A relatively new term is making the rounds in media healthcare coverage: “Cyberchondria” It’s being used to describe people who search their symptoms online and become more anxious as a result. On the surface, it sounds like a harmless bit of jargon. However, for the Myalgic Encephalomyelitis (M.E) community, already battling decades of dismissal, misdiagnosis, and misinformation, it lands very differently.
For us, “Cyberchondria” isn’t a quirky new buzzword, it’s a rebranding of the same old stigma that has harmed people with M.E. for generations.
People with M.E. often spend years, sometimes decades, seeking answers. Many never receive a diagnosis at all. Those who do frequently endure endless rounds of tests, contradictory explanations, clinicians who have never been trained in M.E. dismissal of symptoms as stress, anxiety, or “just being run down”.
The UK’s ME/CFS Delivery Plan openly acknowledged what patients have known for years, most healthcare professionals receive little to no education on M.E. (something I have been tackling with Stripy Lightbulb CIC since 2018)
When M.E. patients turn to the internet: AI, patient forums, charity websites, research summaries, lived‑experience blogs, it’s not because they’re irrational or anxious. It’s because they’re trying to fill a knowledge gap that the healthcare system created.
In many cases, the internet genuinely does contain more accurate, up‑to‑date information on M.E. than the average GP has been taught.
That’s not “cyberchondria”, that’s the survival instinct of people experiencing poor care.
M.E. has long been entangled with medical misogyny. Historically, women reporting complex, poorly understood symptoms were branded with terms like “Hysteria”, “Hypochondria”(sound familiar?!), “Somatisation”, “Anxiety-driven illness”.
These labels weren’t just inaccurate, they were weaponised to silence patients and avoid investigating their symptoms properly. So when a new term like “Cyberchondria” emerges, aimed disproportionately at people who have been dismissed for years, it’s hard not to see the pattern.
How is this any different from calling patients hysterical? It’s simply updated language for the same old disbelief.
M.E. is frequently misdiagnosed as Depression, Anxiety, Burnout, Fibromyalgia, Long COVID and “Medically unexplained symptoms”. Patients are often told their symptoms are psychological long before anyone considers a biomedical explanation. Many are left to research their own symptoms because no one else is doing it for them. Then, when they do research, they’re labelled cyberchondriacs.
It’s a trap with no exit.
One of the most troubling developments is the suggestion that people labelled as “Cyberchondriacs” should be offered Cognitive Behavioural Therapy (CBT) to reduce their “health anxiety.” Reminder, CBT is something our community has fought very hard against for years and NICE has now said CBT should not be recommended as a ‘treatment’ for M.E. My concern is that a person will be told they have “Cyberchondria” and to do CBT, delaying the M.E. diagnosis even further. CBT could make their symptoms worsen significantly before they have even had the chance to obtain an accurate diagnosis.
This “Cyberchondria” framing does two harmful things:
1. It shifts attention away from the symptoms that drove the person online in the first place.
Instead of asking “Why did this patient feel unheard or unsupported?” the system asks “How do we stop them Googling?”
2. It encourages clinicians to ignore or minimise physical symptoms.
If a patient is pre‑labelled as anxious, their reports of pain, fatigue, neurological issues, or post‑exertional malaise are more likely to be dismissed.
For the M.E. community, this is painfully familiar, we’ve been here before.
CBT is not inherently harmful to the wider population but using it as a tool to redirect attention away from biomedical symptoms is a step backwards. It risks reinforcing the very attitudes the ME/CFS Delivery Plan is trying to dismantle.
People with M.E. don’t turn to the internet because they’re irrationally worried. They turn to the internet because their symptoms are real, their experiences are dismissed, their clinicians lack training, their diagnostic journey is long and lonely, their condition is poorly understood, and their community has been historically disbelieved
If the healthcare system provided timely, accurate, compassionate care, patients wouldn’t need to do their own research.
“Cyberchondria” isn’t the problem, the problem is a system that leaves patients with no other option.
The M.E. community deserves better than recycled labels and psychological explanations for biomedical symptoms. We deserve clinicians who are educated, curious, and willing to listen. We deserve a system that recognises the harm caused by decades of dismissal and works to rebuild trust, not undermine it further.
If healthcare professionals want to reduce “Cyberchondria,” the solution is simple. Give patients accurate information, timely diagnosis, and respectful care. The Googling and AI questions will take care of themselves.