By David Tuller, DrPH
The Journal of Orthopaedic & Sports Physical Therapy recently published an editorial called “Humility and Acceptance: Working Within Our Limits With Long COVID and Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome.” The editorial emerged from a collaboration between rehabilitation specialists and patients, mostly from Canada. It confronts the conundrum of whether those experiencing what is called Long COVID should be advised to exercise, explicitly linking the issue to the history of misguided interventions for ME/CFS and the symptom of post-exertional malaise.
It is indisputable that people can become deconditioned during post-viral convalescence, to a surprising degree. Thirty years ago, a bout of bronchitis that lasted a couple of weeks left me exhausted and winded for what seemed like months. I was shocked at how debilitated I was. And as I gradually regained my strength, I gradually did more and returned to my former level of fitness. I didn’t need a rehabilitation program, other than some initial reassurance from my doctor that what I was experiencing was well within the parameters of a normal recovery.
The presumption behind the recommendation of graded exercise therapy in ME/CFS is that patients are deconditioned the same way I was post-bronchitis. Yet they get stuck in that phase because they mis-interpret their symptoms as arising from something more insidious and dangerous—specifically, underlying pathophysiological processeses–and spend too much time in bed. Within this framework, a program of slow increases in activity has been posited to lead to improvement and full recovery from ME/CFS.
Simon Decary, the lead author of the JOSPT editorial, is a physiotherapist and assistant professor of rehabilitation at the University of Sherbrooke, in Quebec. I asked him about his interest in this area and how the editorial came about. He began working with hospitalized COVID-19 patients last year, he said, and then became involved in efforts to develop rehab programs with an exercise-based approach.
During that process, he was contacted by ME/CFS and Long COVID patients who explained to him about the symptom of post-exertional malaise. He reviewed the PACE trial and related research and recognized that it provided a deeply flawed body of evidence. Here’s what he said:
“I took the time to read everything that was sent to me about PACE etc. As a researcher in patient-centred care, I was and still am traumatized by what I read. A small group of clinicians realized that our colleagues were doing nonsense with patients all over again and that the evidence could not keep up with the speed at which clinicians were implementing exercise-based therapy. So we asked patients to design the safety message: “What would you have liked to know at the beginning of your disease that you “think could have prevented at least some disabilities?” This is how the editorial came to be.”
Here’s a key passage from the editorial:
Postexertional malaise manifests as an abnormal physiological response to physical or cognitive exertion. It can be triggered after a daily activity, such as a shower, and result in a severe combination of flu-like and neurological symptoms and crushing fatigue. In most patients, the onset of PEM is often delayed by 24 to 72 hours, followed by unpredictable se- verity of immune, neurological, cognitive, and gastrointestinal symptoms that may persist for days, weeks, or permanently. Anecdotes of PEM are emerging from people living with long COVID…Clinicians may be promoting a dangerous message that could lead people with long COVID down a path of endless cycles of over- exertion and relapse.
The editorial highlights data from surveys of Long COVID patients in which significant numbers reported deterioration after exertion. To be sure, it is hard to tell from questionnaire whether all of those reporting such difficulty have what is defined in ME/CFS as PEM. But even assuming biases in the data, it is clear that the phenomenon is not unknown among the wave of Long COVID patients. Given that, advising caution in dispensing guidance about exercise is certainly warranted. The editorial recommends pacing and suggests that clinicians monitor patients for PEM using the DePaul Symptom Questionnaire.
One of the infuriating aspects of the whole debate is how those who promote the psychogenic paradigm for ME/CFS treatment—and by extension for Long COVID as well—presume that critics are motivated by a lack of understanding of mind-body interactions and a prejudice against psychiatry. This notion is unjustified and insulting. The research behind the psychogenic approach has been exposed as subpar and the results are not actionable.
It is understandable that those who have invested their reputations and careers in it have trouble accepting what has happened, and why. If they need help in coping, they should certainly seek it out. But public health authorities should not rely on their misguided and poorly designed “science” for solutions. And as this cogent editorial suggests, it is unacceptable to inflict these bogus results on patients seeking legitimate medical care.
Comments
24 responses to “Journal Editorial Calls for Caution in Exercise-Based Rehab Programs for Long COVID”
Dr Decary said, “I was and still am traumatized by what I read…”
Thank you for the blunt honesty. The sharp end of this stick is Hell on Earth. The illness wrecked my health, but it was the medical industry that wrecked my life.
