Post-Viral Fatigue Syndrome 28 January 2021 Long COVID and Post-Viral Fatigue Syndrome With the emergence and rapid transmission of COVID-19 in early 2020 our understanding of the virus has deepened considerably over the ensuing months. Since the recovery window for those who contract the virus is around 2-3 weeks, there has been ample opportunity to observe not only the pre-, and during, stages of infection but, vitally, the implications of post-viral recovery. Long COVID has since become as widely spoken about as the virus itself; a condition that leaves some people (fortunately not the majority) with feelings of intense fatigue for many months after first contracting, and then recovering from it. A definition in the British Journal of Medicine states: ““Long covid” is a term being used to describe illness in people who have either recovered from covid-19 but are still report[ing] lasting effects of the infection or have had the usual symptoms for far longer than would be expected.” Elisabeth Mahase, clinical reporter According to the COVID Symptom Study, ‘one in 20 people are likely to suffer from COVID-19 symptoms lasting more than 8 weeks’. What is Post-Viral Fatigue Syndrome and how is it caused? Let’s take a step back a moment because Post-Viral Fatigue Syndrome (PVFS) is not a new phenomenon triggered by the current coronavirus pandemic. In fact, the syndrome shares a great deal of similarities to myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). Whilst ME and CFS are not always triggered by a viral infection, the similarities in presentation are strong enough that doctors will often approach them all in a similar fashion. Fatigue is sometimes referred to as an ‘invisible symptom’ yet it is a common result of the body’s natural response to fighting numerous types of infection. However, whereas this feeling of fatigue will usually pass when the infection has been overcome, PVFS is where the fatigue persists despite the body no longer being infected. There is a lack of unity within the medical community as to why PVFS emerges at all. One of the key schools of thought is that it may be a result of the body continuing to fight the residual effects of the infection. However, studies also argue the case for an immune system that has been overloaded or that it is a consequence of inflammation of the brain following a viral infection. Unfortunately, even though emerging studies indicate that it may be possible to predict those likely to develop long COVID, PVFS is a condition that we are all at risk of. The amount of time that a person experiences this type of fatigue is also difficult to quantify: there appears to be no consistent correlation between how severe the infection was or the level of fitness of the person affected by it. How is Post-Viral Fatigue diagnosed...and how is it different from tiredness or exhaustion? "Post-viral fatigue is completely different to 'normal' tiredness. As well as total exhaustion, people with post-viral fatigue feel generally unwell. It is sometimes seen among patients recovering from other viruses, such as the flu or mumps." Dr Sarah Jarvis, Clinical Director of Patient. Diagnosis of PVFS is not necessarily a straightforward process. This is because fatigue, in general, is a symptom of a variety of many other things such as other medical conditions, lifestyle related causes, stress and other mental health concerns. This means that it is likely to take a little longer to rule out other causes. That said, in relation to feelings of fatigue following a positive diagnosis of COVID-19, the dots will connect very quickly. In all instances, to facilitate a more conclusive and potentially quicker diagnosis, it is useful to keep a dated log of recent illness and symptoms. In addition, it is likely that your GP or consultant still also to carry out tests which may include: A blood test - to rule out the more common causes of fatigue such as diabetes, hypothyroidism and anaemia (iron deficiency) A sleep test - to rule out conditions such as sleep apnea or insomnia A physical exercise test - to rule out cardiovascular or respiratory conditions Questions about your mental health - to help identify conditions such as depression What are the symptoms of Post-Viral fatigue syndrome? PVFS is not simply a case of feeling tired or lethargic. There are a number of symptoms attributable to the condition. This is not to say that all of them will be experienced by everyone diagnosed with PVFS but rather, across multiple studies, including Lask and Dillon (1990), Behan and Behan (1988), Behan et al. (2007), the following symptoms have been identified: concentration difficulties and forgetfulness dizziness, balance or gait problems emotional irritability excessive sleep or other sleep disturbance exhaustion headaches irritable bowel syndrome light sensitivity mild fever myalgia (muscle pain) night sweats severe fatigue made worse by exercise (post-exertional malaise (PEM)) sore throat swollen lymph nodes unexplained muscle and joint pain The first port of call if you are experiencing some or any of the symptoms above will be to consult for your GP. How Long Does Post-Viral Fatigue Last? The length of time that a person can expect to suffer from PVFS differs for each individual. As PVFS specifically in relation to COVID-19, long COVID, is still so new, it is not yet possible to draw any strong conclusions as to how long the symptoms will last. However, PVFS in its other forms and in relation to different specific infections indicate that the length of time really is wildly variable. For example, in one study listed in Viral Immunology it is reported that people infected with the West Nile virus, spread by mosquitoes, on average, experienced fatigue for 5 years. This, fortunately, would so far appear to be a worst case scenario! Nevertheless, until a greater amount of time passes it will be difficult to provide a more generalised timeframe for long-covid symptoms. How could Post-Viral Fatigue Syndrome impact your life? Post-viral fatigue syndrome can have many implications on a variety of areas of your life but the most worrying can be in relation to your care duties and your ability to work. Working and looking after children with PVFS It is a natural concern for anyone diagnosed with PVFS that it may