Chronic Fatigue Syndrome: My Demonic Battle & Recovery

The personal essay, a genre often relegated to the “soft” side of journalism, has delivered a bracingly honest account of chronic illness and the frustrating, often gendered, path to diagnosis. Hermione Hoby’s deeply reported and beautifully written piece, detailing her decades-long struggle with what ultimately proved to be ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), isn’t just a memoir; it’s a stark indictment of a medical system that historically dismisses female pain and a nuanced exploration of the power – and potential pitfalls – of mind-body therapies. The story resonates not as an isolated incident, but as a reflection of a growing crisis of chronic illness, particularly post-pandemic, and the urgent need for a more empathetic and scientifically rigorous approach to diagnosis and treatment.

Hoby’s narrative is particularly timely. The COVID-19 pandemic has dramatically increased the number of people experiencing long-term symptoms, often mirroring those of ME/CFS. This surge has put immense strain on already overburdened healthcare systems and amplified the challenges of diagnosis and care. The article’s reference to “medical misogyny” – a term gaining increasing recognition and even considered for Macquarie Dictionary’s word of the year – underscores a long-standing problem that continues to plague healthcare. The dismissal of women’s pain, often attributed to psychological factors, isn’t a new phenomenon, but the growing awareness of its prevalence is a crucial step towards systemic change. The author’s journey through countless doctors, blood tests, and ultimately, self-diagnosis, is a sadly familiar story for many chronic illness sufferers.

The exploration of brain retraining is particularly insightful. While acknowledging the skepticism surrounding such therapies, Hoby doesn’t dismiss them outright. Instead, she approaches them with a critical curiosity, detailing her experience with a coach and the exercises involved. This nuanced perspective is important, as the field of neuro-immune disorders is still relatively nascent, and innovative approaches are needed. However, the author rightly points out the ethical concerns surrounding therapies that place the onus of healing solely on the individual, particularly within a healthcare system that often fails to provide adequate support. The critique of “wellness culture” and its potential to blame individuals for their illnesses is a vital counterpoint to the often-optimistic rhetoric surrounding mind-body practices.

What happens next? Several key developments are likely. First, we can expect continued research into the underlying biological mechanisms of ME/CFS and other chronic illnesses. The recent focus on the Epstein-Barr virus as a potential trigger, mentioned in the article, is a promising avenue of investigation. Second, the demand for more specialized clinics and healthcare professionals trained in diagnosing and treating these conditions will continue to grow. Third, and perhaps most importantly, there will be increasing pressure on healthcare systems to address the issue of medical misogyny and provide more equitable care for all patients. The growing patient advocacy movements, fueled by stories like Hoby’s, will play a crucial role in driving these changes. Finally, the debate surrounding therapies like brain retraining will intensify, demanding rigorous scientific evaluation and a careful consideration of their ethical implications. The author’s own cyclical experience with illness – periods of remission followed by relapse – underscores the need for ongoing research and a more holistic understanding of these complex conditions. The search for a “cure” may be elusive, but improved management, compassionate care, and a more equitable healthcare system are within reach.

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