It is simply amazing to me that anyone with a scientific, medical or health background could fail to see the deep flaws so clearly evident in the PACE study & associated published literature.
A total lay-person armed only with an enquiring mind & attention to detail is more than able to identify fundamental flaws that go beyond simple mistakes & jump off the page as amateurish attempts to manipulate the results.
As a former scientist, – now living with severe ME – I am further amazed that the peer-review process so fundamental to accepted scientific process failed to identify glaring issues in experimental design, data collection, & analysis.
I simply cannot comprehend how Peer reviewers let this, & other papers, be accepted.
And one has to wonder why the journals, & their editors, were willing to publish such deceptive ‘work’.
A quick check of the key names involved in this deception reveals a virtually revolving door of the same names either doing the studies, reviewing the work, or publishing the outcomes.
In so doing they have displayed ongoing disrespect for patient wellbeing & scientific rigour.
Untold numbers of patients have been harmed physically & emotionally by the resulting inappropriate treatments which continues to this day; yet the eminence-based ‘science’ continues to be promulgated by health practitioners who have either not read the actual studies, or scarier still, have not understood the many flaws in the PACE trial & related studies.
Berkeley based public health academic & investigative journalist David Tuller is a leading researcher calling this cabal to account; yet PACE-styled Graded Exercise Training & its accompanying Cognitive Behaviour Therapy is still recommended to this day.
If the peer review process repeatedly refuses to reject shoddy ‘science’ then peer review itself must be regarded with suspicion at the least, & perhaps be totally disregarded.
That a handful of ‘scientists’ are prepared to harm patients & tear down fundamental practices of scientific process simply to gain further ‘eminence’ & presumably personal profit also amazes me.
But that the scientific, medical & health professional communities do not stand as one with patients & call out these people & their unethical practices astounds me.
We are all diminished as a result.
The problem for medicine is how do you tell the one set from the other – those who have post-viral deconditioning who might benefit from a programme that supports a gradual increase in exercise from those who would be harmed by it. Unfortunately, the approach in the past has been to deny that patients could be harmed and to slate anyone who says that they have been. This seems to be a quite common reaction in medicine. All sorts of treatment harms have been denied, and harmed patients have had to fight for years or even decades before the truth was finally accepted. (Why, after so many scandals, does the medical profession still find it so hard to listen to and believe what their patients are telling them? Hubris perhaps? )
It’s high time that the medical authorities stop denying that a sizeable proportion of patients get worse with graded exercise and instead start searching for reliable biomarkers that can distinguish these really sick and vulnerable patients from the post-virally deconditioned ones.
jimells says
The illness wrecked my health, but it was the medical industry that wrecked my life.
————
This.
All the doctors refuse my continuous relapses since June 2020. I hope one day they will start to accept this truth and help us.
I think I probably agree with the observations from Sean and Jimells.
This disease has a hellish mind of its own of course, but I do have the sense that iatrogenic behaviours by members who subscribe to the Wessely orthodoxy have led to my present situation which can only be described as ‘existential’.
The ‘local ME expert’ in South Wales back in 2004 was most certainly not expert in anything other than making a bad situation so much worse that I still feel the reverberations, of being shoved full of psych drug after psyche drug for no other reason than said ‘expert’ decided to gaslight me as ‘catastrophising’, to this day.
At that point I had already received a ME diagnosis of sorts but the two UK patient charities existing at that time were not useful in terms of educating patients in a way which could have prevented me from being lured into the clutches of Wessley School devotees. Indeed the charities actually endorsed them by having them present within their magazine pages from time to time. Abuse such as I suffered in 2004 was the biggest kick toward educating myself on what was & is really going on… had I known I could have avoided the mistreatment of that year and what I believe to be the associated continued quickening of the downhill trajectory of my disease, with sensory issues that link to the akathisias which were *generated entirely* by that medication misuse and which have never left me 17 years later.
Curiously I was gaslighted by the local ‘Small Fibre Poly Neuropathy’ expert more recently. A chap I later learned was the sibling of the clinician I first referred to above.
There is some hope in seeing some medics at last grasping this nettle and trying to redress this truly appalling situation. But it will have come too late for many of us, I fear.
Apologies for rambling syntax. I used to have a brain once upon a time!
