Is there any evidence that deconditioning alone causes pain and fatigue?

[oceanblue]

No deconditioning or abnormal muscle function - but more effort needed and post-exertional fatigue in CFS

Exercise performance and fatiguability in patients with chronic fatigue syndrome (Gibson 1993)

Another maximal exertion study (n=12): this one didn't use VO2max, unfortunately, but instead measured peak work rate and found no significant difference between Oxford-criteria CFS patients and 'sedentary' controls, concluding

Patient symptoms in our study cannot be explained by deconditioning though it may contribute to exercise limitation in some CFS patients

They also separately measured function of the thigh muscle and found normal function (same as controls) pre-exercise, but also post exercise inc at 24 and 48 hours. However, unlike controls, the CFS patients did complain of fatigue when rested at 24 and 48 hours.

All 12 CFS subjects complained of the symptom of fatigue when retested at 24 and 48 hours. No control subject complained of fatigue. Eight CFS subjects complained of myalgia at retesting at 24 and 48 hours compared with three subjects in the control group.

CFS patients have higher levels of perceived exertion
Although I'm highlighting it in this study, it's a consistent (though not universal) finding that CFS patients report higher exertion levels at a given heart rate/work load than healthy controls. Handily, exertion has a standard measure: the Borg Rating of Perceived Exertion scale, RPE. There are different way of scoring the scale but this study used 6 (no exertion perceived) to 20 (maximum exertion). While both patients and controls scored 6 at rest, once exercising CFS patients consistently rated their exertion an average of 3.2 points higher than controls.

Hardly surprising, and this might be saying something important about the illness. The authors instead stalk of the need to test the ability of exercise to 'reset the effort perception thershold' in CFS.

 

[oceanblue]

CFS patients have higher levels of perceived exertion (this paper and above post)
Although I'm highlighting it in this study, it's a consistent (though not universal) finding that CFS patients report higher exertion levels at a given heart rate/work load than healthy controls. Handily, exertion has a standard measure: the Borg Rating of Perceived Exertion scale, RPE. There are different way of scoring the scale but this study used 6 (no exertion perceived) to 20 (maximum exertion). While both patients and controls scored 6 at rest, once exercising CFS patients consistently rated their exertion an average of 3.2 points higher than controls.

Just worth pointing out that the Wallman submaximal paper mentioned earlier in this thread also found RPE consistently higher in CFS patients than matched controls, this time 2-2.5 RPE (Perceived Exertion) points higher. It's higher in pretty well every study I've seen but these two studies happen to have conveniently accessible data.

 

[oceanblue]

Another Peter White study showing CFS patients are not deconditioned, this one from 2005:
Is the chronic fatigue syndrome an exercise phobia? A case control study

They measured both fitness with VO2max, and activity using actometers as an objective measure, concluding

As both groups were equally sedentary and inactive, this suggests that fatigue was not caused by current levels of inactivity

VO2max (ml O2/min/kg)
CFS: 27.8
Controls: 31.3

Although the difference was statistically significant, the CFS score is well within normal ranges.

They used a reasonable definition of sedentary

The criteria for sedentary controls were that they thought
they ought to take more exercise, they performed moderate
exercise of 20 min less often than once per week, and they
never/rarely engaged in exercise long enough to work up a
sweat, get the heart pumping or get out of breath

However, they were all hospital staff and may have walked regularly eg as part of a daily commute or to get around the very large hospital they all worked in. So they may not be quite ideal as sedentary controls, cf the Wallman study mentioned earlier that carefully probed all activity undertaken to match controls to patients.

 

[oceanblue]

CFS patients in Graded Exercise trials not deconditioned

Graded exercise is based on the premise that CFS is perpetuated by inactivity and deconditioning, and that graded exercise will reverse this process leading to recovery/improvement. But is this premise true?

