Discretionary exercise for the sake of it is way off topic for people who have to pace activity of daily living.
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Practical Recommendations for Exercise Training in Patients with Long COVID with or without Post-exertional Malaise, 2024, Gloeckl, Scheibenbogen+
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rvallee
Senior Member (Voting Rights)
I don't see the point in applying generic advice to specific problems. People should drink water when they're thirsty and eat good healthy food. Not for any particular reasons. They should also breathe oxygenated air that is as little polluted as possible, but not everyone has that luxury.
None of this will have much of an effect on most illnesses, unless there are specific problems related to that, such as dehydration or malnutrition. But this makes as much sense as trying to find the right advice to exercise out asthma in highly polluted air.
This isn't much different than advising people to have basic hygiene. What good does that do about specific problems unless they're brought on by a significant deficit in hygiene?
More than anything all this does is allow medical professionals to not do their job, in fact to neglect many problems. Can't help here? Just give generic advice, something a stack of pamphlets resting on a sack of potatoes can do. It's just so lazy and counterproductive. It even turns problems individuals had nothing to do with into moralistic crusades that privatize a social problem.
But more than anything, the idea of trying to fix a deficit of energy by a greater expenditure of energy is just brain-dead. It's like spending more money to fix a budget deficit. That can make sense in some very specific circumstances, such as a company investing in R&D or new equipment, or a government working on an industrial policy, but none of this applies here. This is as wasted as people who keep comparing personal budgets to government budgets, it's just a deep misunderstanding of the nature of the problem, met with a lazy generic solution that ignores the problem.
How many angels can dance on a hairpin and what cool dance moves should they do? Let's discuss for several decades while millions of lives go wasted. This is the ultimate in smart people obsessed with foolish nonsense.
Edit: additionally, the idea that MDs will be able to handle the nuance necessary to do this right has been completely exposed as a delusional fantasy over the last several decades, it will never happen, they simply do not have the tools, skills or time to do any better than the traditional "just exercise, there's nothing wrong with you" in all but a few rare exceptions
None of this will have much of an effect on most illnesses, unless there are specific problems related to that, such as dehydration or malnutrition. But this makes as much sense as trying to find the right advice to exercise out asthma in highly polluted air.
This isn't much different than advising people to have basic hygiene. What good does that do about specific problems unless they're brought on by a significant deficit in hygiene?
More than anything all this does is allow medical professionals to not do their job, in fact to neglect many problems. Can't help here? Just give generic advice, something a stack of pamphlets resting on a sack of potatoes can do. It's just so lazy and counterproductive. It even turns problems individuals had nothing to do with into moralistic crusades that privatize a social problem.
But more than anything, the idea of trying to fix a deficit of energy by a greater expenditure of energy is just brain-dead. It's like spending more money to fix a budget deficit. That can make sense in some very specific circumstances, such as a company investing in R&D or new equipment, or a government working on an industrial policy, but none of this applies here. This is as wasted as people who keep comparing personal budgets to government budgets, it's just a deep misunderstanding of the nature of the problem, met with a lazy generic solution that ignores the problem.
How many angels can dance on a hairpin and what cool dance moves should they do? Let's discuss for several decades while millions of lives go wasted. This is the ultimate in smart people obsessed with foolish nonsense.
Edit: additionally, the idea that MDs will be able to handle the nuance necessary to do this right has been completely exposed as a delusional fantasy over the last several decades, it will never happen, they simply do not have the tools, skills or time to do any better than the traditional "just exercise, there's nothing wrong with you" in all but a few rare exceptions
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Something I've been wondering about: are the supposed benefits from exercise linear? Does walking 40 minutes a day provide double the benefits as 20 minutes, and walking 400 minutes (6.7 hrs) provide 10x the benefits? Are the benefits really non-linear, with a minor amount of exercise providing a lot of benefit, with more exercise providing little additional gain until some threshold is reached to provide further gains? It's hard for me to measure benefits, but my experience is that I can do a lot of extra physical activity for months without noticing any improvements. I typically do a 45 minute walk daily "for my health". What level and duration of exercise would be needed to notice an improvement?
