Wired Magazine: The Painful Truth About Long Covid

[Learningandlistening]

I would be shocked if any but a small minority never try expanding their energy envelope while suffering from LC or ME/CFS. What else is there to do with one's time?

But that's just a different way of saying people are "trying exercise"! So then, instead of people doing it on their own, why not study those efforts under controlled conditions, aka, "run studies of exercise with ppl who have PEM"?

 

[JellyBabyKid]

try to stay under it.

swapping one activity in their life for this other activity that takes up the same amount of energy.

lots of people are using their energy in *some* ways that are probably replaceable with this kind of exercise, I think it's probably a good swap.

This was the exact point that I was making, is that people regularly overshoot their energy envelope because it is impossible to stay within such a minuscule amount of available energy, and based on my own experience, we are all regularly trying to increase our capacity to do more.

This seems to be up fundamental misunderstanding of how pacing works; we don't set some arbitrary limit and try and stay within it we try and figure out how much we can manage and juggle our lives to aim for that limit and regularly miss, because there are things that you have to do that will take you over the limit, just by existing. For some people with severeME, that might be rolling over in bed or eating

When I saw the ME clinic, I was encouraged to include a two minute walk in my day I was literally stopping doing an activity of daily living such as showering or cooking to be able to do this walk.

I still didn't improve, I was just making my life harder by using my available energy to walk instead of on my activities of daily living.

ME does not respond like you would expect that you can habituate to an activity and gradually increase it every time you try and increase it PEM slams you back HARD.

 

[Concentric_Spiral]

This was the exact point that I was making, is that people regularly overshoot their energy envelope because it is impossible to stay within such a minuscule amount of available energy, and based on my own experience, we are all regularly trying to increase our capacity to do more.

This seems to be up fundamental misunderstanding of how pacing works; we don't set some arbitrary limit and try and stay within it we try and figure out how much we can manage and juggle our lives to aim for that limit and regularly miss, because there are things that you have to do that will take you over the limit, just by existing. For some people with severeME, that might be rolling over in bed or eating

When I saw the ME clinic, I was encouraged to include a two minute walk in my day I was literally stopping doing an activity of daily living such as showering or cooking to be able to do this walk.

I still didn't improve, I was just making my life harder by using my available energy to walk instead of on my activities of daily living.

ME does not respond like you would expect that you can habituate to an activity and gradually increase it every time you try and increase it PEM slams you back HARD.

Exactly. There's nothing arbitrary about the limits imposed by PEM.

 

[forestglip]

Otherwise, what will happen is people who are trying to avoid overshooting are statistically likely to end up *undershooting* the envelope. Understandably, but that is a recipe for maintaining a status quo physically and mentally, at best, or very slowly deconditioning, at worst.

I think this is based on a misconception that it is easy for people with ME/CFS to not do anything. It is very difficult to stay under the envelope. I guess I shouldn't speak for every single person, but I think at least for a good portion.

At least in my case, it's not a binary of a specific limit where I get PEM if I go just over it. It's a fuzzy limit, and I'm constantly going over and under it because it is very hard to bear not doing all the things I want to do. And I constantly have to pay the price or reluctantly recalibrate. So I don't think there's much risk of inadvertently undershooting any limit. I will know the exact day I don't have PEM anymore because I am constantly feeling it, to varying degrees.

For those who don't experience PEM, I think it may be very difficult to understand that people with ME/CFS are not living in a comfy world of undershooting their limit out of an irrational fear of the consequences. We're intimately familar with where the limit is and what the actual consequences are.

This is further compounded by the fact that the external world only sees a biased view of our experience - people with ME/CFS are only seen when they are at their best, and not when they are in the crash, in their dark bedroom.

I think these may be some of the biggest factors slowing down meaningful research into ME/CFS: That it does not look nearly as bad as it is, and that it can seem like people with ME/CFS may be playing it overly safe and need to just try testing their limits.