Two studies of Graded Exercise Therapy (GET) went to the trouble of measuring the fitness of the CFS patients at baseline and the resulting data showed that the CFS patients were not deconditioned. Yet co-authors of these two studies became the Principal Investigators of the two largest trials ever conducted, both of which in part relied on the premise of deconditioning. PACE (Principal investigator Peter White) relied on it for the GET arm of the trial while FINE (PI Alison Weardon) assumed deconditioning as part of pragmatic rehabilitation - and even used deconditioning as part of the rationale given to paitents for their treatment. Which I find rather strange.

Peter White was co-author of the paper with Fulcher showing that CFS patients in a GET trial (n=66) had a VO2max of 30.6 ml O2/ml/kg, not statistically different from sedentary controls and only a bit below average when compared with population norms. He was also a co-author of the 2005 paper mentioned above (n=41, consecutive patients but not a GET trial) that found a VO2max of 27.8, still within the low normal range. Alison Weardon was a co-author of this 1999 study that found a VO2peak (ie submaximal) of 23.2, which is very impressive given it was achieved at a heart rate of only 140bpm, just 75% of age-predicted maximal Heart Rate. This is not consistent with deconditioning.

I find it hard to understand how White & Weardon were able to design trials based on the premise of deconditioning when they had already conducted studies indicating this was not the case.

No doubt some CFS patients are deconditioned - it's an inevitable consequence of being bedbound, for instance - but the kind of patients that make it to outpatient clinics and GET trials, the very patients the deconditioning premise is applied to - are not deconditioned. Not according to studies carried out by deconditioning proponents.

 

[Sean]

I find it hard to understand how White & Weardon were able to design trials based on the premise of deconditioning when they had already conducted studies indicating this was not the case.

I have long said that peer review in this area of medicine is seriously compromised.

White and Weardon, et al, get away with it because their colleagues (and the general community) let them.

 

[Fred1234567]

We seem to have slipped away from the main point of this thread which is -- Is there published scientific evidence that deconditioning alone causes pain and fatigue. I'm interested in this question, too. There's all the "everybody knows" talk, but is it scientifically supported?

That said, I'm going slightly off-topic, too. My exercise testing early in the illness showed that I had definite abnormalities not attributable to deconditioning. Many of us were unquestionably not deconditioned when the pain and fatigue first hit, so the idea that deconditioning causes our pain and fatigue is utter nonsense IMO.

Y

 

[Fred1234567]

So far no-one has found any published papers on how de-conditioning causes ME!!!
Weird since the "knowledgeable specialists" are so certain that de-conditoning is the root cause of severe ME.

 

[Firestormm]

This thread and the 'evidence' being amassed for deconditioning reminds me of an episode I watched of Panorama the other week on the claims made behind so-called 'performance-enhancing' and 'health-enhancing' sports-products.

When they tried to find the research behind the claims it either was non-existent or was irrelevant or very old or didn't relate to the claims being made: The truth about sports products: http://www.bbc.co.uk/programmes/b01l1yxk

Methinks Ocean should apply to Panorama for a job. It would be a brilliant episode

'Exercise' seems to me to be one of those things that has ever been assumed is vitally important, and therefore the absence of an ability to exercise is deemed a negative. So all efforts are made to 'encourage' a patient to endure 'exercise' whether or not they are physical able to sustain it. It's an assumption. An ideal.

Anyway, what bugs me about the thinking behind 'deconditioning' is the false assumption that we are not 'exercising' as much as we can when we can. Because I don't think we avoid exercise out of fear and I don't think that belief has ever been proved either.

The NICE Guidelines do not (never have) recommended GET for severe patients - I'm not sure if that was why this category of patient were not looked at in PACE - and what is suggested - which isn't very much - is relative to one's ability. I believe that brushing one's hair is mentioned as an exertion that might be worked on in order to build a routine.

For me I do remember focusing my efforts on trying to brush my teeth and building that into a sustainable routine. However, this 'exertion' which might be viewed positively and relative to my ability at the time appears to have gotten lost inside the whole 'exercise/deconditioning' meme that forms so much a part in the papers being discussed.