“The problem for medicine is how do you tell the one set from the other – those who have post-viral deconditioning who might benefit from a programme that supports a gradual increase in exercise from those who would be harmed by it.”
I don’t see this as a problem, at least in people who haven’t been in bed for so long that they need to learn walk again. As Dr Tuller says in the article, those who’re going to recover simply do so naturally.
If someone gradually begins to do more after being floored by a nasty virus and it doesn’t make them worse every time, they will carry on ramping up their activity without anyone telling them to do it.
This is what the BPS brigade has never grasped: no-one wants to be ill. They want to resume doing all the things they enjoy, and as soon as possible.
Fionn said: “This is what the BPS brigade has never grasped: no-one wants to be ill. They want to resume doing all the things they enjoy, and as soon as possible.”
I agree. Their ‘fear-avoidance’ construct is pure strawman as its most insidious. It’s the basis from which all their nonsense is grown. And yet it never bears scrutiny. In fact it’s so seldom that this one fundamental is interrogated. Over the years I have come to know literally hundreds of people with ME. Not one of these people has been afraid of pushing their limitations..not one. I repeat that: NOT ONE.
Fionn said: “I don’t see this as a problem”. I agree that for many people this likely won’t be a problem at all – they will naturally ramp up their activity. But that is assuming that everyone is fit and healthy before they catch a virus. Some may have been struggling with exercise anyway due to other chronic health problems and so may benefit from some individualized physiotherapy to help them at least regain their previous level of fitness.
I had reason to reflect on the deconditioning falsehood again after having a Covid vaccine. Although I was having a good patch (for me) the morning after the vaccine my legs were numb and weak and I was unable to stand.
Comparing what happens with bronchitis or a long spell in bed isn’t the same as the overnight loss of muscle power some of us have experienced with ME .
I am now having to cope with a much lower level of mobility and no idea when and if this will lift. My legs are two heavy weights to drag around and my arms can’t lift or pull me up as they did before.
This is not and has never been deconditioning. Its not a sensitivity to exercise either- which seems to be another current attempt to misrepresent mobility and exertion abnormalities in people with ME.
To make it quite clear, I’m not for one moment suggesting that graded exercise therapy (GET) should be retained in the NICE guidelines (or any other guidelines) for ME/CFS, but there will be post-viral non-ME patients who might benefit from GET who perhaps don’t have the funds to pay for their own personal trainers/physiotherapists. It would be good if doctors had a means of identifying their ME/CFS (or long-covid) patients who are at risk from GET. Assuming that GET is quite rightly no longer part of the ME care pathway, then some non-ME patients could potentially miss out on exercise therapy that could help them if their doctors rely on an overly broad symptom-based definition of ME/CFS. If too narrow a symptom-based definition is employed then some ME patients who don’t appear to meet the criteria at the time (or who are told that they don’t) might be harmed by GET. It would obviously be much better if a biomarker was found that could identify early on which post-viral patients are at risk of harm from GET. That’s all I was saying.
CT in response to your comments. I personally would prefer that no one ever receive GET. Patients can request help from GPs for exercise assistance anytime.
If ME was researched fully a correct diagnosis may be possible. Disease diagnosis may be given to those who suffer similar symptoms but not ME.
I like so many ME patients have become worse due to GET and CBT. Therapists during this treatment imply it’s all in the head; until you ask them outright if that is the basis for the treatment then it is denied. I simply exist, have to take pleasure in the smallest achievement like brushing my teeth, watching some TV and being able to get out of bed. Never judge if you’ve no experience of it. A positive attitude on life and feeling I will beat this has not prevented me from deteriorating to the point I cant work or enjoy hobbies. Other illnesses have followed. I’m luckily not as bad as most.
What happened with my long comment?
EV: I appreciate the appalling harm that has been done to ME patients and was clear above that GET should not be recommended for ME patients. But I maintain that some deconditioned patients, perhaps with other health problems too, could benefit from an individualized graded exercise programme. The problem is – how do doctors tell their ME patients from other patients (who could benefit) BEFORE the harm is done? I don’t think this can be done effectively with symptom-based definitions, that’s why it’s imperative to have well-funded biomedical research into ME to find reliable biomarkers instead. Until that time is reached, I agree that it’s important that doctors exercise caution (and caution about exercise) with all their post-viral patients, but that inevitably means that some non-ME patients may not receive help to regain their previous levels of fitness. I don’t think the ME community will get far trying to convince the medical community that deconditioning doesn’t matter much to health. The argument must be that patients with ME are seriously harmed by GET and they must be protected.
