An important contribution to understanding ME/CFS

In her Science as Salvation: A Modern Myth and its Meaning (1992, page 9), philosopher Mary Midgley reflects on the widening gap between professional science and everyday thinking, observing: “Teleology – reasoning from purpose – is… a much more pervasive, much less dispensable element in human thought than has usually been noticed.” And in Understanding ME’s introduction, Patrick Ussher states that “medical knowledge is not just about understanding; it has a purpose and that purpose is to heal”. Here, refreshingly, is another classicist and philosopher reminding the science-struck that science cannot be isolated artificially from the rest of our mental lives and that its findings must not only reach the relative few who produce it, but enrich the understanding of the public whose taxes largely fund it.

It’s conceivable, I suggest, that Ussher’s skilful insertion of an evidence-based approach to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) into a context that acknowledges a place for the creative impulse in service of the humanities – to which science contributes – could herald a sea change in how ME is researched, managed, treated… and, just possibly, cured.

Ussher has had ME for over seven years, and he describes how, in his quest to discover what was making him so ill, he read widely, acquiring knowledge of many biomedical aspects of the disease. August 2021 proved pivotal when he encountered peer-reviewed papers of German researchers, Profs Klaus Wirth and Carmen Scheibenbogen, and began “making my own ‘in plain English’ notes of their arguments”. Further study led him to develop a “mental map” of the illness, and “from the brain to the vascular system to the skeletal muscles, endocrine and immune systems, heart…”. Wirth and Scheibenbogen indicated “how all of these seemingly separate patho-mechanisms within the illness were actually just part of one big vicious cycle”.

Comprising 433 pages with a bibliography of 160 references, the book opens with a foreword from Prof Wirth who summarises the biochemistry behind his proposed therapeutic concept, a tablet form of which “could actually target the core mechanisms of ME/CFS…” with a mode of action that “stimulates the sodium pump and the mitochondrial sodium-calcium-exchanger and moderately improves cerebral and skeletal muscle blood flow”. And Ussher makes clear that when he uses the terms ME/CFS, “I also automatically include in this ‘post-Covid’ ME/CFS, which is considered the most severe form of ‘long Covid’.”

The introduction includes the background to the author’s experience of ME and Ussher briskly disposes of the ‘it’s all in the mind’ mantra that has blighted research in the area, noting that “supporters of the psychological dogma surrounding its causation remain stubbornly resistant, even in the face of compelling scientific evidence to the contrary”. He quotes Manchester-based respiratory consultant Dr Asad Khan who asks, “How is it that so many doctors think that everyone with ME/CFS and long Covid – all the millions of them around the world – are all simultaneously engaging in a hypochondriacal pact?”

One of the book’s aims is to explain ME research in an accessible way, and while acknowledging and citing diverse peer-reviewed studies, Ussher emphasises the work of Wirth and Scheibenbogen, whom he credits with “joining up the dots” of others’ research to reveal “the bigger picture”.

The book is in four parts, and, importantly, concise chapter summaries in plain English are useful means of further helping those readers whose grasp of some physiological and biochemical concepts might not be optimal. Part One: ‘The Research of Wirth & Scheibenbogen’, comprises three chapters each considering ‘ME as An Illness of Global Hypoperfusion’, ‘An Illness of Cellular Dysfunction’, and ‘An Illness of (Functional) Autoimmunity’, respectively. Part Two: ‘Further Key ME/CFS Mechanisms of Hypoperfusion & Exercise Intolerance’, spans three chapters; Part Three: ‘Other ME/CFS Symptoms’, occupies five chapters; and the final two chapters and conclusion of Part Four consider ‘Understanding ME/CFS & Hope for a Different Future’.

Looking to the future, Ussher’s reflections on the therapeutic possibilities offered by a medication – Mitodicure – that has arisen from Wirth et al’s unifying model of ME are measured, yet freighted with cautious optimism that the protean pathological strands contributing to ME are beginning to be disentangled. Mitodicure is currently under development and its pharmacological strategy aims to address the wayward biochemical mechanisms that are associated with exertional intolerance and post-exertional malaise, both of which are attributed to an energy deficit caused by ionic disturbances, mitochondrial dysfunction, and hypoperfusion.

Meanwhile, as the book’s title states, Ussher offers a range of practical suggestions and strategies that might contribute to healing, providing valuable insights based not only on his personal experience, but also on a careful sifting of the available peer-reviewed evidence. While primarily intended as a guide and handbook for those with ME and long Covid, Understanding ME offers one patient’s view through the long grass which has grown around an illness badly served by medical dogmatists, and it is a view which readers have much to learn from. Ussher is the first to note that he began his ME journey as a layman. But with science growing ever narrower and more specialised, he shows the importance of the humanities and creative thought in establishing coherent conceptual maps from diverse scientific pathways.