Back to the thread:

Ocean have you considered looking at the alleged results of deconditioning e.g. accumulation of weight - and how that might have been proved to lead to 'pain' and 'fatigue'? I mean take your search in a slightly different direction. Plenty of studies I would think that look at accumulation of excess weight and 'sedentary' lifestyles and their impact on health - though whether or not they can be applied totally to our situation I do not know.

 

[oceanblue]

I have long said that peer review in this area of medicine is seriously compromised.

White and Weardon, et al, get away with it because their colleagues (and the general community) let them.

I guess that's what we are here for.

 

[oceanblue]

This thread and the 'evidence' being amassed for deconditioning reminds me of an episode I watched of Panorama the other week on the claims made behind so-called 'performance-enhancing' and 'health-enhancing' sports-products.

When they tried to find the research behind the claims it either was non-existent or was irrelevant or very old or didn't relate to the claims being made: The truth about sports products: http://www.bbc.co.uk/programmes/b01l1yxk

Methinks Ocean should apply to Panorama for a job. It would be a brilliant episode

thanks!

'Exercise' seems to me to be one of those things that has ever been assumed is vitally important, and therefore the absence of an ability to exercise is deemed a negative. So all efforts are made to 'encourage' a patient to endure 'exercise' whether or not they are physical able to sustain it. It's an assumption. An ideal.

Anyway, what bugs me about the thinking behind 'deconditioning' is the false assumption that we are not 'exercising' as much as we can when we can. Because I don't think we avoid exercise out of fear and I don't think that belief has ever been proved either.

The NICE Guidelines do not (never have) recommended GET for severe patients - I'm not sure if that was why this category of patient were not looked at in PACE - and what is suggested - which isn't very much - is relative to one's ability. I believe that brushing one's hair is mentioned as an exertion that might be worked on in order to build a routine.

For me I do remember focusing my efforts on trying to brush my teeth and building that into a sustainable routine. However, this 'exertion' which might be viewed positively and relative to my ability at the time appears to have gotten lost inside the whole 'exercise/deconditioning' meme that forms so much a part in the papers being discussed.

Certainly I have more time for the concept of Graded Activity, which would include mental exertion too, is relative to current capablility and isn't directly linked to fitness or tackling deconditioning.

Ocean have you considered looking at the alleged results of deconditioning e.g. accumulation of weight - and how that might have been proved to lead to 'pain' and 'fatigue'? I mean take your search in a slightly different direction. Plenty of studies I would think that look at accumulation of excess weight and 'sedentary' lifestyles and their impact on health - though whether or not they can be applied totally to our situation I do not know.

Not come across anything like that, but please be my guest...

 

[Firestormm]

Yes indeed. Graded Exertion is probably what we all practice I would imagine. Whilst studies have to some extent be contained within a clinical setting to ensure - among other things - consistency of 'treatment' what the trials into GET and ME have failed to take into account (among other things) are the likely differences that each patient experiences in 'exertion' (physical/mental) prior to and post each of these sessions. If that makes sense?

If I were to wear an actometer I would not be surprised to find that whilst largely housebound now and spending a great deal of time in bed, I clock up a far distance simply 'wandering' around the house and even garden and a far amount of mental exertion to boot.

'Deconditioning' is a generalised assumption. It is not relative. I have to walk and hold onto things to get to places even in my home. Might take me longer, but I am rarely (unless asleep) 'inactive' for longer than an hour physically, or 5-10 minutes mentally. And yet relative to working full time for example or to someone 'healthy' of my own age I am certainly 'deconditioned'

 

[Fred1234567]

Amazing really isn't it we are all told that de-condtiiotng is causing the severe ME but no "evidence based medicine" or studies to demonstrate that patients with ME are actually deconditioned. We don't fear exercise....we know that exertion beyond our limits makes us worse and so we try to stay within our limits. Try as we try we still manage to trigger relapses.

 

[Firestormm]

Yep. And I for one would be very interested to know how similar all this thinking is to other conditions.

