A friend of mine who has been dealing with long covid for over two years now expressed her frustration on social media, yesterday, about the fact doctors persist in prescribing graded exercise for their recovery plan. Its a tricky topic because I know, from many years contending with fibromyalgia and chronic fatigue syndrome, that exercise…the very thing you might expect to help with recovery from physical injury…can very-much make things worse. She says:
“One of the things not yet widely enough understood about ANY version of long Covid, even mild lingering symptoms, is the potential for graded exercise therapy (GET) to make someone worse and potentially worsen their long-term baseline.
Doctors who are not yet up to speed and have not treated many patients with LongCovid often recommend exercise, increased exercise and graded exercise (GET) to help their patients recover.”
This doesn’t surprise me but it does frustrate me as the medical advice is still wayyyy behind what people with chronic conditions have come to know about their own bodies, and there is still very little cross-over of the two pools of information.
While the wrong advice continues to be rolled out, people are being taken off-track because they may not get worse straightaway…but often get sicker over time, as a result of it being the first line of approach, as she experienced for herself.
Respected fibro/CFS blog Health Rising (link below) announced, in 2020, that National Institute for Health and Care Excellence (NICE), the executive branch in the UK responsible for producing treatment guidelines, was finally reconsidering its guidelines for ME (ME/CFS, chronic fatigue syndrome), especially regarding the graded exercise (GET) approach:
“It appears to be a repudiation of the wrong-sighted and even, at times, cruel practices that have been foisted on ME patients in the UK for years. Of course, it’s too late for the people pushed to the edge and beyond by a system in denial.
The unremitting focus the UK and the Netherlands have had on GET has, of course, affected more than the patients in those countries. It’s cast a pall over the entire ME/CFS community and the field itself. Even in the U.S., where research efforts have remained overwhelmingly biological, the taint remained in the form of popular medical websites espousing these practices”.
The article continues:
“There’s also been the loss of faith in the medical community itself. How is it that it could put so much emphasis for so long on practices that were so at odds with patients’ experience? Who among us, after all, did not wreck ourselves physically trying to maintain our careers and lifestyles? Who among us did has not tried again and again and again to “exercise”?”
What about long covid, which has appeared mostly since that time? Well, researchers at the University of Leeds have found it necessary to warn that the fact that some health care professionals are recommending patients should gradually increase their physical activity levels could result in symptoms getting worse. They emphasise that patients should be encouraged to “pace” their return to exercise, doing enough to stay within their energy reserves so as not to cause a flare-up of symptoms. In an article in the International Journal of Environmental Research and Public Health, the researchers said that although physical activity is likely to play a part in helping people to recover from long covid, there is a delicate balance to be found between doing too much and not enough. In their survey, the vast majority of respondents (75%) reported that physical activity made their symptoms worse, 20% said physical activity sometimes improved symptoms and sometimes made symptoms worse, 1% noted it improved them, with the remainder noting it had no effect on symptoms (The Relationship between Physical Activity and Long COVID: A Cross-Sectional Study).
Thankfully, as I have largely “gone it alone” across all the many years I have been dealing with chronic conditions, I haven’t been subjected GET and the one time a fibro consultant tried to prescribe that I start attending their special gym for the purpose, I listened to my gut instincts and quietly disappeared.
Over the years I’ve come to realise, from direct experience and research, that the adverse effect seems to be two-fold (though perhaps versions of the same thing). One is that the family of conditions including fibromyalgia, CFS/ME and long covid (and I do believe they are closely related) seem to adversely affect the performance of the mitochondria, sometimes going as far as messing with the process of glycolysis to the point that energy production flips to an “anaerobic” rather than an “aerobic” mechanism, at least some of the time. A long struggle with excessive lactic acid production and severely cramping muscles pointed me at this effect, which is explained in detail by Dr Myhill in an article on her website and which I have written about before.
In these chronic cases, it seems that the body “can’t make ATP quickly enough to shunt lactic acid back to acetate (via the Cori Cycle Please see Wikipedia entry on the Cori Cycle) and the sufferer is completely pole axed by ongoing lactic acid burn with inability to move and possibly secondary damage from lactic acid which, for example, is good at breaking down the collagen matrix which holds cells together” (Dr Myhill). The body only, usually, calls on aneorbic energy production during, say, the last few hundred metres of a race, which is why cramp so-often sets in to the leg muscles (caused by a temporary build-up of lactic acid) but, with these conditions, this can happen even from turning over in bed or changing position on the sofa, on a very “bad” day, especially if the body is feeling otherwise triggered and then the lactic acid effect can linger there, causing all sorts of problems that cascade out of control the more often they are triggered.
