The Management of the Chronic Fatigue Syndrome, Fybromyalgia, Functional Neurological Disorders, Medically Unexplained Symptoms and Long Covid

 

I spent many years at the Royal Free hospital working in renal medicine and neurology. I undertook a doctorate under the supervision of Professor P K Thomas, who was one of the early observers of what initially was called the Royal Free disease and then became myalgic encephalomyelitis (ME) and now more usually referred to as the chronic fatigue syndrome.

 

I have had a career long interest in the philosophy of healthcare and the mechanism by which symptoms are generated. If an individual complains of a problem that is a symptom, whatever it is, then there is an assumption that they are not making it up, that is an elaboration to convince or deceive (malingering). If that is the case, then quite simply there has to be a mechanism by which the symptom is causing impairment. Looking back, it is remarkable how little time was spent in medical school and in post-graduate studies considering this crucial part of medical understanding. The symptom of headache, for instance, would have been regarded as just that without any thought as to where the headache was originating or why. Given the headache is the commonest symptom in the world with something like 96% of all people suffering at some stage in their life it is not surprising that even less thought was given to the chronic fatigue syndrome, or the other conditions as listed above.

A symptom is an entity that any individual notices and will complain about. There are a few symptoms such as the awareness of pleasant aromas that may not necessarily be unpleasant or generate complaint, but they do still represent a symptom. Most symptoms however do represent something that is either unpleasant, frightening, interfering with normal life causing impairment or they may generate anxiety or sleep disturbance. Chronic symptoms of any kind usually produce a more profound psychological response such as depression whereas as acute symptoms tend to be more associated with anxiety. There is no difficulty identifying that pain is unpleasant though intriguingly there are a tiny number of people who actually seem to get pleasure out of pain. For the purposes of this discussion such masochists will be ignored as will sociopaths and psychopaths. The vast majority of people do not want pain and if they have it, they wish to get rid of it.

 

What links chronic fatigue syndrome, fibromyalgia, functional neurological disorders, and medically unexplained syndromes is the fact that in all these conditions the symptoms are unpleasant but there are no actual tests that help confirm the diagnosis, it is a matter of a formal history being taken and then placing that history into the appropriate diagnostic category. With some of the conditions physical findings do not form what is known as an organic pattern and that enables the concept of a functional neurological disorder, or it has also been called a dissociative state to be confirmed as a positive phenomenon rather than by exclusion.

 

The only way that an individual can record the fact that there is an unpleasant sensation such as pain is by the recognition and representation of that pain within the brain. There is considerable evidence to support that statement but more important is the recognition that there are a small number of people who have a genetic state whereby the brain is not able to appreciate pain. This condition is called “a genetic indifference to pain syndrome”. This would appear to represent a disorder of brain wiring, pain receptor integrity and neurophysiological and neuropharmacological transmission that stops the pain being appreciated. The trauma, disease process or physiological experience such as period pain or childbirth are still present. These conditions will in the vast majority of people generate pain. Those who do not have this ability to feel pain are in fact in considerable danger as they are less able or unable to respond to a painful stimulus that would lead to taking appropriate action.

 

When an individual has pain or an unpleasant sensation, the brain recognises this phenomenon and a number of different parts of the brain are activated. Quite simply the pain is in the brain. Every brain has more than sixty billion neurons many of which have up to 10,000 connections. When a pain pathway is activated this in turn triggers areas of activation across numbers of different parts of the brain. From a philosophical perspective this is common sense. If a child puts their hand into a fire, this will generate an immediate withdrawal response, that is an activation of the motor systems. The memory circuits will record the fact that such an interaction really ought to be avoided in the future and the front parts of the brain responsible for behaviour will also note that this particular action is hazardous. I do not think that it can be overstated that it is the brain that represents the organ by which pain is appreciated as the unpleasant or nociceptive symptom and all that follows is the function of normal brain activity. There are situations where the brain identifies pain without there necessarily being a cause. There may have been an initial trigger, but for some reason again probably genetic the brain will continue identifying that there is pain where there really should not be, and this then becomes chronic pain and is being regarded now as a state of central sensitisation or a chronic pain syndrome.