 

[Utsikt]

In my opinion, the diagnostic category of LC is somewhat like gluten sensitivity as a diagnostic category. A minority have something like celiac disease, the symptoms of which have a specific biological etiology. Another minority may have something else that's like celiac disease, but not quite the same thing. And then, because the diagnostic categories are capacious, there's a bunch of other people who have "gluten sensitivity" but in fact their symptoms are due to any number of other factors. Not only that, but some of those people respond well to BPS interventions because the etiology of their condition can be treated with BPS interventions.

It seems like you have a lot of faith in BPS treatments. Can you name a single condition where we have robust evidence that BPS produces meaningful benefit?

Those people — in the case of LC dxs, let's say 30-40%? who knows — should in fact be approached with something like exposure therapy and responsible gradual exercise, and "brain retraining" of whatever kind they seem to get benefit from.

Is there any evidence that demonstrates that these kinds of interventions work? I have never seen it.

Furthermore, we’ve got recent papers by the BPS folks where they openly discuss that many of their «recovered» patients actually have just reframed their health status despite not being recovered. Recovered means to have accepted your situation. Or not working any more so you have less symptoms. So «seems to benefit» covers a lot of ground here.

Additionally, people will report benefiting from things that clearly don’t work, because that’s what people do. Like acupuncture, chiropractors, detoxing, medallions, etc. so clearly reports of benefit are seriously unreliable and not something that can be used to guide medical treatments.

More importantly: If they are allowed/encouraged to believe that in fact they have what the other folks have (the "celiac" subset), they are likely to get worse, and suffer harm, because they will do things like try a bunch of therapeutics, or avoid physical activity needlessly, or become distressed that they will never recover from a condition they don't actually have.

Well, if you fear your life is over like Garner did while being able to scuba dive, you might benefit from a reality check. I have not seen this be the case for many people in LC circles online. Have you?

Where did you get the 30-40 % above from?

I didn't dismiss the reality of PEM. I said that self-report of PEM doesn't line up with what studies seem to find. That's true. I stand by it. Another recent 2 day CPET study showed the same thing. We can move the goalposts on 2 day CPETs as a good way to dx PEM, but I'm very confident that self-report of PEM and actual PEM don't align, just like self-report of neurocognitive issues doesn't always align with actual ones.

Trish has just looked at the evidence you linked for this claims and it’s not good. If you’re prepared to «stand by» that, I would encourage you to reconsider. You can always find someone agreeing with you in a paper, that doesn’t mean their reason for agreeing is valid.

The reverse is also true! Sometimes people think they *don't* have neurocognitive issues when they do (common in dementia). Self-report of lots of things is unreliable. PEM is no different, and the studies I've seen keep verifying that.

Oh, so now self-report is unreliable, but we have to trust self-reported inferences of causality about brain-retraining being effective?

Don’t you see how conflicting your stances are? It’s ironic that you accuse others of being inconsistent at the same time, based on strawman arguments that none of us have made.

I'm not staking out that position. I was replying to Hoopoe, who said this: "Keep in mind that patients have a lot of lived experience with how their illness responds or does not respond to outside events and their own mental state. We observe all these factors every day." I am simply saying that if we are going to take those patients lived experience seriously, and therefore believe them about how their illness does or doesn't respond to outside events and their mental state, then that extends to those patients who feel they experienced relief from mind-body interventions. I'm merely showing how what Hoopoe said would apply to them.

I think you’ve misunderstood what PEM is. You’re not alone in this, and it includes a lot of patients.

PEM is an observation of a pattern of typical ME/CFS symptoms worsening after doing more than you can normally do while experiencing a relative stability in symptoms and functional capacity.

To say you have PEM is not to say that those symptoms are caused by X or Y.

When someone say they deteriorated «from» x or Y, we don’t simply accept that as truth. For all we know they might have deteriorated from natural causes, because ME/CFS is a fluctuating disease.

However, studies like MAGENTA and FITNET-NHS documented deterioration in ~20-25 % of the participants. So we know that trying to do more than you normally do can be harmful.

CARE_CFS documented a worsened bell score in 44 % of their participants, yet the participants said they were happy with the programme.

And studies like those of Kielland show that for those that have already lost their income, returning to a functional level where you can earn an income is exceedingly rare in the population that has received a G93.3 diagnosis. So long term loss of function is the norm.

