agreed upon diagnostic practice or set of diagnostic criteria (Binkley, 2023; Hempel et al, 2023; SA Health, 2023; Zucco & Doty, 2022).

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  1. Management Many treatment and management strategies have been proposed to address MCS. However, because there is no agree aetiology, it is unclear what systems or functions a treatment should target (Molot et al, 2023; Zucco & Doty, 2022). There is some evidence that standard treatments for mental health concerns, such as cognitive behavioural therapy, can alleviate these symptoms in people with MCS (Binkley, 2023). However, at present the only consistent recommendation is trigger avoidance (SA Health, 2023; Safer Care Victoria, 2023; Molot et al, 2023; Zucco & Doty, 2022). It is not clear what medical specialty is best placed to manage people with MCS. If MCS is primarily a psychiatric condition, a psychiatrist or mental health specialist is likely to be the most appropriate clinician (Carrier et al, 2021). However, it has also been suggested that a GP is the most appropriate primary care provider due to their experience with unspecified illnesses and overall health (Department of Health and Ageing, 2010).
  2. Multiple Chemical Sensitivity in Australia Some Australian governments, government departments, or agencies and organisations associated with Australian governments, have published policies, statements or guidelines regarding MCS/IEI. There is a common approach among these resources that the symptoms of MCS/IEI can cause significant distress and reasonable adjustments can be made by institutions and service providers. Federal MCS/IEI does not occur in the Australian modification to the International Classification of Disease (Independent Health and Aged Care Pricing Authority, 2022) and is not a recognised medical condition in Australia (SA Health, 2023; Australian Disability Clearinghouse on Education and Training, n.d. a). A 2010 report from the federal Department of Health and Ageing notes: The proposal to assign a unique classification code for MCS in 2003 was rejected. The experts concluded that there was a lack of clinical or laboratory evidence of a pathological process, difficulties in delineating patients from others within a wide spectrum of intolerance/irritation from smells and fumes in the general population, a lack of internationally accepted diagnostic criteria or validated diagnostic tests and a lack of clarity of the relationship between MCS and other syndromes with overlapping clinical features e.g. chronic fatigue syndrome or fibromyalgia (Department of Health and Ageing, 2010, p.15) At the same time, the report acknowledges that symptoms of MCS can have a substantial effect on people’s lives:

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Clinicians need to accept the patient’s issues as a debilitating and disabling illness irrespective of whether the clinician recognises or accepts the presence of a condition, in order to minimise patients seeking unnecessary referrals and harmful or costly but non beneficial treatment. …The basic management, as with all chronic illness, involves engaging with the patient and maintaining a long-term supportive relationship whilst encouraging self-management (Department of Health and Ageing, 2010, p.71-72). The Australian Disability Clearinghouse on Education and Training (ADCET) are funded by the Australian federal Department of Education and hosted by the University of Tasmania. ADCET (n.d.) published a report from consultancy firm DLM Solutions (Leahy & Evans, 2015) which argues for increased recognition and accommodation for people with MCS/IEI. The ADCET’s role is to disseminate information relating to disability and education. They note that they take quality control measures before publishing information but also that publication on the ADCET’s website does not mean that the content is endorsed by ADCET or the Department of Education (ADCET, n.d. b). The Australian Radiation Protection and Nuclear Safety Agency (ARPANSA) has published advice on a related condition: idiopathic environmental intolerance attributed to electromagnetic fields (IEI-EMF), also called electromagnetic hypersensitivity: On the basis of current scientific information, there is no established evidence that EHS is caused by EMF at levels below exposure guidelines. ARPANSA acknowledges that the health symptoms experienced by the affected individuals are real and can be a disabling problem, and advise those affected to seek medical advice from a qualified medical specialist (ARPANSA, n.d.). Other sources have referred to a guideline from the Australian Human Rights Commission regarding access for people with chemical sensitivity (NSW Health, 2015; ADCET, n.d. a). However, this document is no longer stored on the Human Rights Commission website. New South Wales NSW Health (2015) describes the Department of Health and Ageing report (2010) and an Australian Human Rights Commission guideline (no longer available) and advises “Reasonable accommodations should be made to support people who identify as having MCS and who have a treatment plan by a registered medical practitioner when they attend NSW Health facilities.” Victoria Safer Care Victoria is an administrative unit of the Victorian state government that advises health services on how to provide safer, evidence-based services. Their MCS clinical guideline (Safer Care, 2023) provides some general information about MCS while acknowledging that symptoms of MCS can cause suffering and disability.

