A few weeks ago I posted a short article from the Guardian about the use of Graded Exercise Therapy or GET as its often referred to and its use for those with Long COVID. To my surprise, this created a lot of response and reaction that I was not expecting, and as I know very little about Long COVID I thought I should do some further reading and share my thoughts on what I’ve found so far.
The first thing to mention about GET is that it seems to be surrounded by a lot of emotion, anger, and accusations that I have no desire to get involved with at all. A lot of this hostility appears to revolve around some researchers and advocates of GET being accused of callous, malicious, and harmful behaviour by some Chronic Fatigue Syndrome and Myalgic Encephalomyelitis groups or CFS/ME for short (ref, ref)
This is because GET has been seen to significantly exacerbate, worsen, and prolong symptoms in many of those with CFS/ME and other post-viral fatigue syndromes to which Long COVID is thought to, in part, belong. There have also been accusations of GET advocates not listening or believing those with CFS/ME calling them lazy, malingerers, and even fakers who are disrupting their scientific studies. This has allegedly led some GET researchers to receive official complaints, hate mail, and even death threats which is just crazy.
Now, as I said I do not want to get involved in any of this toxicity other than to say calling anyone suffering from any symptom a faker or malingerer is abhorrent and horrible, even more so if you are a healthcare professional. But then so is making false allegations and death threats to anyone especially someone trying to help others by conducting research into a mostly unknown condition. Anyway regardless of who may, or may not have said what this nastiness just needs to stop and the time and energy directed elsewhere.
What is Long COVID?
So after a few weeks of reading around Long COVID, CFS/ME and GET I will admit that I still know very little about it, and there are clearly still a lot of uncertainties, unknowns, and speculations going on by some armchair experts and amateur bloggers to which I am now adding to. There are also a lot of attacks and accusations being flung at anyone who does share an opinion, express a view, or write a blog on this topic and so it is with some trepidation that I write this as I am sure there will be some mistakes and misinterpretations within it… so if you’re reading this #BeKind.
Long COVID is still a largely unknown condition with many varied symptoms, no clear diagnostic criteria, and no firm ideas about how best to manage or treat it. Long COVID is thought to be a collection of many different syndromes that can manifest in many different ways (ref). One type of Long COVID that appears to be most uncertain is one that has no signs of any adverse organ deficits or clear objective tests and is thought to possibly be a post-viral syndrome which is also known to occur after many other viral infections such as Ebola, Dengue, Zika, even Herpes and good old traditional influenza (ref).
This type of Long COVID is believed to share a lot of similarities with CFS/ME such as profound generalised post-exertional fatigue, loss of muscle power, pain, and malaise often reported to be delayed in onset and quite unlike the ‘fatigue’ experienced by healthy people (ref). This type of Long COVID is also thought to cause cognitive issues such as difficulty concentrating and ‘brain fog’, as well as symptoms of unprovoked breathlessness, increased heart rate, dizziness, difficulty sleeping, anxiety, and depression (ref).
The causes of many Long COVID symptoms are currently just not well understood but are clearly a mix of physiological, psychological, and social factors. One of the strongest theories of post-viral syndromes is that they may be due, in part, to a process known as mitochondrial hijacking (ref). Mitochondria are our tiny yet extremely powerful ‘engines’ in all of our cells providing energy for all its chemical cellular reactions to occur, and without them, nothing happens. Once inside our cells, a virus like COVID-19 is thought to invade our mitochondria and hijack them to provide energy for their own replication rather than doing their original jobs, slowing down and even stopping our normal cellular processes (ref, ref).
How Long is Long COVID?
The simple answer is no-one really knows how long Long COVID lasts, but some estimates suggest that 1 in 7 people may suffer from Long COVID like symptoms for up to 4 weeks, 1 in 20 up to 8 weeks, and 1 in 45 with symptoms lasting more than 12 weeks (ref). It also seems older age, higher BMI, and female gender are greater risk factors for longer Long COVID (ref).