For PWME, this matters because there might be a fairly minor level of activity that is enough to maintain basic body functions. Most exercise research has probably focused on healthy people trying to build muscles or lose weight, and thus isn't applicable. If studies haven't been done on the truly minimal level of exercise needed to maintain health for people with limiting medical problems, that would be worthwhile research.
For PWME, this matters because there might be a fairly minor level of activity that is enough to maintain basic body functions. Most exercise research has probably focused on healthy people trying to build muscles or lose weight, and thus isn't applicable. If studies haven't been done on the truly minimal level of exercise needed to maintain health for people with limiting medical problems, that would be worthwhile research.
What is found in the general guidelines of "150 minutes of moderate activity a week/30 minutes a day" is that more is better, and that there is a linear relationship (up to some point).
rvallee
Senior Member (Voting Rights)
I noticed studies and headlines about this over the last few years and it's all over the place, there is zero consistency in anything.
One day you can read about a study saying one thing, the next week the opposite, the next week it's about how no amount of exercise can make up for sitting 8 hours per day, then a few days later about how all that's needed is 15 minutes per day 3x per week and you can slouch the rest of the time, then another saying how 5 minutes of high intensity once per week, then another it's low intensity but regular, and on and on and on.
It's as bad as dietary advice that flips and flops back and forth saying eggs are good, no eggs are bad, actually they're good if you don't eat too much, or maybe you can eat as much as you want.
The entire process of clinical studies that can't fully isolate one variable is essentially a worthless industry that will never serve any other purpose than to employ people who run clinical studies for the sake of getting funding and publishing papers.
PhysiosforME
Senior Member (Voting Rights)
I believe that the greatest gain from protective health benefits of exercise (in the general population) are when sedentary people start to do something. As you correctly point out exercise research is focused on healthy people and looks at it with a deconditioning focus. We have spent so much effort on convincing people of the risk benefit of exercise whilst we still need to acknowledge exercise can sometimes cause harm - it felt like a small victory that we were able to get a statement into this paper through our work with Sport England https://bjsm.bmj.com/content/56/8/427 - 3rd paragraph in the discussion section "A limitation in the scope of this statement is that the list of medical conditions covered is not exhaustive. For instance, we do not include chronic fatigue syndrome and long COVID-19 since evidence on physical activity risk is limited and actively evolving in these areas. We cannot be sure that our symptom-specific statements translate effectively to clinical practice and subsequently to people living with these conditions".
Kitty
Senior Member (Voting Rights)
As I understand it, at least some of the proposed benefits are longer term. They're more about reducing the kind of risks that can begin to manifest from late middle age onwards than getting or feeling fit in the short term.
The most obvious short term benefits are probably a sense of wellbeing and balance, and improved sleep—at least in healthy people. Obviously it can result in the precise opposite in pwME.
This.
I know of no mainstream medical treatment that does not have potential side-effects, even when administered perfectly.
Very important question. The long-term follow-up results for PACE suggest strongly to me that the APT and SMC arms were on a better trajectory for sustained long-term benefit than the GET and CBT arms.
From Todd Davenport on X
Exercising in Long Covid is the source of a lot of discussion on here because we know about a subset people with the disease for whom exercise may be harmful. I have been looking this figure for the past 3 days. There are some issues I'd like to point out. sportsmedicine-pen.springeropen.com/articles/10.11…
First, the presence of PEM is a(n absolute or relative) contraindication to physical exercise (depending on many factors). So, the top two boxes of the chart don't make sense together because ruling out contraindications to physical exercise would necessitate ruling out PEM.
Second, I really appreciate the consideration of PEM and PEM staging because I think they do matter. Defining these stages based on the DSQ-PEM may not be valid because the tool was not set up to do this. It is best positioned as the start of a conversation, not the end of one.
