Post COVID-19 Syndrome or "Long COVID"

 

Consultant Neurologists have always been on the front line of medical care giving advice on the horrid infections that have persecuted us over many years.

The virus now called COVID-19 has literally sent shockwaves round our previously complacent world. Distracted by perhaps other important but not such acute challenge, this tiny viral particle (0.12 microns) infects humans. It is the seventh such corona virus. Four of these viruses cause a mild cold. Two the MERS and SARS viruses generated a more devastating illness but were brief in how they impacted. This virus has come and is not going to go away. I could spend a lot of time discussing how different countries have dealt with the situation. This discussion article, however, focuses on what we now know seems to be the long-term consequences rather than the acute illness. Large numbers of people have suffered bereavement, usually amongst their older generation relatives. Current figures show that 94% of all people who have died in the world are over the age of 60. It is almost unknown for a normal, healthy, not-obese young person to pass with the condition, but like all infections there are always going to be exceptions, possibly because of an unknown genetic reason. The treatment strategies are also infinitely better than they were at the outset and that again could be the subject of a significant paper.

 

I would send my condolences to anybody reading this article, who has faced bereavement.

From the beginnings of medicine, it has been known that infections are not just rife but can have lasting effects on some people. The classic condition has always been glandular fever caused by the Epstein Barr virus (EBV). Many people with this viral infection get no symptoms at all, others get an acute unpleasant febrile illness, with gland and spleen enlargement together with a rash. Most make a good recovery, but a percentage go on to get chronic fatigue, or what could have been called long glandular fever. Influenza can do the same, particularly in those who are badly affected, and it is very common in individuals who suffer with viral meningitis and hepatitis. The acute illness may settle, but the long-term effects may extend for months and occasionally years. There has also been a lot of discussion about the chronic fatigue syndrome that used to be called ME, as many people will develop this disorder after an infection.

 

There are also other neurological illnesses, such as the Guillain Barre syndrome, or acute post-infectious inflammatory polyneuropathy, whereby an infection gets better but then leads to an autoimmune, that is self-damaging, process that afflicts the peripheral nervous system. The recovery from this disorder can take several years. There is also a chronic and relapsing form of the condition.

 

On this background it is not surprising that such vast numbers of people infected with covid-19, will demonstrate every kind of neurological and even psychological complication.

 

I have always perceived that people  who get post-influenza or post-glandular fever syndromes (long glandular fever or long influenza) probably have a genetic predisposition. The symptoms of these disorders including fatigue, muscle pain, and what individuals often call brain fog. These problems arise because the brain just does not get back to working normally. Anyone who has had severe influenza or those who have been through COVID-19, or glandular fever will know that during the acute course of the illness, it is almost impossible to stay awake let alone think properly and with the case of COVID-19, the interminable cough like that of whooping cough will stop sleep. This just leads to bodily exhaustion.

 

Like the development of chronic pain, the brain learns the fatigue and exhaustion. It may  well be that certain parts of the brain are actually “infected” or changed their neural pathways and neural connections by virtue of the infective insult.

 

The brain is by far the most complex structure within our known universe. There are at least 60 billion neurons most of which have between 7,00 and 10,000 connections. What this means is that there is a lot that can go wrong. Although in these enlightened days, talking about experimental animal work is challenging, enough information has filtered down from the past to give further clues as to what happens when the brain or other parts of the body are insulted.

 

When a laboratory animal, such as a rat, had something done to it under anaesthetic (excluding what might be thought of as pain or stress) pharmacological, structural, and physiological changes can be measured within the brain in as short a time as one hour. This demonstrates; the brain, and its connections are quite fluid and changing all the time.

A Dr Engel in 1978, proposed the biopsychosocial model of all illness and injury.

 

The biological substrate represents whatever illness, injury, disease, or infection has afflicted the individual. In the case of COVID-19 there could be severe lung disease, there could be damage to the central nervous system or other organ systems. It may be that individual just feels really sick with a fever and a cough and frustration. The mere act of this illness will have psychological and social consequences. That is not actually saying anything very special. With any infection, an individual needs to go to bed. It makes them feel miserable. They are not able to interact with their social and work experience. With covid-19, this is emphasised even more on the basis of social isolation, even for 7-14 days after the infection has seemingly dissipated. That means that there is an even greater negativity and what would usually be the early rehabilitation and recovery convalescent phase, is taken from most people. Instead of feeling dreadfully weak for 2 weeks, there is an enforced further one 1-2 weeks of inactivity, poor or no social contact, and I suspect, poor nutrition and hydration.

