As an ME patient, I have long admired and have been profoundly grateful for Julie’s science journalism, (published in the Washington Post, New York Times, Oprah Magazines as well as academic science journals), exposing the flaws of the notorious PACE trial, which falsely claimed recovery for ME patients by Graded Exercise Therapy and Cognitive Behavioural Therapy.
Through the Shadowlands is a fascinating memoir, with a compelling story, nuggets of wisdom, and a thorough survey of the scientific research around ME and mould- based illnesses. It is a science-writer’s personal story of contracting ME – (myalgic encephalomyelitis, labelled as Chronic Fatigue Syndrome in the US), and how she made a good, though not full, recovery via extreme mould avoidance and psychological ‘brain retraining’. It also covers her troubled upbringing and how her chronic illness impacts on her relationships. (It’s written intelligently but informally, which makes for plenty of swearing, for those who find swearing difficult.)
Rehmeyer approaches her chronic illness with enviable resilience. As a scientist she resolved to view her disease with ‘curiosity’, rather than fear; as a highly-intuitive person, she also approaches her limitations with a non-religious loosely-theistic spirituality.
For the first ten chapters, where she describes her descent into ever-worsening ME, and simultaneously tells of the highly politicised history of the illness, I wanted to give her a standing ovation. It is so difficult to explain the complexities of the history of the illness: the mysterious outbreaks, including the controversial one in Lake Tahoe, the role of psychiatrists who denied it (and continue to deny it), right up to the present day – and Rehmeyer nails it. If you ever want a resource to explain, without hysteria or hyperbole, just how poor the science used in the PACE trial was, and how damaging the role of psychiatrists has been, that chapter is absolutely brilliant. I don’t know that I can think of a better accessible scientific writer for all things ME than Julie Rehmeyer: her analysis is spot on and, like the pure mathematician she is, she has an uncanny ability to simplify even very complex concepts.
The book is already doing well, and has the chance to break into the mainstream, raising much-needed awareness of ME. But is it a good book for long-term ME patients like me, who have tried All The Things, and have been wearied by so much disbelief of our illness and people pushing miracle cures? My answer is yes, but with some caveats. If someone reads it carelessly, looking either for a miracle cure, or a reason to think ME is a psychosomatic illness caused by childhood trauma, they might find ammunition here: some of the mould avoidance and consulting-with-a-psychic episodes initially sound, as Rehmeyer herself admits, ‘whacko’. There was one part I found triggering, and almost wanted to stop reading – and for those still feeling raw from the trauma of having their neurological illness shunted into the psychiatric sphere, this may be too hard to read right now.
But I’m glad I read to the end, because if you absorb her thoughtful commentary throughout, she explains clearly that her story should not be seen as the single narrative of the ME experience. Although mould avoidance and psychiatric techniques have been significant for her, she puts both theories in scientific context, openly acknowledging the weaknesses as well as the strengths in any theory, and making clear that there are plenty of other ME patients who have open-mindedly tried these therapies without success. (Her epilogue is important for this.)
Because ME is so controversial, the loudest voices are the least sophisticated: the cynical psychiatrists who refuse to acknowledge the existence of ME as an organic illness versus those who shout from the rooftops that they have found the miracle cure to ME. But Rehmeyer is neither of these.
What makes this book outstanding is Rehmeyer’s ability to evaluate ‘out there’ therapies with cold hard facts and analysis. Everything – every story she tells, every cure she tries, every conversation she has about the science of ME – is then evaluated dispassionately, in the light of extensive research, with clear and beautiful logic, admitting the strengths and the weakness. She values truth and accuracy over persuading people of a therapy to try. It is rare to find a person who approaches the scientific unknown with both an open, curious mind, and a healthy scepticism and a shrewd scientific eye: in Rehmeyer both of these are combined and balanced.
Rehmeyer’s passion for and spiritual connection with the natural world shines through – you can see the mountains, feel the rocks. I will take with me her strength and wisdom in partnering with your body, her clear analysis of the political history of ME and the fascinating scientific studies into mould and illness. I found the experience of reading her book much like the walks in the wilderness she so loves taking: a bracing, challenging and thrilling exploration, with a clear and beautiful outlook.
*I received a copy from the author, with an invitation for an honest review, which this is.*
[Because new books on ME are so rare in the mainstream, this one was an important book to review thoroughly on its own. Look out this week for my shorter reviews of the ten books I read in May/June. And if you’re new here, stroll around for more articles on ME, and connecting with God when you have a chronic illness, and don’t forget to claim your free book, which interweaves my story of ME with the biblical book of Ruth: Coming Back to God When You Feel Empty.]
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