There are plenty of PEM staging tools already out there in the literature. Here are guidelines from NICE. Note the vast range of mild/moderate, which are combined in the chart. The DSQ-PEM guidance may not adequately represent the range of disabilities. nice.org.uk/guidance/ng206…
These guidelines are from the International Consensus Criteria for ME. 50% reduction in pre-illness activity levels is required for mild. Moderate is housebound. These levels don't belong together in patient stratification for clinical decision-making. ncbi.nlm.nih.gov/pmc/articles/P…
If you've followed this account for any length of time, you'd know that as a physiotherapist and exercise scientist, I love me some exercise testing. So, the recommendation for maximal testing (CPET? ) should be super-exciting. But, in a plot twist, here's why it's not.
Say you have Long Covid but no contraindications to exercise including no PEM. I don't really need data from an exercise test to start you on an exercise program and proceed cautiously, monitoring for signs and symptoms of PEM. It can be a very simple, low-tech clinical approach.
It's the people who have exercise intolerance that actually need the testing to find out why they can't exercise. The mild/moderate PEM group (already very impaired) might benefit the most from exercise testing to determine the underlying pathophysiology preventing exercise...
...including potentially submaximal exercise dysfunction like low VO2, work rate, and heart rate, combined with assessing signs and symptoms. It's in this population we want to know if they can reproduce an exercise test, taking careful measurements in the post-exertional state.
Contrary to the recommendation in the figure for mild/mod I am least comfortable throwing out an exercise program to folks who are mild/moderate without test data because I don't know about metabolic, cardiac, and respiratory performance underlying mild/mod functional impairment.
I like the recommendation for introducing pacing for severe impairment secondary to PEM but I think it should be extended to mild/mod too. I also agree that exercise testing isn't a good idea for people in severe PEM. In an ideal world, maybe that recommendation can be followed.
And I like the idea of introducing the idea of PEM and pacing for people who do not report PEM, because it turns out the best way to discover PEM is to start an exercise program. Knowledge is power. If people know the signs they can always stop their program and consult me again.
I know the authors consulted an international group of experts for this project (and I wasn't one of the experts), but I have to say that it seems the exercise recommendations for mild/moderate would be too hard for those fitting the more standard definitions I shared upthread.
In PEM, physiological systems that normally can accommodate loading and overloading have a questionable ability to adapt. We can't simply ask our patients to balance exercising against doing desired activities in the presence of a fixed budget of energy. x.com/sunsopeningban…
A clinician asking a patient living with PEM to pace on one hand and exercise with the other is usually the living embodiment of the expression "robbing Peter to pay Paul." Worse, we are asking the patient to do less of what they want/need to do in service of an exercise program.
If you've ever lived on a budget, you understand this idea. You have a fixed amount of money. Things like paying a financial adviser might be a fine a choice, but it takes away from basic stuff like buying ramen noodles. Most people have to prioritize based on their own budgets.
Once you realize that PEM is a disease of energy limitation that comes with a limited capacity to respond to overloading, that leads to understanding the body also doesn't respond to well-meaning overload using exercise to stimulate physiological adaptation that may not happen.
So sayeth one of the 'exercise people' of the medical system.
Exercising in Long Covid is the source of a lot of discussion on here because we know about a subset people with the disease for whom exercise may be harmful. I have been looking this figure for the past 3 days. There are some issues I'd like to point out. sportsmedicine-pen.springeropen.com/articles/10.11…
First, the presence of PEM is a(n absolute or relative) contraindication to physical exercise (depending on many factors). So, the top two boxes of the chart don't make sense together because ruling out contraindications to physical exercise would necessitate ruling out PEM.
Second, I really appreciate the consideration of PEM and PEM staging because I think they do matter. Defining these stages based on the DSQ-PEM may not be valid because the tool was not set up to do this. It is best positioned as the start of a conversation, not the end of one.
There are plenty of PEM staging tools already out there in the literature. Here are guidelines from NICE. Note the vast range of mild/moderate, which are combined in the chart. The DSQ-PEM guidance may not adequately represent the range of disabilities. nice.org.uk/guidance/ng206…
These guidelines are from the International Consensus Criteria for ME. 50% reduction in pre-illness activity levels is required for mild. Moderate is housebound. These levels don't belong together in patient stratification for clinical decision-making. ncbi.nlm.nih.gov/pmc/articles/P…
If you've followed this account for any length of time, you'd know that as a physiotherapist and exercise scientist, I love me some exercise testing. So, the recommendation for maximal testing (CPET? ) should be super-exciting. But, in a plot twist, here's why it's not.
