Decades of Mystery Illness: Could Brain Retraining Offer a Path to Recovery?
In the late 1990s, at a secondary school in Croydon, a deputy headmistress with a stern demeanor and a voice like a blunt knife on rough surfaces referred to a student's prolonged absence as a "mystery illness" in a typed letter to her parents. For Hermione Hoby, then just 11 years old, this phrase would echo for decades as she grappled with a debilitating condition that left doctors baffled and her life in a state of perpetual uncertainty.
The Onset of Symptoms and Medical Frustration
After contracting what seemed like a normal virus, Hermione never fully recovered. Instead, she found herself trapped in a grey, unchanging state marked by a headache, sore throat, swollen lymph nodes, body pains, fatigue, and weakness. A particularly alarming symptom was postural orthostatic tachycardia syndrome, causing faintness and momentary blackouts upon sitting or standing up. "Being ill felt – and still feels – more like a thick, obscuring cloud," she recalls, describing how her blood felt like old glue and how, during bad episodes, she couldn't locate her mind or personality, making reading impossible and TV abrasive.
For a shy 11-year-old, communicating these symptoms was a challenge. The most visible sign was the headache, leading doctors to explore benign intracranial hypertension, though this was inconclusively floated and dropped. The deputy headmistress's letter implied that Hermione needed to stop this nonsense and return to academic pursuits, casting a shadow of doubt over her suffering.
The Long Road to Diagnosis
Over the years, Hermione moved from the suburbs to London and then to New York in her mid-20s, encountering doctor after doctor who essentially told her there was nothing physically wrong. This experience reflects the broader issue of medical misogyny, where female patients are often dismissed in a system historically centered on the male body. One doctor even suggested she eat more vegetables, smirking when she protested that she already did. "Anger requires energy," Hermione notes, reflecting on how the sicker she was, the less able she felt to advocate for herself.
It wasn't until her early 30s that her then-partner, a skilled Googler, proposed she might have myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS). Initially hesitant, Hermione eventually saw an ME/CFS specialist in New York, a bluff Englishman with a patrician confidence who confirmed the diagnosis. For the first time, she left a doctor's office in tears of relief, feeling she could wield the diagnosis like an FBI badge. Yet, there was still no standard treatment, and the psychological balm of diagnosis did little to mitigate the debilitating episodes that continued to plague her.
Exploring Brain Retraining as a Solution
After moving to Boulder, Colorado, in late 2018, Hermione noticed a slight improvement in her health, attributing it to sunshine and mountain trails. However, in late 2023, she experienced her worst episode yet, leading her to seek alternative therapies. Desperate, she asked her body what it needed, and the answer came as "healing touch." This led her to an energy healer who suggested brain retraining, a concept that initially clashed with her skepticism. "It sounded like a version of 'it's all in your head,'" she admits, having spent decades insisting her suffering was physical.
Brain retraining is based on two principles: the mind-body connection and the idea that conditions like ME/CFS involve the brain erroneously perceiving threat, keeping the body in a state of illness. Hermione contacted Jason McTiernan, a wellness coach with an engineer's mindset, who guided her through exercises aimed at rewiring neural pathways. These included:
- Watching positive video testimonials and recovery stories.
- Creating an aspirational vision board.
- Writing down daily achievements and depositing them in a jar.
- Performing deep relaxation techniques and affirmations up to 20 times a day.
The goal was to revive the parasympathetic nervous system, moving from "fight or flight" to "rest and digest." Despite initial resistance, Hermione immersed herself in the process, even visualising running trails while bedridden. On 13 May 2024, she sent Jason a selfie from the top of a trail, feeling a surge of quasi-religious mania and believing she was cured.
Setbacks and Ongoing Struggles
However, the triumph was short-lived. Later that year, Hermione was flattened by another episode, and brain retraining failed to work this time. She filled pages with exercises, but nothing changed, leading to a loss of faith. Reflecting on the experience, she acknowledges that brain retraining wasn't miraculous, but it also wasn't nonsense. "It's just me and my still-mysterious illness," she concludes, rejecting the idea that illness must have meaning.
Hermione's journey highlights the complexities of chronic illness, where hope and acceptance often clash. She now focuses on management and mitigation, seeing a new specialist for tests without promises of a cure. Illness, she realises, is random and meaningless, demanding ongoing work rather than grand insights. While she believes she'll hike mountains again, she also accepts that bad episodes will return, with no demon to blame—just her and her condition.
