(In)Visibility Online: The Benefits of Online Patient Forums for People with a Hidden Illness: The Case of Multiple Chemical Sensitivity (MCS)

Phillips, Tarryn; Rees, Tyson

doi:10.1111/maq.12397

Cited by 15 publications

(15 citation statements)

References 35 publications

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“…In particular, it remains unclear whether MCS is primarily a psychosomatic condition in which mental factors precede the physical complaints. This includes dedicated online forums [17]. According to the biopsychosocial disease model, MCS may also represent a "circular", dynamic condition characterized by the interaction of psychosocial, ecological and biological processes (see Fuchs [15] or Egger [16]).…”

Section: Pathogenesismentioning

confidence: 99%

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Multiple chemical sensitivity (MCS) – a guide for dermatologists on how to manage affected individuals

Harter¹,

Hammel²,

Fleming

et al. 2020

J Deutsche Derma Gesell

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Summary Multiple chemical sensitivity (MCS) is a condition characterized by a subjectively perceived increase in sensitivity to environmental chemicals. Individuals affected report a wide variety of nonspecific complaints, and frequently attribute cutaneous and mucosal symptoms to chemical exposures. Dermatologists should therefore be familiar with this condition. MCS is a diagnosis of exclusion. Other causes for the patients’ symptoms should be ruled out by routine laboratory tests, allergy tests and, if indicated, monitoring for toxic (environmental) substances. The primary job of dermatologists is to rule out skin diseases or hypersensitivities as possible causes of the complaints. Interdisciplinary patient management is essential, especially in severe cases in which those affected have problems coping with everyday life. Relevant specialties in this context include environmental medicine, psychosomatic medicine as well as occupational and social medicine. Cutaneous symptoms are usually addressed with symptomatic treatment using basic skin care products. There are currently no evidence‐based treatment recommendations for MCS. It is crucial that MCS patients be protected from unnecessary treatments and thus from mental, social and financial strain. In addition to medical skills, managing MCS patients requires communicative and psychosocial competence in particular. Physicians involved in the treatment will benefit from training in psychotherapy. Irrespective of the mechanisms that lead to MCS, diagnosis and treatment of this condition require an actively supportive attitude towards these patients, a good doctor‐patient relationship and interdisciplinary cooperation.

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Section: Pathogenesismentioning

confidence: 99%

“…Given these uncertainties, some MCS patients advocate for more research into the effects of chemicals on humans and for a reduction in the use of chemical agents in everyday life. This includes dedicated online forums [17].…”

Section: Pathogenesismentioning

confidence: 99%

Multiple chemical sensitivity (MCS) – a guide for dermatologists on how to manage affected individuals

Harter¹,

Hammel²,

Fleming

et al. 2020

J Deutsche Derma Gesell

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show abstract

“…Ob es sich also um eine primär psychosomatische, primär somatopsychische oder vielmehr eine zirkuläre Problematik handelt, kann sich erst mit der endgültigen Aufklärung der Pathophysiologie bestimmen lassen. Einige Betroffene mit MCS engagieren sich aufgrund dieser Unklarheiten für die Erforschung der Auswirkungen von Chemikalien auf den Menschen beziehungsweise für eine Reduktion chemischer Stoffe im alltäglichen Leben und organisieren sich dafür unter anderem in Online-Foren [17].…”

Section: Bei Der Medizinischen Untersuchung Personen Mit Mcs Wird Keiunclassified

Multiple Chemikaliensensibilität (MCS) – Ein Leitfaden für die Dermatologie zum Umgang mit den Betroffenen