 

What is forgotten about the biopsychosocial model, is that if an individual has anything else going on in their life, be it social or psychological, this in turn will have a negative impact on the biological substrate.

 

If a job is at risk, a relationship challenged, an inability to see the children or grandchildren, worries about finance, or anything else at all, then this will have a negative feedback on what were the biological components of the illness.

 

It can be seen that there is a literal vicious circle of negativity both physically, psychologically, and emotionally.

 

This is not saying that the chronic fatigue syndrome or long COVID is a psychological construct. As I personally see it, it is physiological, probably neurotransmitter generated with possible structural components. The problem being we have no tests to measure effectively.

 

From the psychological perspective, it is not possible to switch on the TV, pick up a newspaper or look at social media, or even go out on the street without COVID-19 being in everyone’s face.

 

My wife, a career nurse and I, were legally in Waitrose doing shopping, with our one-year-old granddaughter sitting in a trolley. We were wearing masks. The baby was not for obvious reasons. As we turned an aisle, an individual, not that old, literally climbed up the shelving in order, we assume, to avoid the heinous sight of a gurgling happy one-year-old grandchild sitting in the trolley unmasked. If you reading this perceive that this behaviour was normal, then I cannot help you. If you think that perhaps the reaction was a little over the top, then you are beginning to realise the challenge that the whole of society is going to face probably, indefinitely, and certainly throughout most of the older generation’s lifetime. The psychological consequences for all of us at the moment, great and if you have the infection, even greater. There are extra elements to consider. We read about so many people dying. If you get the infection and one of your friends or family has an older relative who have passed, then that in itself will carry with it a much greater psychological input.

 

The greater the psychological input, the more likely the biological substrate will be maintained and persist by virtue of the brain generating symptoms.

 

Some people are remarkably good after intervention. One of the Olympic gold medal winners in the marathon did so 2 weeks after having their appendix removed. An American discus thrower won a gold medal 6 weeks after a major neck operation. Very few of us have the resilience of Olympic athletes, but the point, I think, is made. There is a spectrum of illness in terms of its severity. There is a spectrum of how we deal with illness emotionally and psychologically, and there is a spectrum of how we recover.

At the moment, significant observations and early research work is looking into the concept of long COVID. Scanning has been carried out, and I suspect like chronic fatigue syndrome, no investigations are likely to reveal any structural or physiological cause that will have a specific treatment. I would really like to be proved wrong and if that happens, let me know immediately, as it would give no greater satisfaction than to be able to offer a simple treatment to remove people from this major enduring challenge.

 

With the assumption that there is no specific treatment, and no surgical intervention, which is highly likely, then the management has to be medical. There are four modalities of medical treatment. These are physical treatments, injection treatments, talking therapies, and pharmacological therapy.

Physical treatments include the input of physiotherapists, occupational therapists, and therapeutic trainers, that is Level 4 personal trainers used to dealing with ill health and illness. The key to physical treatment is in the help given and encouragement to recondition. The building of fitness, stamina, and strength a vital part of all illness recovery. There is so much evidence out there now showing the benefit of exercise in more or less every condition known. The only time that exercise is not beneficial is if there is a broken leg and it will be unwise to walk on it without a plaster cast being in place.

 

Respiratory physiotherapists have a major role particularly in those who have recovered from severe or even any lung involvement. Damaged lungs, stiff lungs, and the lungs of smokers and asthma sufferers post-infection will need particular attention. There will also be a lot of hyperventilation and dysfunctional breathing needing both insight, understanding and very careful assessment and management. The anxiety of the COVID situation will actually compound and confound this with individuals becoming anxious, which in turn makes the respiratory mechanism both less efficient and more challenging. Good respiratory physiotherapy input will facilitate retraining and reconditioning of the breathing mechanism.

People with chronic fatigue talk about the difference in physical activity known as pacing or grading. Pacing means you do a bit and if it hurts you stop and you just do as much as you feel you can do over and over again. Grading means you walk 10 yards today but try and do 11 yards tomorrow and build up thereafter on a day by day basis.

 

Personally, I do not perceive that pacing has a superficial role, everything with exercise is often poor in any case and the motivation to extend exercise limited. That comment will cause upset within some parts of the chronic fatigue syndrome world.