 

If the term pain is extrapolated into what is known as a functional neurological disorder, chronic fatigue syndrome, fibromyalgia or possibly even Long COVID as well as medically unexplained symptoms then identical thinking applies. There is either a cause of each of these problems or it will arise spontaneously. For instance, the chronic fatigue syndrome in which it is known that many such individuals would have the fatigue arise after an infective illness. Functional neurological disorders may arise because of intense emotional crises from the past or more recent trauma. Medically unexplained symptoms are similarly precipitated but not always. All of these conditions have symptoms that individuals would rather not have and if they could, they would get rid of them. On this basis what is being described is a variation of pain.

Over the years I have assessed, investigated, diagnosed and attempted to manage large numbers of people with chronic fatigue syndrome. In order to make that diagnosis tests must not have revealed any underlying structural or proved physiological, biological, or immunological cause. By definition, the chronic fatigue syndrome should only be diagnosed if there is no other disease process. Regrettably, over the years there has been a lot of discussion including the written word that has done little to advance the cause of those who have this woefully debilitating disorder and there are a number of these. First and foremost is that with all of the disorders above no tests reveal an abnormality.  Equally important is the nomenclature whereby chronic fatigue syndrome had originally been called ME or myalgic encephalomyelitis. As already identified this condition has got nothing to do with muscle or spinal cord (myelitis) and so the old-fashioned term ME has truly no place within this syndrome identification. By seemingly removing structures from the diagnosis of a symptom, people with chronic fatigue syndrome have got the impression that doctors were undermining the organicity of the disorder. It also did not help that for many years for reasons that are difficult to understand, doctors concluded that this condition was based on the psychological state. This led to a great deal of negativity between the support groups for chronic fatigue syndrome and parts of the medical profession. Personally, I regard this thinking by the medical profession as akin to the flat earth society which these days is again a philosophical concept. What I mean by that is that if you perceive that the earth is flat then all else that follows is correct. If it is the original primary principle that is wrong and hence all that follows is incorrect. If it is perceived that chronic fatigue syndrome, fibromyalgia, functional neurological disorders, medically unexplained symptoms and Long COVID are all psychological states then all that follows must be wrong. This does not mean that psychological treatments have no role in the management of these conditions in the same way as they may benefit any chronic pain or chronic headache disorder. This is discussed later in the management section of this article. Anyone with a chronic set of symptoms will have psychological components as there would be for any significant disease process. On this basis psychological treatments do have a role even with people who have sinister disease.

Just like the chronic fatigue syndrome, individuals who have functional neurological syndromes have found themselves compromised over the years by the nomenclature. A whole range of diagnoses have been attached to this disorder. In the past the condition was known as hysteria, hysterical conversion disorder, then a conversion disorder and then more recently dissociative disorders and then functional neurological disorders or FND. People can also get funny turns that may look like epileptic seizures or involuntary movements. These in the past were defined by what they were not as opposed to what they were. For instance, individuals that had attacks that were found by appropriate tests to not represent a diagnosis of epilepsy or labelled as having non-epileptic attacks or non-organic state. These terms have now been confined to the historical dustbin (or should be). There was a considerable literature on the internet about all of these functional neurological disorders. They do fall in the grey zone between neurology and psychiatry, but it is neurologists such as the group in Edinburgh and also at St George’s hospital who have written so much about these conditions. The main website giving the most useful information is www.neurosymptoms.org .

I personally do not like this concept, but it is frequently used an if anything is gaining greater prominence. There are often overlaps with what are now known as syndromes without a name (SWAN) which is not an unreasonable consideration. It is estimated that up to 40% of people presenting to neurology clinics will have symptoms that just cannot be explained by investigation or simple analysis. For instance, people present with either unilateral or four limb sensory symptoms. They may have a perceived bladder dysfunction when no abnormality can be found. Often in these people there is not an obvious psychological or emotional challenge that would have helped explain the symptoms in the past. It is because of this that the diagnostic category of medically unexplained symptom has emerged. I do have a particular view about such symptoms. Considering the diagnosis of migraine and how migraine attacks are generated is apparent now that any neurologist would have called migraine a medically unexplained symptom. Migraine is an actual diagnosis recognised by the International Classification of Headaches Disorders. Migraine may represent a severe pain in the head with associated neurological features. Those neurological symptoms represent what is called an aura. It is said that 10% of men and up to 20% of women will suffer with migraine. Probably the figure is much higher than this. If any of these individuals are investigated by clinical tests nothing abnormal will be found in anyone who has primary migraine with or without aura. What we now know about migraine is that the trigeminocervical neurovascular pathway in the brain stem fires off for whatever reason. There may be a genetic predisposition. When this pathway fires it causes migraine or even other headache syndromes. If such a local pathway can generate such misery for so many then it would seem fairly straightforward to reflect that other pathways in such a complex structure as the brain could fire off inappropriately and generate whatever symptoms are then identified as being medically unexplained. This thinking is not just academic as it opens the door to treatment as will be discussed below.