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South Australia The SA Health (2023) fact sheet on IEI acknowledges that MCS/IEI “is not recognised as a medical condition in Australia and most countries”. The factsheet advises that the service providers should aim to develop a respectful relationship with people experiencing symptoms of MCS/IEI. This may include identifying triggers and modifying the environment as far as possible. Older guidelines The West Australian Country Health service (2012) published an MCS guideline for hospital and other service providers. This was based on the South Australian approach. It is not clear if the guideline is still endorsed by the West Australian government. Queensland health has previously stated that the government does not “categorise MCS as a recognised clinical syndrome due to the absence of clinical consensus”, however “patients who classify themselves as suffering from MCS may have health needs that require treatment in the public health system, and therefore should receive individualised medical and psychological assessment and treatment as determined by the treating medical officer” (Queensland Health, 2011, p.7). The position statement is no longer available on the Queensland Health website and it is not clear if they have an updated policy. Canberra Health Services included a policy on MCS in 2016 (Canberra Hospital and Health Services,2016). The document still appears to be hosted by the ACT government but is not listed in their hospital policies. 12. References Australian Disability Clearinghouse for Education and Training. (n.d. a). Disability Specific Adjustments: Multiple Chemical Sensitivity in the Education and Training Setting. https://www.adcet.edu.au/disability-practitioner/reasonable-adjustments/disability- specific-adjustments/multiple-chemical-sensitivity Australian Disability Clearinghouse for Education and Training. (n.d. b). Disclaimer and Privacy. https://www.adcet.edu.au/disclaimer Bjerregaard, A. A., Petersen, M. W., Skovbjerg, S., Gormsen, L. K., Cedeño-Laurent, J. G., Jørgensen, T., Linneberg, A., & Dantoft, T. M. (2022). Physiological Health and Physical Performance in Multiple Chemical Sensitivity-Described in the General Population. International journal of environmental research and public health, 19(15), 9039. https://doi.org/10.3390/ijerph19159039 Canberra Hospital and Health Services. (2016). Multiple Chemical Sensitivites. ACT Government. https://view.officeapps.live.com/op/view.aspx?src=https%3A%2F%2Fwww.health.act.go v.au%2Fsites%2Fdefault%2Ffiles%2F2018-

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09%2FMultiple%2520Chemical%2520Sensitivities%2520Procedure.docx&wdOrigin=B ROWSELINK Carrier, G., Tremblay, M. E. & Allard, R. (2021). Multiple chemical sensitivity syndrome, an integrative approach to identifying the pathophysiological mechanisms – Key Messages and Summary. Institut national de santé publique du Québec: Government of Quebec. https://www.inspq.qc.ca/en/publications/2730 Damiani, G., Alessandrini, M., Caccamo, D., Cormano, A., Guzzi, G., Mazzatenta, A., Micarelli, A., Migliore, A., Piroli, A., Bianca, M., Tapparo, O., & Pigatto, P. D. M. (2021). Italian Expert Consensus on Clinical and Therapeutic Management of Multiple Chemical Sensitivity (MCS). International journal of environmental research and public health, 18(21), 11294. https://doi.org/10.3390/ijerph182111294 Department of Health and Ageing. (2010). Multiple Chemical Sensitivity: identifying key research needs. Australian Government. https://sacfs.asn.au/download/MCS Draft Report Feb 2010 PDF.pdf De Luca, C., Raskovic, D., Pacifico, V., Thai, J. C., & Korkina, L. (2011). The search for reliable biomarkers of disease in multiple chemical sensitivity and other environmental intolerances. International journal of environmental research and public health, 8(7), 2770–2797. https://doi.org/10.3390/ijerph8072770 Driesen, L., Patton, R., & John, M. (2020). The impact of multiple chemical sensitivity on people’s social and occupational functioning; a systematic review of qualitative research studies. Journal of psychosomatic research, 132, 109964. https://doi.org/10.1016/j.jpsychores.2020.109964 Genuis S. J. (2010). Sensitivity-related illness: the escalating pandemic of allergy, food intolerance and chemical sensitivity. The Science of the total environment, 408(24), 6047–6061. https://doi.org/10.1016/j.scitotenv.2010.08.047 Haanes, J. V., Nordin, S., Hillert, L., Witthöft, M., van Kamp, I., van Thriel, C., & Van den Bergh, O. (2020). “Symptoms associated with environmental factors” (SAEF) - Towards a paradigm shift regarding “idiopathic environmental intolerance” and related phenomena. Journal of psychosomatic research, 131, 109955. Advance online publication. https://doi.org/10.1016/j.jpsychores.2020.109955 Hempel, S., Danz, M., Robinson, K. A., Bolshakova, M., Rodriguez, J., Mears, A., Pham, C., Yagyu, S., Motala, A., Tolentino, D., Akbari, O., & Johnston, J. (2023). Multiple chemical sensitivity scoping review protocol: overview of research and MCS construct. BMJ open, 13(9), e072098. https://doi.org/10.1136/bmjopen-2023-072098 Independent Health and Aged Care Pricing Authority. (2022). The International Statistical Classification of Diseases and Related Health Problems, Tenth Revision, Australian Modification (ICD-10-AM)– Chronicle Part 1: A00–T98, Z00–Z99 – First Edition to Twelfth Edition.

