Long Covid definitely needs our attention. There are a significant number of people suffering persistent symptoms following the resolution of the acute phase. Perhaps in the region of 100 million cases worldwide (Chen et al., 2021). This is causing great concern, fuelled by the uncertainty surrounding the condition. Undoubtedly there are unknowns, but there are also some knowns. Perhaps we can consider these and build as a more positive approach, adapting as we learn more. Just like every other condition we manage and treat.
A recent systematic review and meta-analysis revealed that the most common and troublesome symptoms of post-COVID-19 are fatigue and cognitive impairment (Ceban et al., 2021). The authors found that approximately 1:3 people experience fatigue and 1:5 suffered cognitive impairmentfor twelve or more weeks after diagnosis.
They also discovered an increase in inflammatory markers (eg/ circulating cytokines, CRP) and functional impairment. It is natural to assume that there could be some similarity with chronic fatigue syndrome and other persistent pain states. Chronic inflammation plays a role in these conditions, although we must be careful not to reduce a lived experience down to biology or a particular body system.
Other labs have made further discoveries. For instance, Professor Resia Pretorius from Stellenbosch University reported microclots in the blood of Covid and long Covid patients (writing in The Guardian, 5th Jan 2021). Inflammatory molecules were found inside these clots, meaning that routine blood tests would not detect higher levels of inflammation. Tests show up as normal.
When test results are negative, people can be told that they are fine and the problem is psychological. This commonly happens in persistent pain when typically there is nothing significant to be seen on scans to explain the symptom severity.
Because you can’t see it, this does NOT make it any less real
However, there is always a biology at play–nothing can be purely psychological. We experience ourselves and the world because we have a body. This lived experience is embodied and unified. The idea of a separate body and mind is hundreds of years old and not fit for purpose. Yet society continues to use this as a basis to understand life.
Just because you cannot find an answer on a test, it does not mean that the problem is psychological or somehow less real. You can never see pain for instance. Does this make it unreal? Of course not.
Fortunately, the thinking is evolving, albeit in small quarters. Seeing the person first and as a whole, listening to their narrative and validating the story are all fundamental parts of the modern approach to helping people. We need to make sense of test results and other objective markers in the light of this narrative. Only by bringing them together can we make sense of the person’s lived world for them. This is why understanding the biology of long Covid is important together with taking the time to listen to what the people suffering the condition say about their encounters.
I think we can be certain that long Covid is a condition that involves many body systems. For instance, any defence of the body involves the nervous, immune and endocrine systems working as an ensemble (Chapman et al., 2008). The work mentioned above highlights the vascular system, and a further study by Davis et al. (2021) found patients (n=3762) with long Covid reported significant and persisting disability, involving ten body systems over seven months.
what can we do?
The first step is to listen to the person and give meaning to their experience. Each individual will have a unique story and symptom profile to be understood. In turn, this leads to an examination and any relevant tests–bearing in mind certain factors such as those mentioned above. In other words, there needs to be a marrying of the subjective lived experience with objective measures, considering that subjective and objective are fundamentally different.
The types of symptoms will indicate which systems are involved. Again, we must recognise that systems do not work in isolation and we should be careful not to reduce the person down to a body part. The whole person approach is key. A person, their lived experience, in a context, in an environment.
Below, I outline at some of the areas that we look at when the person is suffering persistent pain. I believe there is significant cross-over and that the Pain Coaching approach is in line with meeting the needs of the person suffering long Covid as with other longer term conditions.
This is a guide only and should not replace medical advice or treatment, but maybe useful.
There are many more, but this will give some insight into the positive steps you can take. In the words of James Clear of Atomic Habits fame, each step or act is a vote for the person you want to become; i.e./ the healthy, well you.
One of the first steps to overcoming persistent pain is to understand your experience. I would argue that this is the same for any condition, including long Covid. Many of the symptoms can be viewed as a sickness response. Most people will relate to this, having had the flu. As the term implies, it is a set of responses by the ensemble of body systems charged with the purpose of protecting us and gradually restoring homeostasis.
The sickness response has been studied. The symptoms resemble those of long Covid in many cases. Classically, it was thought to be underpinned by communication between the immune system and the brain (Dantzer et al., 2000). Now we can think more broadly as we understand the integrated way that body systems operate.
