I am myself an ME/CFS patient. While my background is not in science or medicine, I have turned my prior academic skills in philosophy to reading and studying the research into ME/CFS. I am now passionate about sharing my learnings with other patients, whether on my YouTube channel, in my book, or in talks to patient groups. In my advocacy work, I am also in regular contact and collaborate with Professor Klaus Wirth – one of the German researchers responsible for the recent breakthrough work into ME/CFS and whose work could ultimately lead to the first approved pill for ME/CFS and Long Covid.
I love being challenged in how I think about ME/CFS, and Dr Perrin, in coming at the illness from such an unusual angle, does just that.
For Perrin, spinal rigidity and obstructed lymphatic flow are key components of the illness. My first reaction to such claims: what can these things possibly have to do with an illness of exercise intolerance and post-exertional malaise?
Well, as I found from this lucid and engaging book, much more than you might think. The deal was sealed when an osteopath I visited confirmed that I also had all the problems Dr Perrin has noted in the spines of his ME/CFS patients.
Are you suffering from CFS/ME and/or fibromyalgia? Are you caring for someone with these conditions? Is someone close to you a sufferer? Almost certainly it will have taken your doctor some time to arrive at the diagnosis of CFS/ME and once there you may have been offered little more than 'graded exercise' and antidepressants to help with the condition. In the interim you may have tried many alternative approaches including changes in diet and lifestyle and a complex cocktail of dietary supplements. These may have helped but if the root cause is poor/blocked lymphatic drainage from the brain and this…
Neuroplasticity (aka "brain retraining") is such a controversial topic in the ME/CFS and Long Covid world, and I am personally strongly against any suggestion that these illnesses are "only" the result of a hypersensitive nervous system.
However, I do also think that a maladaptive neuroplastic state is one part of these conditions and that neuroplasticity can help.
While I find Hopper’s book short on instructions, I regard it as highly valuable because of its multiple testimonials of recovery from using brain retraining. I think that these offer fascinating accounts of the potential utility of neuroplasticity for ME/CFS and related illnesses, and I would encourage anyone to read them with an open – though discerning – mind.
Annie Hopper had exhausted the medical system and was still suffering from disabling symptoms of multiple chemical sensitivities, fibromyalgia and electric hypersensitivity syndrome. Hopper deduced that a toxic trauma had over activated threat and protective mechanisms in her brain that were keeping her body stuck in a cycle of chronic illness and inflammation. In her search for healing, she masterfully created a system that would remap her brain, end her suffering and restore normal health. Wired for Healing sheds light on how trauma causes the brain to disorganize neural circuits and shares triumphant stories of recovery of people who have…
Gifts from a Challenging Childhood
by
Jan Bergstrom,
Learn to understand and work with your childhood wounds. Do you feel like old wounds or trauma from your childhood keep showing up today? Do you sometimes feel overwhelmed with what to do about it and where to start? If so, this book will help you travel down a path…
In all the ME/CFS world, I find the story of Whitney Dafoe and his father, Prof Ron Davis, to be the most emblematic.
For those who don’t know, Whitney is completely bedridden with severe ME/CFS, and his father, a renowned geneticist at Stanford, pivoted his entire research efforts to find a cure for his son.
I am deeply moved by the sheer tenacity and persistence of both father and son – the one in facing the brutal realities of the most devastating form of the disease – and the other in his unwavering commitment to advancing the research into it, not just for his son but for us all.
I found this to be a gripping read, an inspiring instance of the intersection of science, patient experience, courage, and love.
“A renowned geneticist races against time to diagnose a malady that landed at his door... A complex, well-related story of medical detective work.” --KIRKUS
At the age of twenty-seven, Whitney Dafoe was forced to give up his life as a photographer who traveled the world. Bit by bit a mysterious illness stole away the pieces of his life: First, it took the strength of his legs, then his voice, and his ability to eat. Finally, even the sound of a footstep in his room became unbearable. The Puzzle Solver follows several years in which he desperately sought answers from specialist…
Although ME/CFS and Long Covid are essentially the same, I wanted to include here a book primarily focused on Long Covid, and this is arguably the most reputable such book.
I found this to be a highly trustworthy read, replete with a range of treatments known to help Long Covid patients. I also really appreciated its accessible style, given the cognitive issues that patients usually have.
Sometimes we just need clear overviews and a menu of treatment options to try in order to move forward, and this, the most practical book on my list, fits that bill very well.
Reports suggest that over 100m people around the world are living with Long Covid (more than 1.5m in the UK) yet reliable, clear information and guidance remains scarce. This book is the definitive guide to understanding, managing and treating the condition.
Written by the world's leading immunologist Professor Danny Altmann and expert patient Gez Medinger, The Long Covid Handbook translates cutting-edge science, patient-led research and practical guidance with clarity. This book will equip you with expert information and advice on:
- Long Covid's 200 symptoms, which include fatigue, brain fog, breathlessness and more -…
Gifts from a Challenging Childhood
by
Jan Bergstrom,
Learn to understand and work with your childhood wounds. Do you feel like old wounds or trauma from your childhood keep showing up today? Do you sometimes feel overwhelmed with what to do about it and where to start? If so, this book will help you travel down a path…
Finally, I wanted to throw in a bit of a wildcard in the form of a book which details an as yet underused treatment, but one which could become an established option for patients with these illnesses.
In reading this, I was intrigued by Dr Propokov’s account of "intermittent hypoxic hyperoxic therapy" (IHHT), a treatment which – get this! – tricks the body into thinking it is at high altitude, along with all the benefits that entails (increased red blood cells, etc).
Given that ME/CFS is characterised by poor systemic oxygen extraction, I was really interested to learn of a therapy that can improve bodily oxygenation capacity at baseline, all the more so when paired with Dr Propokov’s accounts of healing among his chronic Lyme patients, an illness with myriad similarities to ME/CFS.
Could this become a widespread treatment for ME/CFS in the future? Having read this book, I wouldn’t bet against it.
Why on earth a biogerontologist, mitochondrial researcher and diving physician writes a book on Lyme-borreliosis? He hopes to educate and motivate readers for a proactive position regarding their health. The author uses described method for prevention, treatment and recovery of many health problems - for himself, his family and for his patients and clients with remarkable results for more than 30 years. The underlying scientific explanations elucidate in a simple, but detailed form, why his method works against Lyme disease and co-infections. This book doesn't force one to blind obedience to its recommendations; it encourages readers to build up their…
My book seeks to explain breakthrough research into ME/CFS and Long Covid. For so long, these illnesses have been described as "mysterious" or worse, as "all in the head" of the patient. However, recent research from Germany has completely transformed our understanding of these illnesses, instead providing us with a "unifying model" of them, a map that can make sense of the connections between all pre-existing research findings and show us how these are actually illnesses of many interlinking vicious cycles.
My book seeks to explain this research for other patients as well as research into a range of treatments. I also talk about all of the healing strategies that I have used to improve my own quality of life as an ME/CFS patient.