This clearly means that a lot of people will have Long COVID symptoms when you consider that in the UK alone we had 4.27 million known infections at the time of writing this blog, and these are only the infections we know about. There is also no doubt that many physios and other therapists will start to see more and more people with COVID related issues that affect their function and ability in an effort to help them with their recovery, which leads us back to the topic of what should we be advising and recommending to those with Long COVID symptoms to do in terms of exercise and activity.
Now there is no denying that there simply isn’t enough information yet to say definitively what is or is not the best advice. But using what we do know based on current knowledge and experiences of other post-viral fatigue syndromes, rest, recuperation, and convalescence is without a doubt, an important factor in recovery. However, there is also no denying that as clinicians and human beings are all pretty crap at recommending and engaging with rest, recuperation and convalescence with it often being viewed negatively as lazy, idol, and unproductive.
And there is no doubt that too much time away from activity, work, and other tasks can be detrimental and unhelpful, but so can pushing too hard, too quickly with post-viral syndromes as this just doesn’t help them recover faster or better (ref). So where does this leave us with our recommendations for activity and exercise? Should we tell those with Long COVID to do nothing, a little now and then, or more than that?
Long COVID and Exercise
A lot of the debate and disagreement I have seen around the topic of Long COVD, CFS/ME and exercise seems to revolve around differences in the interpretation of the words exercise, activity, graded and pacing. For example, some strongly suggest that all exercise is to be avoided and only paced activity is to be recommended, in fact, this is now in the UKs national NICE guidelines for CFS/ME here.
However, this is where I have some difficulty I think due to differences in interpretation of what is, and what is not, considered an exercise or an activity. For example, some define exercise as something that is always planned, structured, repetitive, intentional and progressive that either improves or maintains fitness, whereas activity is not. I disagree and think this is a narrow and limited definition of exercise which can often be unplanned, unstructured, unintentional, and not progressive, and conversely, at times activity can be structured, planned, intentional, and progressive and also help improve or maintain fitness.
Others think it is the task itself that differentiates an exercise from an activity, for example walking is an activity, running is an exercise. Again I disagree because what I think defines what is, and what is not an exercise or an activity is based on the individuals perceived level of effort doing the task, not the actual task itself.
For example, walking for some can be perceived as very effortful and so could be classed as exercise, however, for others running can be perceived as not effortful and so would be an activity and only classed as exercise when it reaches an intensity where it feels challenging.
I do agree that exercise and activity are not the same, but my simpler definition of exercise is basically anything an individual feels challenging and effortful. This can therefore mean that for some getting out of bed, lifting a coffee cup, or sitting upright in a chair can be classed as exercise, such as when recovering from an extended period of inactivity say after admission on an ITU, or due to a post-viral syndrome such as Long COVID.
Now it’s important to say that post-viral syndromes are not physiologically the same as deconditioning from extended periods of inactivity, however, although they are completely different in cause and effect I don’t think this means the underlying principles of managing them needs to be completely different. In my opinion, anyone with fatigue or deconditioning regardless of the cause should first steadily work within their tolerance levels, ensuring sufficient rest and recovery, and let the processes of time, homeostasis, and adaption do the rest.
For those with Long COVID or any other post-viral syndrome this means asking them to internally monitor their own feelings of pain/energy/fatigue hour by hour, day by day, week by week, doing what they can, when they can, avoiding boom or bust cycles, and of course, resting and recovering when needed. One way of helping with this is to use wearable heart rate monitors to ensure that during exercise or activity they don’t go above their anaerobic threshold. A simple way to calculate this is to use approximately 55% of your max heart rate which can be done by subtracting your age from 220 and multiplying that number by 0.55, so for myself that would be 220-47 = 173 x 0.55 = 95 bpm, a target zone of 10% either side is then suggested so for me that’s between 85 and 105 bpm (ref).
