A sufferer’s insight into the mystery of chronic fatigue syndrome
The problem with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is threefold: we do not know what causes it; we do not know what it is; and we do not know how to cure it
Add to that the fact that many in the medical profession and among the public dismiss the condition as being purely psychogenic in nature, as described by Sophie Palmer in these pages.
In other words that there is nothing physically wrong with the person claiming to have ME/CFS, and that people suffering from it are often dismissed as idlers or nutters.
As if to compound the woes and suffering of those with ME/CFS, the condition has been eclipsed in recent years by the dubious condition known as ‘long covid’, around which there seems to be (alegedly – Ed) little doubt regarding its existence.
Moreover, such is the allure of long covid and the efforts to keep it and its purported cause in the public eye that the amount of money invested in research into long covid is an order of magnitude greater than the amount of money invested in research into ME/CFS.
According to the NHS Conditions overview, ME/CFS is: ‘a long-term condition that can affect different parts of the body. The most common symptom is extreme tiredness.’
The specific problems include feeling tired all the time; sleep problems; problems with thinking; and symptoms getting worse after physical or mental activity. Widespread pain and flu-like symptoms can also feature.
Researchers into ME/CFS tend to focus on only one aspect of the condition; therapists likewise. Therefore these ‘experts’ may not necessarily be the best people to speak about ME/CFS or for those who suffer from it.
The real experts are those who have ME/CFS and what is needed is books written by them: Understanding ME/CFS & Strategies for Healing by Patrick Ussher is such a book.
Ussher has suffered from ME/CFS for seven years. He is a writer and musician, but anyone reading his book could be forgiven for thinking that he had a background in cell science.
He is at pains to indicate that he has no such training, but with Professor Klaus Wirth, who contributes a foreword the book, Ussher has a remarkable grasp of the scientific principles which may underlie his condition.
There are of course other books, many in the ‘self-help’ mode, on ME/CFS, and it is probably a result of the condition being largely ignored by the medical and pharmacological communities that such texts emerge.
However, Ussher’s book is no self-help manual. It contains no advice, though the author does describe some methods, such as the Buteyko breathing techniques he uses and his meditation practices.
But he does so undogmatically and writes with moderation about all aspects of the condition.
The fact that ME/CFS is so poorly understood and that no cure is available means that those peddling quick cures and quackery have a field day. Emanating from those same reasons, sufferers from ME/CFS are often labelled as being mentally ill or simply as shirkers.
I have known mercifully few people with ME/CFS but they all had one thing in common: they were all highly motivated and hard-working. In the same vein, Patrick Ussher is a very gifted and humorous person.
Under a nom de plume (for reasons I can understand) he wrote one of the wittiest accounts of the so-called covid ‘pandemic’. He is also prolific on YouTube.
At 433 pages, Understanding ME/CFS & Strategies for Healing is a substantial volume. While it contains the author’s own reflections on ME/CFS it also summarises the science as far as it has taken us and, as such, it probably summarises the field of ME/CFS research better than any similar text.
With a first degree and a PhD in biochemistry, I was keen to find out if there were any purported mechanisms at the cellular level which could account for the main symptoms of ME/CFS. It turns out there are.
Chapters 1, 2 and 3, comprising part one of the book, are the most explanatory.
Chapter 1 considers ME/CFS as an illness of global hypoperfusion (a state of reduced blood flow throughout the body). Here the defining symptom of ME/CFS, viz persistent fatigue and low tolerance to exercise, is probably related to the receptors (beta-2) which respond to adrenaline.
These do not function properly meaning that adrenaline and other substances which act on those receptors cannot exert their effect on the cardiovascular system. While the overall effects are more complex, put simply, it becomes hard to maintain appropriate vascular activity to ensure blood reaches all the organs of the body.
Those organs include the muscles of movement (skeletal muscles) and the brain.
Chapter 2 considers ME/CFS as an illness of cellular dysfunction. Central to this mechanism is a dysfunction of the ubiquitous sodium-potassium pump which all cells need to survive by ensuring that sodium ions are pumped out of cells at a greater rate than potassium ions are pumped in.
The concentration gradient of these ions across cell membranes is vital for their function and requires energy in the form of a molecule called ATP, which is produced by cellular organelles called mitochondria.
To envisage how energy-dependent this process is, consider the resting metabolic rate at which approximately 1,000 kilocalories is consumed. That energy is being used to maintain the sodium-potassium pumps of the cells of the body.
The low blood delivery to tissues could well account for the sodium-potassium pump dysfunction, and the sequelae of that dysfunction, including a state of very low energy production in the body, could well contribute to the symptoms of ME/CFS.
Chapter 3 considers ME/CFS as an illness of (functional) autoimmunity whereby the body of a person with ME/CFS is producing antibodies to the beta-one (and -two and other receptors involved in the regulation of blood pressure) thus in effect deactivating them. This observation could easily account for the observations described in Chapter 1 on global hypoperfusion.
As to what causes ME/CFS, this is best explained by Ussher as follows: ‘Regarding what comes before ME/CFS, it can be any significant stressor (broadly understood) or a combination. Most typically it is a virus, but it could be a vaccine, a different illness or emotional stress/trauma.’
There are possibly several causes, or ‘triggers’ as Ussher refers to them. It is highly likely that there is something different at the cellular levels of people suffering from ME/CFS which, in a sense, is waiting to be triggered.
Not everyone with a viral infection or trauma subsequently suffers.
Naturally, having identified putative causes and corollaries of ME/CFS, the search for a cure is under way. At the moment, there are many treatments which mainly address the symptoms and pathological outcomes of ME/CFS and these include blood washing (apheresis) and hyperbaric oxygen.
Patrick has tried them all and describes them in detail (some may need to sit down while reading these sections). But, as for a cure, one active ME/CFS researcher, Klaus Wirth, has identified a substance labelled Mitodocure® which acts on the malfunctioning sodium-potassium pump.
It may hold the answer to ME/CFS but, as Ussher acknowledges, it may not. We will not know until it is properly tested and, at the time of writing, it has not yet entered phase 1 clinical trials.
ME/CFS remains as much a riddle as it is a reality for those who live with it. Between the competing hypotheses, contested treatments, and the often unhelpful chatter of self-appointed experts, what is most striking is the persistence and resilience of patients themselves.
Science may eventually untangle the web of immunology, virology and neurology that surrounds the condition.
But until then the experience of sufferers should command respect rather than dismissal.
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solarsmurph
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Typical Western Medical Mafia, keep trying to hang a name/diagnosis to a medical condition, and then trying to find a ‘cure’ with pharmaceuticals. I have had several doctors (Western Medical doctors) that tried to label my ‘condition’ as chronic fatigue , adrenal fatigue, blood flow, lymph flow, and host of other names, to what has been increasingly ails me, and no treatment has been of much use, and tests all come back as non-conclusive.
I recently read a book: The Age of Diagnosis: How Our Obsession with Medical Labels Is Making Us Sicker – Suzanne O’Sullivan, which seems to make some sense to me.
I am coming to the conclusion that Stress, low levels of trace elements such as iodine, sulfur, potassium, magnesium, sunshine, and reduced physical activity are cumulative to the issues, along with environmental toxins and poisons in our foods.
Doctors are supposed to be teachers, and you are responsible for your health, not them.
Take a look at the Person in the Mirror, and stop thinking our governments, corporate so-called health experts have anything other than profits for share holders as their prime directive.
A 10 minute visit, tests, another 10 minute visit for diagnosis, and try some pills, without even actually looking at you has become a failed system.
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