Inflammation is at the heart of the biological response. If we can say that there is a ‘feel’ to inflammation, it would include general malaise, fatigue, aches, fogginess, gut disturbance and sleep disruption to name a few. Knowing this means we can do things that are anti-inflammatory: e.g./ breathing (parasympathetic effects), feeling joy, laughing, moving (see below), diet, managing activities, connecting with people, pursuing a purpose.
Of course some of these things will be done in small chunks, which is why organising your day is important.
Undoubtedly, someone suffering long Covid should have support, guidance and help. But ultimately, we have the responsibility to self-care in the ways that we can and importantly, we can decide the approach we take to getting better.
Initially of course, it can be very distressing and worrying. The impact upon life can create great and on-going concerns. For instance, an inability to work, causing financial strain. Where possible, these concerns should be addressed as part of the wider picture of social and health care.
Self-care can seem onerous at the outset for some people. But realising that you can make informed choices brings a sense of control. I am keen to empower the people I work with, which is why understanding pain or long Covid is important.
What does self-care include? Potentially a huge topic, the essence is in how you look after yourself in a practical sense, but also the way you do it. Some examples of the practicalities are outlined below. On the how, I encourage self-compassion.
We have a tendency to be self-critical, which increases suffering. Instead we can cultivate patience, caring concern and kindness towards ourselves. You can read more about this in the December ’21 edition of The Encourager, my newsletter featuring self-compassion as a theme for the month.
Understanding your lived experience and knowing the timelines help you to manage your expectations. A mismatch of what you expect and what actually happens results in further difficulties and disappointments.
Sometimes with help or independently, you can set your expectations at the right level.
Knowing what you can do, how much and when to stop and re-charge are all part of the way you seek to meet or even exceed your expectations. This is one of the ways we get better, by creating evidence that we can through the practices and situations we actively set up and then enact successful; votes for the healthy me.
Having a daily plan helps you to be consistent. Small steps and practices each day with recharge points, help you move towards the healthy you.
We are much more likely to follow through with a plan, especially if written down. You can then tick off your wins.
This can be tricky. Especially when the body aches, you are exhausted or suffering pain. Yet we need movement to build health.
You can start by trying a handful of simple movements that are within your window of tolerance. This does not mean symptoms free, but it does mean you have a positive experience of being active.
Again, small steps that can be build upon and lining up expectations (what I think I can do) with reality (what I can actually do).
There is not much we can achieve without moving. Getting this habit going can be tough, but the cost of the alternative is increasing fatigue, pain and withdrawal. You can set yourself a goal to work towards and then chunk it into the smaller daily steps.
At regular points through the day, we all need to recharge. Or pause. Many don’t and then have to because they run out of steam–burnout. In long Covid, this is a vital practice. It needs to be regular and consistent, and definitely after an activity. Recover like an athlete.
As I said, there are many more practices, skills and tools that you can use to reach your wellness potential. It does seem to take time, and this requires acceptance, a practice in itself.
You will have noticed that all of these ways can be actively chosen as you decide to take control, alongside any other treatment you may be having.
You have clarified your picture of success, and now you are taking the daily steps towards it, dealing increasingly skilfully with the inevitable ups and downs. There is no straight line to recovery. Instead, a winding road, full of learning.
I have worked with people suffering and enduring persistent conditions for many years, initially as a registered nurse in the 90s and then as a physiotherapist and pain coach. Over the past year or so, I have been seeing people suffering the effects of long Covid. But as with persistent pain, I am optimistic that given the right understanding and tools, people can shape positive futures. You can contact me via the button below.
Ceban et al. (2021) Fatigue and cognitive impairment in post-COVID-19 syndrome: a systematic review and meta-analysis. Brain, Behaviour & Immunity. In Press.
Chapman et al. (2008) Pain and stress in a systems perspective: reciprocal neural, endocrine and immune interactions.
Chen et al. (2021) Global prevalence of post-acute sequelae of COVID-19 (PASC) or Long COVID: a meta-analysis and systematic review. medRxiv preprint.
Dantzer et al. (2000). Sickness behaviour: a neuroimmune-based response to infectious disease. Research and Perspectives in Neurosciences book series.
Davis et al. (2021) Characterising long COVID in an international cohort: 7 months of symptoms and their impact. EClin Med (Lancet). Open Access.
The Guardian. Could microclots help explain the mystery of long Covid? Professor Resia Pretorius. Wed 5 Jan 2021.