 

[Concentric_Spiral]

I think this is based on a misconception that it is easy for people with ME/CFS to not do anything. It is very difficult to stay under the envelope. I guess I shouldn't speak for every single person, but I think at least for a good portion.

At least in my case, it's not a binary of a specific limit where I get PEM if I go just over it. It's a fuzzy limit, and I'm constantly going over and under it because it is very hard to bear not doing all the things I want to do. And I constantly have to pay the price or reluctantly recalibrate. So I don't think there's much risk of inadvertently undershooting any limit. I will know the exact day I don't have PEM anymore because I am constantly feeling it, to varying degrees.

For those who don't experience PEM, I think it may be very difficult to understand that people with ME/CFS are not living in a comfy world of undershooting their limit out of an irrational fear of the consequences. We're intimately familar with where the limit is and what the actual consequences are.

This is further compounded by the fact that the external world only sees a biased view of our experience - people with ME/CFS are only seen when they are at their best, and not when they are in the crash, in their dark bedroom.

I think these may be some of the biggest factors slowing down meaningful research into ME/CFS: That it does not look nearly as bad as it is, and that it can seem like people with ME/CFS may be playing it overly safe and need to just try testing their limits.

Exactly! It's amazing that someone can spend a year researching a topic and still fail to grasp the basics of what it's like to live with ME/CFS. It must be very hard or unpleasant to imagine? But I still find it somewhat incredible. Who would accept this life capriciously and without testing its limits?!?

 

[JellyBabyKid]

I think this is based on a misconception that it is easy for people with ME/CFS to not do anything. It is very difficult to stay under the envelope. I guess I shouldn't speak for every single person, but I think at least for a good portion.

At least in my case, it's not a binary of a specific limit where I get PEM if I go just over it. It's a fuzzy limit, and I'm constantly going over and under it because it is very hard to bear not doing all the things I want to do. And I constantly have to pay the price or reluctantly recalibrate. So I don't think there's much risk of inadvertently undershooting any limit. I will know the exact day I don't have PEM anymore because I am constantly feeling it, to varying degrees.

For those who don't experience PEM, I think it may be very difficult to understand that people with ME/CFS are not living in a comfy world of undershooting their limit out of an irrational fear of the consequences. We're intimately familar with where the limit is and what the actual consequences are.

This is further compounded by the fact that the external world only sees a biased view of our experience - people with ME/CFS are only seen when they are at their best, and not when they are in the crash, in their dark bedroom.

I think these may be some of the biggest factors slowing down meaningful research into ME/CFS: That it does not look nearly as bad as it is, and that it can seem like people with ME/CFS may be playing it overly safe and need to just try testing their limits.

This is such a good explanation and I agree totally; I can't remember the last time I didn't have some symptoms of PEM, I think it was probably long before long covid added to my ME.

 

[ScoutB]

Now let's understand gradual exercise therapy as "any kind of activity undertaken with the end of increasing the size of that envelope." People could swap some activity in their life for that exercise, and in doing so perhaps slowly increase their envelope. We could study this, and see if it works for some people, and which kind of activities are most effective at doing so. This seems like a very important area of study, and it can only be done by studying "exercise" so defined in people with PEM. It's not clear to me why that would be impossible, since if there's a closed system of energy, it would just mean someone swapping one activity in their life for this other activity that takes up the same amount of energy.

As has been said before on S4ME, the issue is not that this idea is preposterous on its face -- it's that it's maybe the most obvious idea. It's one of the first things the patient thinks of (on an intuitive level if not explicitly, before they even consider themselves sick). They are likely to have friends and family suggest some version of this. It appeals to all of our intuitions about how healing and exercise should work.

I certainly tried about a dozen personally-invented versions of graded exercise the first years I was declining (including getting a walking-speed treadmill and increasing my time spent on it each day while I worked). I tried to return to jogging and soccer over and over, each time convinced my new recovery plan would work.

On the research side, this question has very much already been tested! I'd argue that the past 30 years of ME/CFS research has been dominated by researchers thinking *their* version of graded exercise therapy is going to work, running a small trial with no objective endpoint, and reporting success based on positive responses to surveys taken immediately after the intervention concludes. How many more years should patients wait disabled, with minimal research into any other form of treatment, while researchers convince themselves that they've really exhausted all possible versions of this question?

