The most helpful books for ME/CFS & Long Covid patients

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.

A must-have in the ME/CFS patient’s book armoury.

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.

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. 

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.

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.