Since brain and body are so minutely connected, behind the scenes, the multiple outcomes of this sort of systemic disarray can be unfathomably complex so that you hardly know which symptoms to try to tackle first (even as people around you start to think you are exagerating all the bizarre nd apparently unrelated effects). All of this seems to be the outcome of a mind-body loop that thinks all exercise is a call for handling some sort of an emergency.
In support of a theory that GET may be equally inappropriate for long-covid (which is not my area of direct personal experience) “several recent studies are finding that patients with long COVID may have compromised mitochondrial function as a result of infection with the virus” (this in an article entitled “I’m an Olympic Athlete. Due to Long COVID, Now I Struggle to Walk Up a Flight of Stairs”).
The other effect (really the same thing, this time with the result that the body goes into the kind of swoon that it might go into if it thought that all hope was lost and is about to be eaten…) is that exercise can easily trigger the fight, flight or freeze response in the body, even when there is only the slightest increase from a previous level of strain, resulting in symptoms such as deepest fatigue from very little exertion, or even total chaos of the autonomic system, with extremely widespread and abitrary outcomes (such as PoTS and other forms of dysautonomia). This can happen even if you are mentally invested and want to increase that exercise or do the thing that is more physically demanding (since this loop in the brain is deep inside the lymbic system, way out of sight). Its as though the mitochondrial effect is the “fight-flight” part and chronic fatigue and dysautonomia, plus all sorts of abitrary gastrointestinal effects, etc, are the “freeze” part of the process and the body can endlessly cycle between these phases, or overlap them all at once, on endless repeat if you push yourself too hard from now on!
Therefore the very effect of constantly amping up the exercise or trying to do more can throw the mind-body system into an endlss loop of crashing back into the worst kind of symptoms or set it back to a much earlier stage in the recovery process. To those tempted to say “just try a little harder” or “its all mind over matter”, let me say, catagorically, that it really isn’t and you can’t just buck up and think your way out of these conditions, nor are the effects imagined…they are very starkly real and debilitating in ways that are hard to describe to people that have never experienced them!
In fact, even “overdoing things” very sightly can have this effect, a reality I live with daily, even these many years later. Only recently, I have watched my body “crash” several times from the mere fact of doing something enjoyable but different, going away for a couple of days or doing tasks I’m fully invested in and which I feel physically capable of doing at the time yet it is in all the days or weeks afterwards that the piper demands to be paid, with interest.
For instance, I painted the walls of my room just the other day and felt just fine and dandy while I was doing this, not pushing or reaching too hard or too far, pacing myself throughout but there is always that exagerated after effect and the need to stop everything to recover…since its often not during the exercise that the body indicates that it is struggling with this new level of activity but in the follow-up (so, if anything, the need is to grade the exercise downwards for a while). Therefore, changing up your routine can come up at a cost and you have to approach all physical exertion with pacing and caution, which is not the same as fearing it (anything but that) but a case of staying mindful and present with the body when it asks you to slow down or stop.
As my friend points out “Many people who have lingering symptoms after Covid do not think it’s any big deal. Then they start pushing trying to do their regular stuff. Get worse, and end up in the patient group I’m in months later, much worse than they were after their initial illness”. Yes, these are wise words of caution that I am sharing with any friends and family with lingering, even mild, symptoms of covid and its up to them whether they decide to listen (since most people seem to want, or feel pressured, to get back to “normal” just as quickly as they can).