Say you have Long Covid but no contraindications to exercise including no PEM. I don't really need data from an exercise test to start you on an exercise program and proceed cautiously, monitoring for signs and symptoms of PEM. It can be a very simple, low-tech clinical approach.
It's the people who have exercise intolerance that actually need the testing to find out why they can't exercise. The mild/moderate PEM group (already very impaired) might benefit the most from exercise testing to determine the underlying pathophysiology preventing exercise...
...including potentially submaximal exercise dysfunction like low VO2, work rate, and heart rate, combined with assessing signs and symptoms. It's in this population we want to know if they can reproduce an exercise test, taking careful measurements in the post-exertional state.
Contrary to the recommendation in the figure for mild/mod I am least comfortable throwing out an exercise program to folks who are mild/moderate without test data because I don't know about metabolic, cardiac, and respiratory performance underlying mild/mod functional impairment.
I like the recommendation for introducing pacing for severe impairment secondary to PEM but I think it should be extended to mild/mod too. I also agree that exercise testing isn't a good idea for people in severe PEM. In an ideal world, maybe that recommendation can be followed.
And I like the idea of introducing the idea of PEM and pacing for people who do not report PEM, because it turns out the best way to discover PEM is to start an exercise program. Knowledge is power. If people know the signs they can always stop their program and consult me again.
I know the authors consulted an international group of experts for this project (and I wasn't one of the experts), but I have to say that it seems the exercise recommendations for mild/moderate would be too hard for those fitting the more standard definitions I shared upthread.
In PEM, physiological systems that normally can accommodate loading and overloading have a questionable ability to adapt. We can't simply ask our patients to balance exercising against doing desired activities in the presence of a fixed budget of energy. x.com/sunsopeningban…
A clinician asking a patient living with PEM to pace on one hand and exercise with the other is usually the living embodiment of the expression "robbing Peter to pay Paul." Worse, we are asking the patient to do less of what they want/need to do in service of an exercise program.
If you've ever lived on a budget, you understand this idea. You have a fixed amount of money. Things like paying a financial adviser might be a fine a choice, but it takes away from basic stuff like buying ramen noodles. Most people have to prioritize based on their own budgets.
Once you realize that PEM is a disease of energy limitation that comes with a limited capacity to respond to overloading, that leads to understanding the body also doesn't respond to well-meaning overload using exercise to stimulate physiological adaptation that may not happen.
So sayeth one of the 'exercise people' of the medical system.
Jonathan Edwards
Senior Member (Voting Rights)
So where on earth does that idea come from.
Why should any of these people need an exercise programme?
With friends like this...
I took that to mean if someone has long Covid and is consulting a clinician, perhaps because they get breathless when walking, and are worried about restarting sports or other vigorous activity, then it may make sense to advise them to increase activity gradually rather than diving straight in. That way they find out whether they start crashing when they increase, or don't have any PEM problems.
I agree with his saying the mild/moderate PEM group should be pacing, not doing exercise programs, and I particularly appreciate this bit:
It is daft to ask people with already limited capacity for exertion on activities of daily living to add an exercise program.
Jonathan Edwards
Senior Member (Voting Rights)
But he said 'start you on an exercise programme'. All that needs to be said to people whether they have PEM or not (because some may turn out to have PEM later) is just take things easily and don't try to make yourself better with deliberate exercise. Someone convalescing from any illness does not need an exercise programme. They need to take things gradually and do exercise if they want to when they are well and find it doesn't upset them.
There is an obsession with exercise. All you need to do to maintain health is go for a decent walk fairly regularly. If you enjoy doing more that may have long term benefits but that is less clear. But it has nothing whatever to do with having had a recent illness. As soon as people are well they will realise they are well and can do what they would have wanted to do anyway. If they are not well there is no reason to do more. The fallacy goes way beyond ME/CFS. Rehab people think people who have had lung disease need to exercise - why? I doubt there is any evidence for that either.
rvallee
Senior Member (Voting Rights)
Going back to this thread in the light of another where comments submitted for the NICE guideline by various medical bodies that rely on active rehabilitation were discussed, it's clear that one problem is that it's assumed that exercise is good for everyone all the time, and that more exercise is always better than less exercise, unless it's excessive even for a healthy very fit person.