 

[Rick Sanchez]

Thanks for your reply. I know you all have discussed these issues extensively, so forgive me for rehashing. I don't think "exercise" is a very helpful term. As you point out, (a subset) of people with LC and (by definition) people with ME experience PEM if they overexert themselves. But exertion isn't just "exercise." People often report crashing from excessive cognitive effort (makes sense, the brain is part of metabolism).

With pacing, the assumption is there's some kind of envelope or limit, and if someone goes beyond it they'll crash. People then end up determining that limit — very vague, very hard to figure out, no way to measure — through experience, and try to stay under it.

Now let's understand gradual exercise therapy as "any kind of activity undertaken with the end of increasing the size of that envelope." People could swap some activity in their life for that exercise, and in doing so perhaps slowly increase their envelope. We could study this, and see if it works for some people, and which kind of activities are most effective at doing so. This seems like a very important area of study, and it can only be done by studying "exercise" so defined in people with PEM. It's not clear to me why that would be impossible, since if there's a closed system of energy, it would just mean someone swapping one activity in their life for this other activity that takes up the same amount of energy.

I understand that for people who are already using all their energy for their basic every day activities, that swap isn't insignificant. But given that lots of people are using their energy in *some* ways that are probably replaceable with this kind of exercise, I think it's probably a good swap.

Otherwise, what will happen is people who are trying to avoid overshooting are statistically likely to end up *undershooting* the envelope. Understandably, but that is a recipe for maintaining a status quo physically and mentally, at best, or very slowly deconditioning, at worst.

Well since you appreciate anecdotes. Before I or my parents had ever heard of MECFS we thought of slowly increasing my energy and getting me back to life by hirering an elite personal trainer who I worked with 3-4 times a week.

Didn't work.

There just isn't any way to gradually increase the energy envolope for MECFS patients.

It's also an annoying argument and frankly insulting argument where patients are told. Oh well clearly a) you tried too hard. b) you didn't try hard enough.

The goldilocks CBT and GET. There must exist some perfect amount of both that patients simply haven't tried throughout the last 100 years. It's that or the obvious c) it simply doesnt work.

 

[Concentric_Spiral]

It's hard for me to hear people recommend doing the most obvious thing when I've been unable to work or do much of anything for almost a decade, despite trying everything under the sun. Tell me you think I'm malingering without telling me you think I'm malingering.

 

[JellyBabyKid]

How many more years should patients wait disabled, with minimal research into any other form of treatment, while researchers convince themselves that they've really exhausted all possible versions of this question?

Yes. Exactly. After 30 years+, NICE reviewing the research landscape and declaring it low and very low quality, and s I many patients being left bed bound, or worse, at what point can we admit that this is not working and move on to a different approach and exhaust all biomedical avenues?

 

[Concentric_Spiral]

But that's just a different way of saying people are "trying exercise"! So then, instead of people doing it on their own, why not study those efforts under controlled conditions, aka, "run studies of exercise with ppl who have PEM"?

One could also conclude that it doesn't work...

 

[Utsikt]

Now let's understand gradual exercise therapy as "any kind of activity undertaken with the end of increasing the size of that envelope." People could swap some activity in their life for that exercise, and in doing so perhaps slowly increase their envelope. We could study this, and see if it works for some people, and which kind of activities are most effective at doing so. This seems like a very important area of study, and it can only be done by studying "exercise" so defined in people with PEM. It's not clear to me why that would be impossible, since if there's a closed system of energy, it would just mean someone swapping one activity in their life for this other activity that takes up the same amount of energy.

I’m sorry to be blunt, but this is getting truly ridiculous.

Have you even looked at NICE NG206? There are been hundreds of studies on this on every kind of iteration of «trying to eventually do a bit more in order to cause an improvement». Not a single one has demonstrated that it works by any reasonable standard. It’s the single most trialed intervention for ME/CFS by a wide margin, along with CBT.

For someone that claims they are «extremely familiar» with the science, you seem woefully uninformed about the last three decades of research.

