As someone living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), I have experienced firsthand the challenges and misunderstandings surrounding this debilitating condition. Despite being classified as a neurological disease by NICE, many within the NHS remain unaware of its severity and complexity. Too often, ME/CFS is dismissed as mere fatigue or incorrectly labelled as a psychological ailment, contributing to harmful stigmas and preventing patients from receiving proper care.

ME/CFS affects over 250,000 people in the UK alone, with symptoms ranging from severe fatigue to disabling pain, cognitive impairments, and Post-Exertional Malaise (PEM) – when symptoms worsen following even minor physical or mental exertion. Research shows that PEM is a critical indicator of ME/CFS, and recommendations of exercise as a treatment can exacerbate this condition, sometimes leading to severe health declines.

Here is why we need these e-learning modules to be mandatory to be completed.

Following the tragic death of 27-year-old Maeve Boothby-O'Neill from natural causes due to severe myalgic encephalomyelitis (ME/CFS), an assistant coroner issued a landmark Prevention of Future Deaths Report. Maeve’s severe illness left her completely bedbound and unable to chew or easily drink, leading to severe malnutrition and starvation. In her official report, the coroner explicitly highlighted a high risk of future deaths because of an absolute lack of specialist NHS beds or commissioned services for severe ME, an absence of dedicated research funding, and "extremely limited" medical training for doctorson how to treat the disease.

 Despite these official warnings, health professionals are still not being educated.

A recent Freedom of Information (FOI) request revealed the shocking reality of voluntary education: out of hundreds of thousands of NHS workers, only 547 people completed the introductory module, and an astonishingly low 51 NHS accounts completed the specialized training for severe ME/CFS.

There is a pressing need for NHS staff to accurately understand and treat ME/CFS. Making ME/CFS learning modules mandatory for all NHS staff is a vital step toward this goal. These modules should cover all aspects of the condition: mild, moderate, severe and very severe, ensuring comprehensive knowledge and understanding. Educating NHS professionals will lead to more accurate diagnoses, empathetic treatment, and improved patient outcomes.

People with ME/CFS deserve respect and proper medical care, free from the harm of outdated perspectives and stigmas. By implementing mandatory training, we can challenge misconceptions and improve the healthcare experiences of thousands suffering from this condition.

We urge NHS leadership, healthcare providers, and policymakers to take immediate action to make ME/CFS education a priority. Please, sign this petition to support mandatory NHS learning modules on ME/CFS and help us ensure patients receive the understanding and care they so desperately need.