I don't think we can change things while this belief holds. Every time something like this gets published, and after every study showing barely significant positive results for a particular subset of people, there's this general smugness about "of course exercise is good for everyone, now brace for the idiots who will claim it's not good for them".
And really they don't mind calling us all idiots, or worse, for it. And of course those same people pay no attention to every study that shows otherwise, and consider even a huge number of reports to be anecdotes, confident that there is no mechanism to account for harm, since PEM is not considered harm, isn't even minimally understood, and has never been documented anywhere.
One comment on the NICE guideline, I think it was the neurologists, was that since exercise is always good, they'd need robust evidence of harm to accept rejecting the assumption that it's good for everyone all the time. And we'll never get that evidence, the goalposts will always move as needed, and there is no way to objectively show it anyway. Even actimetry is useless here since it can always be dismissed as not trying, as not being motivated, and therefore failing at correcting using the treatment, rather than the treatment being ineffective. Same for employment, it's even easier to call us losers trying to get off work.
And that's despite the very best evidence out there being a marginal subjective benefit for 1 in 7 (from PACE). It's still assumed that 14% = 100% quantitatively and qualitatively, that it just treats the fatigue and that's final. They can write all they want about how they don't mean that it treats it, this is what's always understood about it anyway, and it's not up for discussion.
Exercise treats fatigue and anyone who says otherwise is an idiot, is the gist of it. Us saying so only reinforces the general notion that everything we say should be dismissed.
And of course that belief largely comes from the biopsychosocial ideology, where active rehabilitation where patients must engage and participate in their own recovery has replaced the notion of convalescence, especially and even more so when there are no objective markers of illness. Which as it turns out is almost all the time, since biomarkers of disease don't always show the full picture.
There was a recent thread about thyroid problems emphasizing that, how a decades-long insistence that a normal biomarker of thyroid function led to dismissing disabling symptoms as being merely "residual", because for those symptoms there is no biomarker. Or for any symptom, for that matter. Hence the complete separation of illness and disease, subjective and objective.
There is no doubt that a normal level of exercise is good for healthy people, although not nearly as much as is generally claimed. And we are assumed to be healthy, so that's basically end of discussion right here. Especially as the new normal is that you have to be very ill, almost deathly so, in order for an exception to exercise being good for everyone all the time to apply.
We keep seeing studies pop up all the time about various subsets where the benefits are also marginal at best, and the tradeoffs are never considered, because it makes them feel like they're doing something. Oddly enough, it's been pointed out how it justifies their job as clinicians, when for all intents and purposes it actually does the opposite. Anyone who does more harm than good has no justification to continue being employed. But here we are.
So we are stuck in that it's more likely that we find markers of illness than biomarkers of disease for ME/CFS, while biomarkers of disease only tell part of the story and markers of illness don't seem to matter. Only diseases. Which is a problem with medicine at its core, and we seem to be stuck there, there is no way out of this.
It's really all despairing. We are basically stuck with the equivalent of religious fanaticism that will never accept the premise that it could possibly ever be wrong. Religious fanaticism that is fully in control, legally and officially.
I don't think we can change things while this belief holds. Every time something like this gets published, and after every study showing barely significant positive results for a particular subset of people, there's this general smugness about "of course exercise is good for everyone, now brace for the idiots who will claim it's not good for them".
And really they don't mind calling us all idiots, or worse, for it. And of course those same people pay no attention to every study that shows otherwise, and consider even a huge number of reports to be anecdotes, confident that there is no mechanism to account for harm, since PEM is not considered harm, isn't even minimally understood, and has never been documented anywhere.
