From testimony to accountability: the case for an international ME inquiry

 

"Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed" 

 

 - George Monbiot, 24 Sept 2026, qouted in his article in The Guardian

George Monbiot’s Guardian column of 24 September 2026 brings public attention to experiences that people with myalgic encephalomyelitis (ME) have described for decades. He shares accounts of patients being disbelieved, given inappropriate advice or left without care. He ends by calling for a public inquiry.

ME Advocates Ireland (MEAI) welcomes his willingness to listen to patients and bring their testimony to a wider audience. For people who have repeatedly had to explain their illness to the professionals they turned to for help, being heard matters. Public attention must now lead to scrutiny of the decisions that shaped their care.

“The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.”

 

          - Valerie Eliot Smith, 2019, quoted in her 2022 blog post

 

In “A manifesto for change: from strategy to inquiry”, Valerie Eliot Smith proposed that UK patient groups build a coordinated communications strategy with professional support. Her longer-term goal was a judge-led public inquiry into the history of ME and the treatment of patients in the UK. She also argued that harmful portrayals of patients had damaged their reputations, individually and collectively, and that changing the public narrative was part of building support for an inquiry.

Her proposal raises a question for advocates elsewhere: how do we build the evidence, public understanding and cooperation needed to examine what happened in our own countries?

The UK shows why examining the past matters. A government consultation recorded patients’ experiences of stigma, disbelief and neglect. In 2021, NICE changed its guidance: it says graded exercise therapy should not be offered to people with ME and that cognitive behavioural therapy is not a cure. Following the death of Maeve Boothby O’Neill, a coroner’s report identified gaps in guidance and provision for people with severe ME and warned of a risk of future deaths.

These developments raise questions that a plan for future care cannot answer. How were patients treated over the years? What happened when they reported harm or disbelief? When concerns were raised, did institutions respond?

In Ireland, those questions are urgent. The HSE says that there is currently no agreed Irish guideline for diagnosing, treating or managing ME. It received funding in 2025 to develop its first national clinical guideline. That welcome work may improve future care, but it cannot establish what patients experienced before it, why gaps persisted or how complaints were handled. Ireland needs an independent examination shaped by people with ME and their carers.

National inquiries should hear patients and families, examine records, and investigate clinical advice, professional training, access to specialist and home care, disability and welfare assessments, safeguarding practices and complaints. They should establish whether patients were dismissed or directed towards care that worsened their condition. Their findings must be grounded in evidence, published openly and followed by recommendations with deadlines for a response.

The need also extends beyond national borders. In 2020, the European Parliament acknowledged patients’ reports of stigma and called for better recognition of ME and more biomedical research. Public hearings in the European Parliament could hear patients from several countries and compare approaches to care and patient safety. An independent international commission, developed with patient organisations, could examine recurring patterns beyond Europe.

International work would complement inquiries within individual countries. It could ask when warnings about harm were raised, how institutions responded and what happened to people with severe ME who could not reach a clinic or advocate for themselves. Participation must be possible for housebound and bedbound people, and those giving testimony must be treated with care. National inquiries would still be needed to examine records and decisions at home.

George Monbiot has helped bring this crisis into public view. Valerie Eliot Smith has previously described how patients could organise towards a UK inquiry. 

MEAI believes it is time to build on that call in Ireland and internationally: 

"Hear the patients, examine the records, account for the harm and change the systems that allowed it to continue."