Published on 23 October, 2026

It is so important to distinguish M.E. from the term CFS, which is so commonly used for the condition. Wendy Boutilier’s new book, Myalgic Encephalomyelitis: The Devil Is in the Details, stresses this, drawing on the International Consensus Criteria (ICC) and the International Consensus Primer for Medical Practitioners (ICPrimer) as definitions. The book opens with an epigraph from Dr Ola Didrik Saugstad (Professor of Paediatrics and WHO Advisor, Norway):

“The treatment of today’s M.E. patients is comparable to that of lobotomy patients decades ago. When the full history of M.E. is written one day, we will all be ashamed of ourselves.”

M.E.: More Than Fatigue

Its first chapter sets the tone for everything that follows: M.E. is a disease that is at once neurological, immunological and autonomic. Boutilier distils this into the very apt concept (entirely reflecting what is enshrined in the ICC): M.E. is a failure of communication between the brain and the heart, with a malfunctioning autonomic nervous system as the broken link.

The Brain–Heart Connection

On the brain side, the regions that govern energy, pain, sensory processing, blood pressure, heart rate, temperature, sleep and immune activity begin to send distorted, delayed or unstable signals. It is vital to recognise that this is physiological rather than psychological, rooted in inflammation, reduced blood flow and autonomic dysregulation. It frequently produces sensory overload, brain fog, balance issues, disturbed sleep, temperature instability and post-exertional neuroimmune exhaustion (PENE).

On the cardiovascular side, Boutilier points to research evidencing reduced blood volume and stroke volume, impaired oxygen delivery, labile blood pressure, abnormal heart rate responses and orthostatic intolerance ranging from near-POTS to full POTS. The cardiac control system and blood supply are faulty, giving rise to dizziness, palpitations, breathlessness, weakness, faintness and post-activity crashes.

The Role of the Autonomic Nervous System

The autonomic nervous system, which ought to coordinate the two, becomes unstable. The sympathetic “fight or flight” response is overactive, the parasympathetic “rest and repair” state underactive, and switching between them is impaired, so blood vessels fail to constrict properly and heart rate becomes erratic. Hence, intolerance of standing, sudden tachycardia, fainting in the shower and collapse after minor exertion are all characteristic of autonomic failure.

Why This Understanding Matters

Because this brain–heart–autonomic loop cannot raise blood flow, oxygen delivery or metabolism on demand, even small tasks can trigger a full-system crash. This, as Boutilier describes, is why patients cannot stand for long, recover slowly, need pacing and worsen when pushed, and why understanding M.E. in these terms moves it decisively out of the “fatigue” misconception and back into its proper medical context.

The timeliness of this reframing could hardly be clearer. In a powerful new column for The Guardian, George Monbiot describes the neglect of people with M.E. as a hidden social crisis and makes the case for a public inquiry: Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed (24 September 2026).

Myalgic Encephalomyelitis: The Devil Is in the Details is available in paperback, hardback and as an eBook: https://www.facebook.com/groups/1063785371126868/posts/2251336175705109/

Please also refer to the AONM webinars with Professor Kai Schulze-Forster, Professor Klaus Wirth and Patrick Ussher (https://www.youtube.com/watch?v=r2x5uzBIIFY&t=207s) and to the review of Myalgic Encephalomyelitis: The Devil Is in the Details in AONM’s August newsletter: https://aonm.b-cdn.net/wp-content/uploads/2026/08/AONM-Newsletter-August-2026.pdf