The headline and subtitle are outside my control, which sucks. The article itself does not claim that these therapies are "cutting edge" or "not talked about".

Just that they are being suppressed by the patient communities.

 

[OrganicChilli]

Your comments are quite funny and made me laugh. They really don't read as if you had spent time reading the research - good or bad. I'm not sure if you're talking about the "energy envelope" in earnest as it's just used as a metaphor to explain limitations to others. There is no such thing as a "closed energy system" and you cannot go just above it by swapping doing the laundry for hoovering and thinking next week you'll be able to do both on the same day.

It sounds to me as if you view ME/CFS as some sort of deconditioning despite also admitting deconditioning is a consequence. Deconditioning does not appear overnight and it wouldn't give me chills or a sore throat from watching TV (which, by the way, does not use more energy than reading a book - not like you could measure either).

 

[wallfish]

Hi @Learningandlistening, it's good to see that you're engaging here.

Upthread I said that your piece felt 'almost strategically evil'. I don't get the same impression from what you write here. I do hope the discussion can get you to doubt some of your conclusions. Or, of course, that your arguments stand up to scrutiny, prove us all wrong, and help advance our understanding and treatment of this terrible illness.

I hope you're not discouraged by the pushback, but stay for whichever it turns out to be.

 

[Learningandlistening]

Exactly! It's amazing that someone can spend a year researching a topic and still fail to grasp the basics of what it's like to live with ME/CFS. It must be very hard or unpleasant to imagine? But I still find it somewhat incredible. Who would accept this life capriciously and without testing its limits?!?

I mean...much of the article — and many hours of my interviews — were spent describing exactly this. Bedbound, mute, unable to talk or chew. I spoke with a dozen people who had been in such a state, many for years. They, too, are like you all! They, too, tried everything. They, too, did all the intuitive things you have done. They, like you, are not idiots, and read over the research, and even participated in precisely these kinds of discussions, and attacked people like me as harming patients. And then these people — whose experience of their own severe illness is as deep and intimate as anyone's — found that when they tried one of the interventions that they themselves had maligned in the past, or hadn't worked for them, it helped them recover. Because they've spent years on forums like this, and online, they are intimately familiar with spontaneous remission. And relapses. And the stories of people who thought they'd recovered, only to crash months or years later.

But these people are convinced by their own experience of how the intervention worked that none of these things are true. They are convinced the therapy worked for them. My area of expertise is pseudoscientific medicine. Is this like the people who — in possibly the worst and most popular analogy people like to use — attribute their cancer remission to prayer or the Gerson diet or the Zapper?

No. For many, many reasons. First, one's experience of cancer and cancer symptoms isn't like one's experience of ME/CFS symptoms. Second, the *vast* majority of people who claim they have been "miraculously cured" of cancer by a quack intervention are *also* doing regular proven interventions like chemo and surgery. Somehow people who use the cancer analogy seem unaware of this phenomenon. The error in believing one has been healed of cancer by wheatgrass shots is one of misattribution: it was actually the chemo and surgery. (There's lots of reasons people don't want to credit those interventions, but that's a different story.) Cases of spontaneously remitting cancer — like spontaneously remitting ALS — are vanishingly rare, and these days almost impossible to study because everyone with cancer gets treated. In the cases they don't? They die. There aren't thousands of online testimonials of people that eschewed cancer treatment and miraculously recovered, for the simple reason it doesn't happen. The people that opt for wheatgrass and prayer only? They almost invariably die.

With ME/CFS there is no "chemo" or "surgery," so the *only* misattributions that are possible in the cases I've described are: (a) spontaneous remission, which these people are very, very familiar with, having experienced it themselves, or (b) some other unproven "biomedical" protocol.

I don't know what's going on with them. I never claimed to. Nor do I think that "everyone" or even "most" people with severe ME/CFS would benefit from these interventions. But even if it were...I don't know, 5%? That would stil be extraordinary. It would also be noise in a well-powered study, which, as you all know, is hard to even run with severe ME/CFS.

