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A significant part of my training was at the Royal Free hospital, shortly after chronic fatigue syndrome or as it was known then ME, was identified. It seemed to emerge in a group of nurses who may have had infections. As it seemed to be at that time, population based, there was consideration that it might have had a psychological or even mass hysteria component to its mechanism. At least we now know that this view of chronic fatigue was and is mistaken.
When I went to the National Hospital for Neurology and Neurosurgery, many of the senior consultants used to call this condition the syndrome of muscle pain and fatigue, which to some extent I still perceive is a better name for the condition which seems to encompass not just chronic fatigue, but also fibromyalgia. The two conditions are often linked or associated in some way. One of the problems for people with these disorders is that there are no tests that confirm or deny the specific diagnosis. This means that there is going to be a lot of overlap between a number of disorders. I personally, do not understand why this gives so much difficulty in many areas of medical care and health philosophy as I will explain.
96% of the whole world population, will suffer with headache at some stage in their life. Over the years, most of these people have been regarded as having tension headache, but between 10 and 20% will have migraine with or without the neurological associated features of aura. Many headache specialists now in fact perceive that much of what is known as tension type headache is in fact migraine.
People with migraine can spend literally days in bed vomiting, hardly able to open their eyes, and not able to engage with the world in any meaningful way. When these people are fully investigated, nothing is actually found, so there are no diagnostic tests. The diagnosis is made on the history.
No one would suggest that migraine is histrionic or a psychologically mediated disorder. It is now known that the so-called trigeminocervical neurovascular pathway gets activated within the brain stem. The cervical component gives neck pain with headache and likewise people with neck pain often get headache. What is also apparent is that almost anything can make migraine headaches worse. This includes not just other physical conditions or health issues, but also the psychological and emotional state. The biopsychosocial model of Engel helps explain and that concept is discussed elsewhere on the website.
I have been reading a great deal of comment from people who do suffer with chronic fatigue syndrome as to how they have been considered over the years compared to those who are now complaining of symptoms following COVID infections. The Post-COVID syndrome or as it is more emotionally and efficiently called “Long-COVID” is gaining greater resonance and politicians are being not just asked but told that they have to put in place special clinics all over the country to cope with these people. It is not surprising that those who have had the chronic fatigue syndrome or what was regarded as ME, feel quite sore at how much energy and effort is going into this thinking, whereas they have found themselves literally either ignored, disregarded or disbelieved with regard to their symptom load. I actually have some considerable sympathy with their negative reflection on this comparison.
There will be no tests that indicate that an individual has Long-COVID. They may or may not have antibodies and what if they do, that does not necessarily prove that they have the disorder.
What is apparent is that some people with the COVID infection will have had unpleasant life experiences in an ITU or HDU in order o get better and many people who come off of intensive care units do suffer prolonged symptoms for a lot of different reasons. Some of which intriguingly are referred to as a Post-Traumatic Stress Disorder (PTSD). It seems that women, generally ill people, and those with numerous pre-existing symptoms will more likely get Long-COVID.
It is not helpful to look back on how anyone with chronic fatigue or ME has been treated or managed in the past. What is more important is to consider what can be done to piggyback on to the societal interest in COVID and the aftermath. There may be every reason to feel bitter and neglected, but that is not going to help recovery into the future. The key is to petition those who are going to establish clinics and to inform scientists, politicians, and doctors that this is a real phenomenon and in the same way that Long-COVID is a challenge, it is in effect the same challenge as chronic fatigue syndrome or fibromyalgia. It is in simple terms the brain getting it wrong. When the muscles hurt and get fatigued, the outcome of that is a change in the way that the brain appreciates the physical capability of the body. This is a negative feedback situation so that the less an individual does the less they do and the more that they decondition the worse they get.
There are no easy answers with regard to the management, but the identification of the problem with insight and understanding always goes a long way with the therapeutic process.
Elsewhere on this site, there is a discussion about the four modalities of medical treatment as there is no surgical option. These always have been and will be into the future physical treatments, injections treatments, talking therapies, and pharmacological treatment. Finding what works for each individual the art rather than the scientific process. Making sure that any suffering individual finds themselves under the wing of a sympathetic and understanding physician, who can help move them forward over a prolonged period of time without question the most beneficial way to move forward. A supportive and understanding and family and friends also contributes to the recovery process.