As such, when you have these conditions, life can seem like a constant and frustrating “up-and-down” yoyo and no amount of pushing through exercise or trying to claw back your normal life is going to recover you back to you previous level of fitness and resiliency; you need to go in to things softly for the time being. Believe me, I have tried this several times over the past 17 years. There was a time I even tried to spark my body back to life by joining a vigorous dance class (I love to dance and thought this might “jolly” me back to my health; a product of the fact its so natural to become so frustrated with these long-running conditions, desperately wanting to reboot your health and reclaim some vigour). I tell you this, not because it was such a bad idea for me (it was, I left after 6 weeks, having thrown myself into a total tailspin) but because there was another woman there, recently diagnosed with fibromyalgia, who had been “prescribed” this class by her doctor. Her aim was to be ready to run a half-marathon within 6 months. I have no idea how she fared as I left shortly afterwards…
The way forwards, in my experience, is always softly softly and, in fact, this is the approach recommended by The Gupta Program (a program for recovery from chronic illnesses). Gentle and fairly short daily walks are encouraged, if at all possible, even if those walks involve a lot of stopping to look at the view. You never “push through” a flare-up but listen to the call to stop or slow down (and coming to accept this new normal is part of the healing process; a tough one for alpha-achiever types but there it is, there really is no choice) so on days when you simply can’t, you don’t. There are many life lessons in all this; learning patience, self-compassion and the subtle art of slowing down to smell the roses are just some of them!
The Health Rising blog above also points out a faulty premise that has been leaned into as an excuse for recommending GET: “that deconditioning was keeping people with chronic fatigue syndrome (ME/CFS) down. It’s not that deconditioning is not present in some people with ME/CFS – of course it is. Deconditioning will occur in anyone who is bedridden for a period of time”. GET practitioners had been proposing that “deconditioning was behind ME/CFS patients’ inability to exercise”, in which case “a slow ramp-up of exercise (i.e. a graded exercise protocol) was just the ticket”. However a study by Visser/Van Campen/Rowe in 2018 “definitively demonstrated that not only was deconditioning not causing the energy production problems in ME/CFS – it didn’t even appear to be impacting them “ (Health Rising, link to article below).
Deconditioning can be a real problem, worsening the longer you remain unwell and fairly sedentary, as I have talked about many times before (and as agreed above by Health Rising) but if it is not the cause of the symptoms then the protocol for tackling it has to be quite different.
I have found, as I shared in my post the other day, that qigong is a form of “exercise” that my body can tolerate really well, as a means of reconditioning the body by keeping it upright and moving in a gentle way so I encourage you to cautiously sample it (I use Steven Washington‘s online classes and find them perfect for rehab). Certainly, my PoTS symtoms have all-but disappeared since I started (and I was of the belief that my deconditioned physical state, along with worsened laxity issues to do with hypermobility, had triggered my PoTS for the 18 months or so that I had this the worst). I think this is partly because it is so gentle and soothing, so the fight, flight or freeze response does not get triggered so readily (or, at least, I can’t imagine that it would); in fact, to me, it feels less and less likely with each day that I practice since it reboots the nervous system as you move (and keeping moving is just so important). Also because it is moving energy around at the subtlest as well as the most overt level so that it almost, as it were, bypasses the brain loop that feeds into the glycolosis process, or at least confounds it away from thinking there is some sort of emergency or crisis in the body needing to be handled so urgently (running away from a tiger…) that anaerobic energy production is called for, or that causes you to fall into a dead-swoon. That’s just my theory!
Since starting qigong and, steadily, across all the years I have kept to my daily walks and done some yoga, even gentle movement to music at home (no more classes!) I have made steady improvements in my physical resilience but strongly suspect I won’t ever be able to “over do it”, without consequences, again. I also eat really well and take a good range of antioxidants and other supplements to support ATP production, clear away free radicals and keep my energy-making processes and nervous system as encouraged as possible, every day, but especially if I am under any extra stress. In time, you learn your own benchmarks, your best help aids (which won’t be identical for everyone) and what you can get away with and, of course, you can hope to steadily improve; just don’t be in any rush about it!
Referenced article on Health Rising: GET This! NICE Pulls the Plug on Graded Exercise Therapy and CBT as Treatments for ME/CFS
Disclaimer:This blog, it’s content and any material linked to it are presented for autobiographical, general interest and anecdotal purposes only. They are not a substitute for medical advice, diagnosis, treatment, or prescribing. This article does not constitute a recommendation or lifestyle advice, nor do I profess to have medical knowlege or training. Opinions are my own based on personal experience. Please seek medical advice from a professional if you are experiencing any symptoms or before you change your diet, your nutrients, your supplements, your habits or anything else.