“Patients can request help from GPs for exercise assistance anytime”. Even if that’s the case, that would be to assume that patients will know whether or not they’ll be harmed by graded exercise before they embark on an exercise programme. Most won’t have a clue about the harms that they could suffer until their health worsens. It doesn’t matter whether the doctor or patient instigates the graded exercise programme, the risk to patients is the same. The medical profession has ignored patients who got worse with the recommended treatment, focussing instead on those who improved. (Believing their own positive thinking mantra perhaps?) That must now change – they need to accept that some patients (those with ME) get worse and commit to safeguarding them from harm.
I love the first sentence in the last paragraph!
The thing that is being missed here is that GET risks causing some post viral patients to develop full blown ME who wouldn’t have if they had been advised to rest whilst their bodies needed to recover. I’ve come across plenty of parents with ME who helped their children who got sick to recover by providing them with the space and time to rest completely – and they did recover.
Historically (a long time ago) such patients were given bed rest – a wise move. And we had far less ME as a population! Anyone who has had this condition in a fluctuating form knows that when their body is improving they start to do more as soon as they can and any deconditioning soon falls away. Trying to force the body to do that before it is ready is illogical and unwise.
I wonder how many fewer patients we’d have without this rat race/ push through approach to life that gets pushed onto to the newly sick. Or without GET.
I have long-covid.
(Excuse me for any misspellings, English isn’t my first language.)
I was told I’m not ill. I just THINK I am and therefore I behave as if I am ill, which in turn will make me feel ill.
No. I don’t think I’m ill. That is the whole problem. I think I am healthy so I do what I normally would do. Get up, take a shower, get dressed, make breakfast, wake up the kids, prepare their lunch, send them to school, fill the dishwasher… except… I don’t. I try to because when I wake up I feel groggy but not really sick, I feel I should have slept longer, but otherwise than that, I seem fine.
That is, untill I sit upright, get out of bed and have put on my bathrobe.
Before I have reached the shower, my heart rate has risen from 58 in bed to 130 standing in the bathroom. I just go to the toilet and get back to bed. I stay there for five minutes and I feel fine, so I get up and make breakfast and while I felt OK a few minutes ago, I’m unsure if I will be able to walk back up the stairs without being completely exhausted. But the kids need to get out of bed so I suck it up and climb the stairs. I wake them up, tell them to get dressed and go back to my room to have a rest. My daughter calls out to me, she is missing one of her books for school. I get up to find it for her and while, again, I seemed fine before, I have trouble going through her stuff as reading the covers of her books and picking them up at the same time somehow has become an impossible task. I lack the strength to open up her bag and put the book in so I tell her to do it herself. My kids eat their breakfast while I rest on the couch. I make them lunch, send them off to school amd try to figure out if I should take a nap on the couch, or go back to bed.
I woke up thinking I was fine… and one hour later I’m back to sleep, exhausted, not dressed nor showered… and I haven’t eaten a single bite. Breakfast can wait. I’m too tired to chew on anything right now.
The problem isn’t that we think we are sick, the problem is we think we aren’t. We don’t need to be “motivated to get up”, we need to understand we have to rest between activities.
When I got the flu, I always was deconditioned afterwards. Even from being sick just a few days. I used to excercise to get better. Use my crosstrainer for one or two minutes at a time, and increasing that to fifteen to twenty minutes within a week. It would make me feel fit in no time.
This time, it is very different. I have tried, but even getting myself up on the damn thing is too much.
I didn’t get decondotionned by staying in bed either. I was back to work 24 hours after my fever went down (as was advised in my country). I was tired, but I didn’t feel exactly sick so I just did what I normally do. Or at least I tried. Instead of feeling better, my situation worsened until one day the fevers came back and I was back in bed all day.
Well, you shouldn’t have stayed in bed. It is all in your head. You are not sick.
Then how come I get sicker when I pretend to be OK?
How come my situation improves when I rest (and do very, very light excercise)?
Hanneke wrote: “When I got the flu, I always was deconditioned afterwards. Even from being sick just a few days. I used to excercise to get better.”