Now if you decide to call this graded exercise therapy, paced activity treatment, or anything else I don’t think it really matters that much in my humble opinion. This simply is probably best described as individualised person-centred or patient-focused care or any other term you may want to use.
Managing and supporting those with post-viral fatigue syndromes also means carefully and compassionately explaining and reassuring them about the unpredictable and multifactorial nature of their symptoms and how many physical, psychological, environmental, and societal factors can affect them. It also means being empathetic, understanding but most importantly being honest and optimistic about the condition and prognosis which is that symptoms should get better over time, some may take longer than others, but there are things you can do to help.
For more on self-management with Long COVID check out this awesome FREE resource from PainToolKit.org here.
Chronic Fatigue and Chronic Pain
After reading a fair bit on post-viral syndromes these last few weeks I see a lot of similarities between chronic fatigue and chronic pain. Although different in presentations and symptoms they are both multifactorial, multidimensional, highly individual, complex conditions, that have both physiological and psychological components (ref). They both also often have no clear diagnosis or prognosis, with no clear definitive tests, scans, or objective markers, and often no clear reliable signs or symptoms, and of course no clear treatments.
Another similarity between chronic fatigue and chronic pain is that there is a lack of recognition, understanding, and social support around them both, with unfortunately a lot of stigmatism and prejudice also surrounding them both. This often produces a lot of mistrust, anger, frustration, and resentment in those who suffer from either.
One final thing I would like to discuss about both chronic fatigue and chronic pain is how there is also so much easily accessible, poorly controlled information, speculation, conjecture, and hypothesising around them which I think has the very real potential for negative cognitive priming to occur and affect individuals symptoms and prognosis.
Cognitive priming is a well-researched phenomenon in which words, pictures, and conversations have been shown to enhance an individual’s perceived intensity of their symptoms and behaviours (ref, ref). The mechanisms of cognitive priming are complex and highly individual and in no way mean or imply that an individual’s symptoms are not real or genuine, just that they can be affected and altered both positively or negatively by information you receive and assimilate.
I know this only too well with my own feelings of fatigue, anxiety, and depression recently being hugely affected by the information I read and conversations I have to know that cognitive priming affects us all in many ways. Again I want to stress that I am in no way, at all, in any shape or form, denying that symptoms are real, faked, or made up, just that they can be affected by what we see, hear, and read, and at the moment there is so much on Long COVID everywhere.
However, in my opinion, a lot of this information on Long COVID in the scientific journals, news, and of course social media is confusing, contradictory, speculative, and often pessimistic, downbeat, and negative. Even some of the official sites and support groups are full of rumours, speculations, fears, reluctancy and hesitancy, which I can understand given the current situation, but which also, in my opinion, can be negatively priming many with Long COVID symptoms and could be harmful and detrimental to their progress as highlighted in this recent article here.
So that was my brief review of Long COVID, physio and exercise. As I said at the start I have only just scratched the surface and there are still many unknowns and uncertainties. I understand that this can be confusing, upsetting, and frustrating if you are experiencing Long COVID symptoms currently, especially if you have experienced prejudice, disbelief, scepticism and stigmatism by those who don’t understand it, and I apologise for their ignorance and behaviour!
My advice is to please try and ignore these people and try and stay positive, take things slowly and steadily, and focus on one day at a time and progress will follow. Also please try to be patient with yourself and others, particularly some of us healthcare professionals who do genuinely do want to learn more and try and help support you, but who will also make mistakes and errors along the way.
And finally, my last words are to all the healthcare professionals clinicians who may be reading this, please recognise that we actually know very little about Long COVID and post-viral syndromes, so please don’t think that there is a best way to help someone with it. Instead listen to your patients more, respect and trust what they tell you, and you won’t go too far wrong.
As always thanks for reading
For more info on Long COVID and physiotherapy see this site here
For a FREE online introductory tutorial on Long COVID please see Physiopedia.com here
For more info on CFS/ME and physio see this site here