impact their ability to work or look after their children. As PVFS can be so debilitating, you are likely to experience significant decreases in energy levels. This can mean that a large amount of your recovery time at first is spent in bed or sitting down. As PFVS will be diagnosed by your GP, you will be encouraged to take sick leave. In the majority of cases this will allow for a much faster recovery, meaning a return to full work capacity sooner rather than having to endure the prolonged period of slower recovery. However, you should not worry that you will be unable to do things such as care for your children. PVFS, in most cases, will not mean you are bedbound day-in and day-out. For many it will just mean the need for frequent break periods and time spent with the kids doing less strenuous activities. It may be wise to ask for an extra pair of helping hands when you can, from grandparents, family members or close friends, or changing how household responsibilities are split between the whole family. Frustratingly, there is currently no known cure for PVFS. However, as there are no specific treatment pathways to overcoming post-viral fatigue, ME or CFS, and differing opinions on how to do so, there are a variety of recommendations for measures that can be taken which can help to mitigate and alleviate the symptoms. These include: Rest The biggest and most important part of your recovery process will be to allow for plenty of rest. Whilst conditions such as ME and chronic fatigue syndrome can be triggered without a viral infection preceding them, PVFS is the result of the body’s battle with an infection. The body will literally have been at war with a formidable enemy and following such a large scale battle will inevitably be exhausted by the effort. Allow it to rest and regroup. Light exercise This is important because, like with all things, too much rest can actually be a bad thing! By over-resting each day you will run the risk of increasing, rather than decreasing, the symptoms of fatigue. Some gentle walking could be enough to begin alleviating the symptoms of PVFS, and some people find simply meditating or engaging with a meditative activity like yoga to be beneficial. You may even find some useful guidance for light exercise options in our earlier blog. Over time it would be a good idea to gradually increase the effort. Stick to a routine A routine will prove to be invaluable because it will create a consistent framework of recovery for your body to adapt to. In a similar way to the frustrations of a disruptive sleep cycle, achieving regularity and predictability in your schedule will help aid your recovery process. Aim for a consistent and balanced nutritionally dense diet As with the above, a good diet will provide your body with the nutrients it needs in order to fuel your recovery. Drinking plenty of water and consuming a daily diet rich in wholefoods (even if they are blended into soups or smoothies) will mean your body is receiving the best type of fuel possible. Be patient As we’ve seen the recovery process for PVFS can take a considerable amount of time. It will be a process that culminates faster by being patient with it - trying to get back on your feet prematurely will, in many instances, slow your recovery down and prolong the unpleasant experience. If your body is this tired, it’s a sure sign that it wants to be listened to. Focus on recovery means taking time out from work and study In order to help give your body the best chances of a faster recovery it is advisable to remove as much extraneous stress as possible. Even though PVFS will mean you are unable to do much more than lay in bed or rest on the sofa, making a point to take time off from work or study is likely to be a valuable contribution to your recovery efforts. If you cannot take time off, explore how you can remove some burdens or work flexibly in time or location to allow yourself to rest when you feel tired. Make it enjoyable/motivating Even though PVFS will not be a pleasant experience, a positive mental attitude and overall feelings of happiness will invariably be beneficial. As you work on getting your feet back on the ground and your head back in the game, try to make the experience engaging, if not fun. That light exercise could include finding the joy in slow walks around the neighbourhood and discovering new local secrets or, if that’s too much, some gentle stretching throughout the day could be a fun project taking you towards the most flexible version of yourself ever! If you find that your symptoms are not improving then the advice is always to seek guidance from your GP. This will allow them to determine whether or not your symptoms are the result of a viral infection or if there are other issues involved. If, beyond this, the fatigue you continue to experience is especially high then your GP should be able to direct you to specialist ME/CFS services. Keeping yourself safe Recovering from any viral infection takes an enormous amount of energy and in many cases the body will reset to normal levels of energy once the infection has been defeated. However, as we know, there are instances where this recovery can take exponentially longer than normal and in these cases it may be that you have developed post-viral fatigue. If you, or a loved one, are experiencing PVFS, you may find your confidence also feels knocked - from worrying about being overcome with tiredness whilst you’re out and needing assistance, to being more susceptible to other illnesses whilst your immune system gets back to its full capacity. MedicAlert can help keep you safe by ensuring your medical information, including your PVFS or long-covid diagnosis, is available to those caring for you if you do have an emergency. Membership provides peace of mind and confidence, to support you as you recover from PVFS. You can discover all of the benefits of membership or click below to join now. “Having my MedicAlert just makes me feel safe. It's reassuring because it's like having someone by my side, ready to talk for me if I can't” Angela Foster, member. Additional Sources of Help and Guidance NHS | Your COVID Recovery The British Association for CFS/ME (BACME) Royal College of Occupational Therapists Intensive Care Society Article Categories Medical Conditions Covid