This illustrates the very human and very common error that allows the psychobabblers a toehold from which they peddle their defective goods. Hanneke would have recovered from influenza with or without exercise.
Correlation is not causation. Exercise can treat physical injury. Exercise does not treat illness caused by pathogens.
I wish I could find something positive and encouraging to say to Hanneke. I can hardly imagine how difficult it must be to care for children while suffering this awful illness. I am sorry this has happened to their family.
Illness is not a moral failing nor a criminal act. Telling sick people they are not really sick is both.
@jimells
Thank you!
About *quote* “This illustrates the very human and very common error that allows the psychobabblers a toehold from which they peddle their defective goods. Hanneke would have recovered from influenza with or without exercise.”
You may well be right, maybe I would have recovered from influenza without exercise, but it is what I have done intuitively for a long time. Maybe it didn’t “fix anything”, but at least it made me feel better so that’s a plus.
Now when I tried that after covid, I failed miserably. My symptoms increased dramatically after I tried to just pick up normal life like I have always done.
Now that I know what is not working, I know the approach should be to slow down before I reach my limit (in every way possible) and to gently increase activities when possible, avoiding exertion.
I have seen people make significant improvement over time when they stop rushing things and start listening to what their body is telling them.
I am hopeful to make the same recovery but I’ll take anything this weird life throws at me…
Hi!
Have you seen this piece yet:
https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(21)00211-5/fulltext
Lancet describes it as a “post acute effects of SARSCoV2 infection”-study, on almost 9000 Danish residents, but an associate professor in Public Health at the Uni. of Southampton, Dr Nisreen Alwan, calls the labeling misleading:
https://twitter.com/Dr2NisreenAlwan/status/1392078286461751297
I’d love to read more about your views on this, if you get the time to dive into it.
Isn’t it conceivable that patients are likely to become deconditioned as they rest to recover from viruses and that some of those patients, for reasons other than an ME/long-covid type of illness, may not be able to recover their original levels of fitness as easily as others and would benefit from help from physiotherapists?
CT wrote, “Isn’t it conceivable that patients are likely to become deconditioned”
Certainly it is conceivable. But where is the evidence? Psychobabblers don’t even have a definition for “deconditioned”. They don’t measure it. They don’t tell us how to decide when a person is “deconditioned”. The word is all-purpose and means whatever the BPS promoter wants it to mean. Kinda like “stress”, “functional”, etc.
If PACE trial proves anything, it is that *no one* benefits from exercise as treatment, no matter which crazy cohort it is tried on or how heavy one’s thumb is put on the scale.
I’m all for resting, and bed rest if that’s what your body is telling you to do, but I wouldn’t deny that muscles waste through lack of activity. I’m sure that many people (who don’t have post-viral illness) can, after taking time to rest and recover, naturally increase their activity and find their way back to fitness on their own. But there are others who might really struggle to, especially if they have other health problems, and help via a gentle graded exercise programme, could really benefit them, I think. If people can be offered physiotherapy after they’ve been laid up following surgery, then why not after they’ve been laid up with a virus?
I have had M.E since 1979. I started a diary back then to log my experience of my M.E. l was told by Dr’s to get on with my life, that my illness was all in my head.l remember one Dr laughing at me when l explained the pain l had when walking. So l pushed myself to go back to work. l was in the prime of my life, l so wanted to believe l wasnt ill, that the Dr’s were right, that it was all in my head… l wanted my life back. Within a short time l became totally bedbound. All of the 1980’s is a blur. l don’t remember anything as l couldnt do anything other than struggle to the bathroom. My husband became my full time Carer. l had remission in the 90’s & went back to College on Pre Nurse Course, l relaspe within a short time. l never again recovered .So my Dr’s sent me to a Neurologist who said l had severe M.S type symptoms. All tests came back negative , , so l asked to see a M.E Specialist . The Neurologist didnt know one, it took her 2 months to find one . l was dx as Severe M.E by a top Infectious Disease M.E Specialist , 20 yrs ago.. l was 30 yrs old when l became ill, i’m now 70 and still bedbound, l wonder what numbers have this story. Millions ? Is the data collected ? No.!! So l still write my diary of my M.E experience, and l will never forgive those Dr’s who still dont believe us, who say all we need to do is ‘think’ ourselves well and just do gradual exercise. l will never, ever ,forgive them.