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Leahy, M. & Evans, P. (2015). Multiple Chemical Sensitivity in the Education and Training Setting. DLM Solutions. https://dlmsolutions.org/wp-content/uploads/2014/08/Multiple- Chemical-Sensitivity-in-the-Education-and-Training-Setting-Long.pdf Molot, J., Sears, M., & Anisman, H. (2023). Multiple chemical sensitivity: It’s time to catch up to the science. Neuroscience and biobehavioral reviews, 151, 105227. https://doi.org/10.1016/j.neubiorev.2023.105227 Molot, J. (2021). Response to the report of the National Institute of Public Health Québec (INSPQ) on Multiple Chemical Sensitivity (MCS). Association pour la santé environnementale du Québec / Environmental Health Association of Québec (ASEQ- EHAQ. https://aseq-ehaq.ca/pdf/Response INSPQ Short-Summary EN.pdf Multiple Chemical Sensitivity: A 1999 Consensus. (1999). Archives of Environmental Health: An International Journal, 54(3), 147-149, https://doi.org/10.1080/00039899909602251 NSW Health. (2015). Multiple Chemical Sensitivity Disorder. Government of New South Wales. https://www.health.nsw.gov.au/factsheets/Pages/multiple-chemical-sensitivity.aspx#R2 Queensland Health. (2011). Multiple chemical sensitivity. Queensland government. https://vdocuments.mx/queensland-health-position-statement-on-multiple-chemical-mcs- may-be-recognised.html?page=1 Rossi, S., & Pitidis, A. (2018). Multiple chemical sensitivity: review of the state of the art in epidemiology, diagnosis, and future perspectives. Journal of occupational and environmental medicine, 60(2), 138. https://doi.org/10.1097/JOM.0000000000001215 Safer Care Victoria. (2023). Multiple Chemical Sensitivities. Victorian State Government. https://www.safercare.vic.gov.au/best-practice-improvement/clinical-guidance/emergency- care/multiple-chemical-sensitivity Söderholm, A., Liljelind, I., Edvardsson, B., & Nordin, S. (2021). Development and evaluation of a questionnaire instrument for chemical intolerance, based on the International Classification of Functioning, Disability and Health. Disability and Rehabilitation, 43(12), 1756-1763, https://doi.org/10.1080/09638288.2019.1672812 Steinemann A. (2018a). Prevalence and effects of multiple chemical sensitivities in Australia. Preventive medicine reports, 10, 191–194. https://doi.org/10.1016/j.pmedr.2018.03.007 Steinemann A. (2018b). National Prevalence and Effects of Multiple Chemical Sensitivities. Journal of occupational and environmental medicine, 60(3), e152–e156. https://doi.org/10.1097/JOM.0000000000001272 West Australian Country Health Service. (2012). Multiple Chemical Sensitivity / Chemical hypersensitivity. Government of West Australia. https://www.parliament.wa.gov.au/publications/tabledpapers.nsf/displaypaper/3814445c4f 180533eea73781482579f2000ec798/$file/4445.pdf

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Zucco, G. M., & Doty, R. L. (2021). Multiple Chemical Sensitivity. Brain sciences, 12(1), 46. https://doi.org/10.3390/brainsci12010046

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