At any rate: TLDR — I have spent many, many hours talking with people who were severely ill for years. I have talked with people who are STILL severely ill even after having tried everything. I don't know exactly what's going on. But I don't find the "they are just remitting" explanations of the hundreds of testimonials especially compelling, and the fact that the cancer/prayer analogy is used to dismiss tells me there's a deep misunderstanding of the difference between these types of testimonials. (And even IF these are ALL spontaneous remissions, the way in which something remits — was it instant, like the Sarno back pain book cure people? did it take a week? a month? — tells us something about what's possibly causing the symptoms biologically.)

 

[Concentric_Spiral]

I'm going to stop commenting because I think it would be more productive for @Learningandlistening to respond to other people's infinitely better informed and more substantive criticisms.

 

[Learningandlistening]

Hi @Learningandlistening, it's good to see that you're engaging here.

Upthread I said that your piece felt 'almost strategically evil'. I don't get the same impression from what you write here. I do hope the discussion can get you to doubt some of your conclusions. Or, of course, that your arguments stand up to scrutiny, prove us all wrong, and help advance our understanding and treatment of this terrible illness.

I hope you're not discouraged by the pushback, but stay for whichever it turns out to be.

This means a huge amount to me. Really, I'm very grateful to you. The reason I've been engaging with people — almost non-stop — for the last three days, on here and on social media, is because I care. And because I owe it to the community that's suffering, and feels I have done them tremendous harm through my work. I'll continue to engage here as much as I can find time for.

 

[Trish]

First, I think studies of BPS interventions are simply very difficult to do, for the same reason that studies of any intervention that might depend on therapeutic alliance are very difficult to do.

They are not difficult to do. PACE would have been a decent study if the researchers had reported the results honestly. It showed no long term benefit, but the researchers chose to pretend it did by highlighting within group comparisons rather than between groups which showed no difference from controls. They switched the outcome measures so they could claim efficacy at 12 months when their original protocol showed no significant benefit, and they hid most of the objective outcomes that inconveniently for them showed no benefit.
It is easy to do it honesty. As shown in the MAGENTA and FITNET trials on children where no benefit was found.

With regards to LDN (or metformin, or craniocervical surgery, or whatever), I'd make two points: The first is that these kinds of interventions are more amenable to study than the BPS interventions. The second is that *generally* they are treated as having more promise, by the broader communities, because they are seen to validate a purely organic (I hate these terms, but fine) symptom etiology. Recovery stories are also treated more gently by the broader community.

No drugs and surgery are not more amenable to study. That is simply wrong. No they are not more promising until a trial has shown them to be. LDN is not looking at all promising from early reports of one study, and surgery I hope will never be trialled as there's no evidence it's a good idea and it's major and potentially harmful surgery.

If we're going to give credence to patients' lived experience of how their illness responds or doesn't respond, then shouldn't we give credence to the lived experiences of patients — like Larson and Lupi in my piece, and thousands of others — who tried tons of things, are very familiar with how their illness responds or does not, and then finally find relief through some BPS intervention? And they're sure it's right because they can feel it? Or do we reserve disdain, skepticism, and disbelief for them, but keep a more open mind to the ones who claim it was LDN, or metformin, or their second craniocervical surgery that led to their recovery?

I've never seen a recovery story for LDN, only a few with mild improvement, and very few for surgery. I treat them the same as any other recovery story, Pleased for the individual that they have recovered. But not seeing them as evidence of anything but good fortune.

I didn't dismiss the reality of PEM. I said that self-report of PEM doesn't line up with what studies seem to find. That's true. I stand by it. Another recent 2 day CPET study showed the same thing. We can move the goalposts on 2 day CPETs as a good way to dx PEM, but I'm very confident that self-report of PEM and actual PEM don't align, just like self-report of neurocognitive issues doesn't always align with actual ones. The reverse is also true! Sometimes people think they *don't* have neurocognitive issues when they do (common in dementia). Self-report of lots of things is unreliable. PEM is no different, and the studies I've seen keep verifying that.

You really don't get PEM. It's defined by a pattern of worsening symptoms and function, not by biology, nor by CPET.