The world has been devastated by the COVID-19 pandemic. Tens of millions of people have been infected by this coronavirus and many millions have died. It is likely that the true figure will never be known as there has been so much under-reporting throughout the world for many reasons often political. What is apparent regrettably is that amongst those who recover, a number will have enduring symptoms. Articles are being written and clinics established. From my own understanding of this condition the coronavirus can attack many different organs. There may be severe damage to the lungs and the inability to oxygenate properly. Some people get a difficulty with maintaining oxygenation with exercise. The heart can be damaged with a myocarditis and there can be damage to the kidneys, liver, and bone marrow. The immune reaction of the body may cause anaemia or many other disorders as would be expected within an autoimmune process. Thromboses and blood clots may occur as can a range of neurological complications both inflammatory, ischaemic, and thrombotic. Those that were in intensive care will suffer post traumatic stress disorder and other psychological issues such as depression or even anxiety. Sleep may be severely disrupted, and chronic fatigue will also emerge within this group of suffering individuals. What is apparent is the need for diagnostic testing. At the time of writing this article it is almost impossible to get lung function tests done in the United Kingdom (for reasons that I still just do not understand). It is essential that anyone who has symptoms following the COVID-19 infection is fully investigated in order to work out why their symptoms have not gone away. The majority of people do make a full recovery, but a significant percentage will endure long-term health issues. Understanding why these symptoms persist has to be the first step I trying to work out proper treatment strategies. If finally, the diagnosis turns out to be a chronic fatigue syndrome in the aftermath of the viral infection, then the treatment strategies would be similar to those discussed for the above conditions.

THE BIOPSYCHOSOCIAL MODEL

A Dr Engel in 1978, first proposed a biopsychosocial model of symptom generation. In recent years Professor Grant Iverson, an American Neuropsychologist has together with other Neuropsychologists expanded thinking in this area although more with regard to brain injury. The biological substrate is whatever the condition that generates the primary symptom. It does not matter whether this is a disease process such as cancer, an injury, a post-operative state, and even one of the diagnoses as discussed in this article. These are all biological substrates that generate symptoms and distress for the suffering individual. By having such a symptoms or problem the patient will suffer psychological and social consequences. Any chronic symptom will tend to generate a low mood or depression. This can change the personality of an individual. Any acute symptoms such that might occur with injury or even acute surgical emergency will generate anxiety. These are the predominant psychological consequences of illness or a challenged health. By having such symptoms and problems be they physical or psychological there will be social consequences. An individual may not be able to go to work. Their relationships may be impacted, and leisure and hobby pursuits may diminish. All of these considerations are what is known as impairments. This aspect of the analysis for most people is obvious. What often is not so obvious and needs explanation is the fact that if there are any psychological or social aspects in the life of an individual that are negative then the biological substrate will not get any better as a consequence of this negativity. In simple terms it will lead to a worsening of the biological symptoms. If an individual for instance, is generating psychological and social difficulties then a win on the national lottery will not take the migraine away, but a lot of the psychological and social challenges will be diminished. At the same time as having migraine if there is a tragedy within the family or difficulties within the workplace or employment such as bullying or redundancy then an individual will tend to have more not less migraine. The same principle applies with regard to all of the syndromes as listed above. It must be emphasised that this is not saying that these conditions are psychological or social in origin. It is merely stating that because these disorders are based within the brain and have a physiological and neuropharmacological basis then all else that is normal for injury and the disease processes will apply to these conditions as well. This thinking begins to give insight as to why multidisciplinary treatment regimes are required. It also gives an explanation as to why isolated attempts at treatments whatever they may be often fail.

THE TREATMENT OF NON-SURGICAL AND NON-MALIGNANT DISORDERS

As soon as any individual having been investigated is found not to have a need for surgical or specific disease orientated treatments, then the management or treatment of any symptom or disorder become what is known as generic. There are four types of generic treatment. These are physical treatments, injection treatments, talking therapies and pharmacological therapies. Each of these treatment strategies has been discussed fully in my article on multi-disciplinary treatment programs.