One comment on the NICE guideline, I think it was the neurologists, was that since exercise is always good, they'd need robust evidence of harm to accept rejecting the assumption that it's good for everyone all the time. And we'll never get that evidence, the goalposts will always move as needed, and there is no way to objectively show it anyway. Even actimetry is useless here since it can always be dismissed as not trying, as not being motivated, and therefore failing at correcting using the treatment, rather than the treatment being ineffective. Same for employment, it's even easier to call us losers trying to get off work.
And that's despite the very best evidence out there being a marginal subjective benefit for 1 in 7 (from PACE). It's still assumed that 14% = 100% quantitatively and qualitatively, that it just treats the fatigue and that's final. They can write all they want about how they don't mean that it treats it, this is what's always understood about it anyway, and it's not up for discussion.
Exercise treats fatigue and anyone who says otherwise is an idiot, is the gist of it. Us saying so only reinforces the general notion that everything we say should be dismissed.
And of course that belief largely comes from the biopsychosocial ideology, where active rehabilitation where patients must engage and participate in their own recovery has replaced the notion of convalescence, especially and even more so when there are no objective markers of illness. Which as it turns out is almost all the time, since biomarkers of disease don't always show the full picture.
There was a recent thread about thyroid problems emphasizing that, how a decades-long insistence that a normal biomarker of thyroid function led to dismissing disabling symptoms as being merely "residual", because for those symptoms there is no biomarker. Or for any symptom, for that matter. Hence the complete separation of illness and disease, subjective and objective.
There is no doubt that a normal level of exercise is good for healthy people, although not nearly as much as is generally claimed. And we are assumed to be healthy, so that's basically end of discussion right here. Especially as the new normal is that you have to be very ill, almost deathly so, in order for an exception to exercise being good for everyone all the time to apply.
We keep seeing studies pop up all the time about various subsets where the benefits are also marginal at best, and the tradeoffs are never considered, because it makes them feel like they're doing something. Oddly enough, it's been pointed out how it justifies their job as clinicians, when for all intents and purposes it actually does the opposite. Anyone who does more harm than good has no justification to continue being employed. But here we are.
So we are stuck in that it's more likely that we find markers of illness than biomarkers of disease for ME/CFS, while biomarkers of disease only tell part of the story and markers of illness don't seem to matter. Only diseases. Which is a problem with medicine at its core, and we seem to be stuck there, there is no way out of this.
It's really all despairing. We are basically stuck with the equivalent of religious fanaticism that will never accept the premise that it could possibly ever be wrong. Religious fanaticism that is fully in control, legally and officially.
If it makes you feel better and sleep better, why not? As for the long-term effects, I'd take the position that it is safe unless there is evidence that it is not. (I'm talking about exercises that is not likely to trigger PEM here). Not doing because there is no evidence that it is safe would be like not eating chocolate till there is evidence that it is safe.
It may be true that no exercise is truly safe. (I've been saying myself that ME/CFS is not safe at any speed). Any exercise could trigger PEM depending on your condition du jour. For me, the benefits of outdoor walking have been something I'm willing to trade for occasional PEM. That's because I've always managed to recover from minor PEMs without long-lasting effect. But that may not be true for others. So, the critical question here is, how detrimental is occasional minor PEM in general? Since there is no statistics on it, each patient will have to decide the trade-off on her own.
It may be true that no exercise is truly safe. (I've been saying myself that ME/CFS is not safe at any speed). Any exercise could trigger PEM depending on your condition du jour. For me, the benefits of outdoor walking have been something I'm willing to trade for occasional PEM. That's because I've always managed to recover from minor PEMs without long-lasting effect. But that may not be true for others. So, the critical question here is, how detrimental is occasional minor PEM in general? Since there is no statistics on it, each patient will have to decide the trade-off on her own.
It's important to note that there are various subsets of PWME. I'm in the subset that haven't suffered lengthy crashes. PEM lasted hours or days. Bad reactions to foods or supplements generally lasted the same time frame. So, for this subset, experimentation is fairly safe, and lets us adjust our lifestyles to minimize symptoms.
There's another subset who do suffer lengthy crashes. Their lives seem more like walking though a minefield, never knowing if the next step will blow a leg off. Experimenting has been valuable for me, but I accept that it isn't the best method for everyone. Pretty much everything about ME is personal judgement about the trade-offs. We can't even trust "experts", since there are no experts.