Thanks for your reply. I know you all have discussed these issues extensively, so forgive me for rehashing. I don't think "exercise" is a very helpful term. As you point out, (a subset) of people with LC and (by definition) people with ME experience PEM if they overexert themselves. But exertion isn't just "exercise." People often report crashing from excessive cognitive effort (makes sense, the brain is part of metabolism).

With pacing, the assumption is there's some kind of envelope or limit, and if someone goes beyond it they'll crash. People then end up determining that limit — very vague, very hard to figure out, no way to measure — through experience, and try to stay under it.

Now let's understand gradual exercise therapy as "any kind of activity undertaken with the end of increasing the size of that envelope." People could swap some activity in their life for that exercise, and in doing so perhaps slowly increase their envelope. We could study this, and see if it works for some people, and which kind of activities are most effective at doing so. This seems like a very important area of study, and it can only be done by studying "exercise" so defined in people with PEM. It's not clear to me why that would be impossible, since if there's a closed system of energy, it would just mean someone swapping one activity in their life for this other activity that takes up the same amount of energy.

I understand that for people who are already using all their energy for their basic every day activities, that swap isn't insignificant. But given that lots of people are using their energy in *some* ways that are probably replaceable with this kind of exercise, I think it's probably a good swap.

Otherwise, what will happen is people who are trying to avoid overshooting are statistically likely to end up *undershooting* the envelope. Understandably, but that is a recipe for maintaining a status quo physically and mentally, at best, or very slowly deconditioning, at worst.

No you really don't seem to get it. I do understand that can be difficult for someone who doesn't experience the reality of living with PEM and the difficulty of pacing and the constant urge or need to do just a bit more that we have to try to restrain. Most of us don't have the luxury of living within a self defined envelope. We muddle along as best we can, with life's demands forcing us over our limits repeatedly. We don't need therapists to guide us to add exercises to our already complicated lives that are likely to just add to the frequency of crashing.

The headline and subtitle are outside my control, which sucks. The article itself does not claim that these therapies are "cutting edge" or "not talked about".

So do something about it. It's your responsiblity as author of the article to get it changed and if they refuse, to retract the article. It really is that serious. In fact I think you should retract the article anyway or insist on giving someone else a right of reply to put right the harm you have done.

But that's just a different way of saying people are "trying exercise"! So then, instead of people doing it on their own, why not study those efforts under controlled conditions, aka, "run studies of exercise with ppl who have PEM"?

They have done. Ad nauseam. You aren't listening.
Read the Magenta trial, as just one example where significant numbers of children got sicker and one was suicidal as a result of flexible GET.

 

[Utsikt]

And then these people — whose experience of their own severe illness is as deep and intimate as anyone's — found that when they tried one of the interventions that they themselves had maligned in the past, or hadn't worked for them, it helped them recover.

I know you know better than this, but accuracy is key here.

They did not «find that it helped them recover». That is their belief, their interpretation of a causal relationship based on observations that are not suitable to determine causal relationships.

But these people are convinced by their own experience of how the intervention worked that none of these things are true. They are convinced the therapy worked for them.

Yes, it’s a conviction, not a proven causal relationship.

My area of expertise is pseudoscientific medicine. Is this like the people who — in possibly the worst and most popular analogy people like to use — attribute their cancer remission to prayer or the Gerson diet or the Zapper?

Yet you seem to be unaware of all of the common mistakes that are also very present in BPS studies.

I don't know what's going on with them. I never claimed to. Nor do I think that "everyone" or even "most" people with severe ME/CFS would benefit from these interventions. But even if it were...I don't know, 5%? That would stil be extraordinary. It would also be noise in a well-powered study, which, as you all know, is hard to even run with severe ME/CFS.

No, it would not be just noise, it would be glaringly obvious if 5 % extra fully or mostly recovered in the intervention group compared to the control group. We’ve had studies with hundreds of patients that don’t show anything like that. Just by pure chance, wouldn’t you end up with a least one study where you had 10 % or 15 % of those in the intervention group if you do hundreds of studies? Surely that would have showed up by now.

At some point you have to ask yourself how much contra-evidence is enough to be reasonably certain that a hypothesis is wrong. You seemingly keep holding out for that «what if», just like the pseudoscience people do, instead of following the evidence.