 

Graded exercise means building up very slowly. The more an individual does, the better they get, and the reverse applies. There is no right or wrong as to the rate of reconditioning. The important factor, a constant enhancement of the general levels of fitness, stamina, and strength, working with physiotherapists, trainers, or occupational therapists.

 

It is often forgotten that amongst physical treatment locals heat, the application of ice, vibration and massage can downgrade any muscular discomfort that is bound to happen. When I have had flu in the past, 2 weeks moribund in bed, led to extreme tiredness on getting up, considerable muscle pain and a feeling of weakness. This then followed a trajectory of recovery, but it was a work in progress, building up over several weeks.

Injection treatments include acupuncture and the use of a TENS machine. These are very helpful if an individual has enduring muscle pain and spasm as a consequence of their immobility, their general weakness and enduring global pain.

 

Talking therapies involves working with a Consultant psychologist looking at all the emotional and psychological challenges of the illness. The input of a neuropsychologist measuring every aspect of brain function will demonstrate to the suffering individual whether their brain has been actually impacted by virtue of the standard testing regimes available. The neuropsychologist can also identify if the pattern of under functioning is more due to the psychological and emotional state.

 

Interestingly, clinical hypnotherapy may have role here, but there are no trials of this particular treatment. A lot will depend on the individual consultant psychologist being involved determining what is the best treatment strategy.

 

Pharmacological therapy involves using medications to try and alter the brain milieu. Having explained that it is the brain not working properly (the pain is in the brain) it is necessary to try and find medications that enable the brain to literally relearn or switch off the symptoms and then function more normally over a number of months before the medicine is then withdrawn.

 

It is the fact that antidepressant drugs are so frequently used in this situation, that for some reason that I can never understand, causes immense distress. If an individual has spent a year or more doing nothing in the state of total fatigue, it seems illogical that the offer of a trial of low dose antidepressant therapy should be so soundly and roundly rejected as to actually cast doubt on the level of symptom complained. The comment that  a fear of side effects stops treatment does not carry any water or weight with me.

 

The reason I say this, is if an individual develops cancer and they see a cancer specialist, that doctor will explain the appalling side effects that will impact on the suffering individual often for years. The suffering individual with cancer will ask “when do I start?” and there is very little thought given to the side effect profile. However bad the side effects are explained, the individual is impatient to get going. Regrettably, what the COVID-19 crisis has done is stop appropriate cancer treatment being given.

 

Low doses of some antidepressant drugs block pain enhance energy levels by reducing fatigue and will normalise sleep. They may have an effect on the fatigue by virtue of being an activating agent. They have the same effect of being an antidepressant drug, so improving mood

Other medicines are also used in this situation and they would need to be discussed with your specialist. The science indicates that these medication work, but it is an art to find the right dose of the right drug in any individual. I have also used stimulant drugs in this situation such as modafinil or methylphenidate. These medicines are used in sleep disorders such as narcolepsy and the latter in ADHD in children. Finding the right dose in any individual, the absolute skill.

 

Using a multidisciplinary regime of treatment, it would be unusual not to find a regime that helped an individual significantly. Nobody has to accept all of the treatment strategies. A diary of symptoms an absolute imperative. Working with your consultant, trusting their opinion, and understanding that they trust your own symptoms an absolute need for a successful therapeutic relationship.

 

People often ask me how long the treatment will have to continue. I am renowned for having a slightly off centre sense of humour and my usual response is “This is the wrong question-the right question is will this drug work for me?” my answer “we should be so lucky together that it actually works”. The point being that if it does not work, the individual will be stopping it straight away, whereas if it does work, they will be continuing on it.

Any successful treatments should continue for six months before they would need to effect a very slow withdrawal, hopefully the brain having retrained itself not to give the unpleasant symptoms.

I am not aware of any long COVID clinics being set up in the NHS yet, but they are bound to arise. They may form part of pain management or the clinical neurology services. The therapists at The Body Factory Rehabilitation Centre in Harrow, will be able to provide a full treatment program. I do notify a vested interest in owning the rehabilitation centre. For the record, I do not take an active treating role unless invited to do so and I leave all the treatment strategies to the therapists instructed. Drug therapy, however, does need to be prescribed by a specialist. In my experience GPs are not content prescribing the medications as recommended until they have been initiated at specialist level and thought to need continuance. All medications can have side effects, but the medications suggested would be in low dose and most side effects transient and insignificant compared to the suffering, the side effect profile very much less. If concerned ask and read the literature. The ultimate decision on treatment is for the suffering individual, not the doctor.