We don’t know how fixed being in a particular subset is given there are people who start off relatively mild who become severe or very severe.
Ugh.
These people recommending exercise seem to think that activity doesn't count. I mean, if your capacity for activity is suddenly cut in half, you have to prioritise what you do. If you are a mother without much support, you are going to prioritise work and feeding your children, if you can, over your weekly netball game.
If playing football is central to someone's identity, that person might be able to prioritise that in a restricted sort of way, but they will need a huge amount of support so that they aren't needing their capacity for activity for other things. One year, my son did exactly that - he went to his football team training and did what he could and he played a quarter of a game each weekend. He didn't go to school, he did a bit of school work from his bed. His school had stairs and it was noisy and he just couldn't manage it, even part time. He went to a youth group once a week too. That approach kept him in contact with his friends; it kept up his morale and got him through the year. But, he could do that because pretty much everything else was done for him and so he could rest a lot.
This preoccupation with walking to the letter box and then each week walking five metres more or whatever, it's so weird when there so often seems to be zero interest in whether the person is walking to the bathroom or is preparing their own meals or doing the vacuuming. There's virtually never talk of measuring how much activity someone is doing before slapping an exercise programme on them. Adding an exercise programme without considering what the existing activity level is makes as much sense as prescribing a drug without first considering the dosage that the person is already taking.
I've had a frustrating conversation with a cardiologist who wanted to put my son and I on a programme of graded exercise. He could not seem to get his head around the idea that housework counted as activity, and that, given I was struggling to get through the housework, I had no spare capacity for doing more activity. (It wasn't as if I hadn't tried - I had tried a programme of pilates and just got worse.)
The thing I want to shout from the rooftops is that people with ME/CFS generally are not opposed to activity - in fact, being able to be active without having to consider whether we will end up in bed in pain is exactly what we want. It's just that exercise, or even just more activity, doesn't fix us.
These people recommending exercise seem to think that activity doesn't count. I mean, if your capacity for activity is suddenly cut in half, you have to prioritise what you do. If you are a mother without much support, you are going to prioritise work and feeding your children, if you can, over your weekly netball game.
If playing football is central to someone's identity, that person might be able to prioritise that in a restricted sort of way, but they will need a huge amount of support so that they aren't needing their capacity for activity for other things. One year, my son did exactly that - he went to his football team training and did what he could and he played a quarter of a game each weekend. He didn't go to school, he did a bit of school work from his bed. His school had stairs and it was noisy and he just couldn't manage it, even part time. He went to a youth group once a week too. That approach kept him in contact with his friends; it kept up his morale and got him through the year. But, he could do that because pretty much everything else was done for him and so he could rest a lot.
This preoccupation with walking to the letter box and then each week walking five metres more or whatever, it's so weird when there so often seems to be zero interest in whether the person is walking to the bathroom or is preparing their own meals or doing the vacuuming. There's virtually never talk of measuring how much activity someone is doing before slapping an exercise programme on them. Adding an exercise programme without considering what the existing activity level is makes as much sense as prescribing a drug without first considering the dosage that the person is already taking.
I've had a frustrating conversation with a cardiologist who wanted to put my son and I on a programme of graded exercise. He could not seem to get his head around the idea that housework counted as activity, and that, given I was struggling to get through the housework, I had no spare capacity for doing more activity. (It wasn't as if I hadn't tried - I had tried a programme of pilates and just got worse.)
The thing I want to shout from the rooftops is that people with ME/CFS generally are not opposed to activity - in fact, being able to be active without having to consider whether we will end up in bed in pain is exactly what we want. It's just that exercise, or even just more activity, doesn't fix us.
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Yes, I thought of that last night. Not having crashed doesn't guarantee that I won't crash in the future. Likewise, someone who did crash from testing LDN isn't guaranteed to crash from any other treatment or activity. It's all a matter of personal judgement of risks, and those risk probabilities change over time. That's another difference between ME and many other diseases: ME is far less predictable.