Harter

Hammel²,

Fleming

et al. 2020

J Deutsche Derma Gesell

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ZusammenfassungMultiple Chemikaliensensibilität (MCS) ist eine subjektiv erlebte, erhöhte Empfindlichkeit gegenüber Chemikalien aus der Umwelt. Betroffene reagieren mit vielfältigen, unspezifischen Beschwerden. Symptome an Haut und Schleimhäuten werden von Personen mit MCS häufig auf eine Exposition gegenüber Chemikalien zurückgeführt. Auch Dermatologen sollten sich deshalb mit dieser Gesundheitsstörung auseinandersetzen. Multiple Chemikaliensensibilität ist eine Ausschlussdiagnose. Durch Basisdiagnostik, Allergiediagnostik oder Umweltdiagnostik sollen andere mögliche Ursachen für Symptome ausgeschlossen werden. Die Dermatologie sollte in erster Linie Hauterkrankungen und Allergien als mögliche Ursachen für Beschwerden abklären. Interdisziplinäre Betreuung der Betroffenen ist insbesondere bei schweren Verläufen von Relevanz, beispielsweise, wenn Betroffene in Ihrer Alltagsbewältigung eingeschränkt sind. Wichtige Disziplinen sind dabei unter anderen Umweltmedizin, Psychosomatik, Arbeits-und Sozialmedizin. Hautbeschwerden werden durch die Dermatologie symptomatisch, zum Beispiel mit Hautbasispflege, behandelt. Evidenzbasierte Therapieempfehlungen zur Behandlung von MCS gibt es bislang nicht. Menschen mit MCS sollen vor überflüssigen Behandlungen und damit vor psychischen, sozialen und finanziellen Belastungen geschützt werden. Für den Umgang mit Betroffenen sind neben fachlichen, naturwissenschaftlichen Kompetenzen vor allem auch kommunikative und psychosoziale Kompetenzen relevant. Psychotherapeutische Weiterbildung für behandelnde Personen ist hilfreich. Unabhängig von den Mechanismen, die zu MCS führen, ist eine aktiv unterstützende Grundhaltung behandelnder Personen, eine gute Arzt-Patient-Beziehung sowie interdisziplinäre

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“…Studies that explore patient activists' or advocates' use of digital media are relatively few in number (Maslen & Lupton, 2020;Phillips & Rees, 2017;Rocha et al, 2018). The studies that have been undertaken show that digital media can provide novel opportunities for the agentic self, including co-producing and sharing knowledge and enacting chronic illness (e.g.…”

Section: Introductionmentioning

confidence: 99%

“…The studies that have been undertaken show that digital media can provide novel opportunities for the agentic self, including co-producing and sharing knowledge and enacting chronic illness (e.g. Foster, 2016;Gonzalez-Polledo, 2016;Phillips & Rees, 2017). Indeed, proponents of digital media, which include many policymakers, clinicians and technology specialists, view these media as a means to empower individuals and communities through access to greater information and enhanced choice (see Lupton, 2013;Petersen, 2019).…”

Section: Introductionmentioning

confidence: 99%

‘I’m not an activist!’: digital self-advocacy in online patient communities

Schermuly

Petersen

Anderson

2020

Critical Public Health

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For patient communities, digital media have dramatically transformed the options for action. This includes working collectively to change policies in ways that would have been difficult, if at all possible, before the internet. Yet, to date, the impacts of patients' growing use of digital media on their sense of collective agency have been little explored. Drawing on the findings from an Australian study on patients' use of digital media to access treatments (involving 50 interviews with participants from HIV/ AIDS, breast cancer and neurodegenerative communities) and using a governmentality lens, this article sheds light on the changing character of patients' sense of agency in an age of digital media. We identify a shift in patients' conceptions of their agentic selves associated with the growing use of these media-from 'activists' to 'advocates'-and consider the implications for critical public health. As we argue, this 'digital selfadvocacy' is manifest in patients' accounts of how they use digital media to achieve their goals and reflects the responsibilisation that is a hallmark of neoliberal governance. We suggest that digital self-advocacy offers a restricted vision of patient agency that limits rather than facilitates actions needed to respond to crises and to advance health justice. In our conclusion we consider whether the context and the nature of a condition or disease may also have a bearing on patients' sense of agency in an age of digital media, making reference to patient responses to a new illness phenomenon dubbed 'long COVID-19ʹ.

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(In)Visibility Online: The Benefits of Online Patient Forums for People with a Hidden Illness: The Case of Multiple Chemical Sensitivity (MCS)

Cited by 15 publications

References 35 publications

Multiple chemical sensitivity (MCS) – a guide for dermatologists on how to manage affected individuals

Multiple chemical sensitivity (MCS) – a guide for dermatologists on how to manage affected individuals

Multiple Chemikaliensensibilität (MCS) – Ein Leitfaden für die Dermatologie zum Umgang mit den Betroffenen

‘I’m not an activist!’: digital self-advocacy in online patient communities

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