 

[oceanblue]

Yes indeed. Graded Exertion is probably what we all practice I would imagine. Whilst studies have to some extent be contained within a clinical setting to ensure - among other things - consistency of 'treatment' what the trials into GET and ME have failed to take into account (among other things) are the likely differences that each patient experiences in 'exertion' (physical/mental) prior to and post each of these sessions. If that makes sense?

Think it makes sense: you mean that what is readily measurable for trials is not necessarily a very accurate reflection of the real world exertion of patients in the trial?

...'Deconditioning' is a generalised assumption. It is not relative... And yet relative to working full time for example or to someone 'healthy' of my own age I am certainly 'deconditioned'

Good point. And a key question is are you deconditioned relative to very sedentary but healthy people in the population?

Yep. And I for one would be very interested to know how similar all this thinking is to other conditions.

Very similar! At least when it comes to deconditioning and fatigue. I've posted on this earlier in the thread. Actually,there's a
2012 paper by James Rimmer (thread) that looks at deconditioning 'syndrome', though this paper does include many caveats and qualification, and also includes a graph of unpublished data showing VO2 max of around 15 ml O2/ml/kg for physically disabled patients - which very definitely is a deconditioned level of fitness.

...We don't fear exercise....we know that exertion beyond our limits makes us worse and so we try to stay within our limits. Try as we try we still manage to trigger relapses.

If only that wasn't the case. Graded Exercise then might work.

 

[Firestormm]

'Deconditioning: Loss of physical fitness as the general physiological response to, for example, a prolonged period of inactivity.'

Exercise: Any form of physical activity that uses the major muscle groups of the body. Activities of daily living (for example, brushing hair or getting dressed), sitting up in bed and walking about are all exercise in the context of this guideline.'

'Graded Activity: Activities that have been selected, adapted and graded for therapeutic purposes to promote health and well-being.'

Now ain't that interesting.

Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management of chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) in adults and children: Turnbull N, Shaw EJ, Baker R, Dunsdon S, Costin N, Britton G, Kuntze S and Norman R (2007). Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management of chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) in adults and children. London: Royal College of General Practitioners: 2007

This is the report that influenced quite heavily the NICE Guidelines I believe. Am doing some work that includes this and thought the above might be relevant to this thread.

In reply to your questions Ocean:

1. Yes. There is also this from the same document:

'Graded Exercise Therapy: An evidence-based approach to CFS/ME that involves physical assessment, mutually negotiated goal-setting and education. The first step is to set a sustainable baseline of physical activity, then the
duration of the activity is gradually increased in a planned way that is tailored to the person. This is followed by an increase in intensity, when the person is able, taking into account their preferences and objectives, current activity and sleep patterns, setbacks/relapses and emotional factors. The objective is to improve the person’s CFS/ME symptoms and functioning, aiming towards recovery.'

Now in the trials that relate to GET (which aims to address physical deconditioning of course) there does seem to be something of a dichotomy - we seem to move from 'any form of daily activity' (something that I think is relative to the state of our condition at any particular time and sounds more sensible/realistic) to specific 'physical exercise' as used in these research papers e.g. the six minute walking test. I don't know. I just would like to see something more realistic studied, you know? A more real-life situation.

And it occurs to me, now, that they might have greater success if they looked at Graded Activity than Graded Exercise - if the former also included mental activities pertaining to cognitive function.

2 & 3. Indeed. I mean you should have a baseline for comparison and a sedentary - but healthy person - would do. Although I guess you could compare to someone who is entirely dependent upon others for all forms of physical function and who is unable to function mentally. Whether or not this is realistic I don't know. Again, just thinking here, but I do wonder if all this 'deconditioning' doesn't originate in the sports arena or even in the military. You know following physical injury? Then again I suppose it is just as likely to have originated in the medical rehabilitation field, it's what physiotherapists try to achieve after-all isn't it? But applying a physical injury model to ME is not necessarily the most appropriate. However, it is applied to just about all forms of neurological care, you name the condition and physio's or Occupational Health will be involved - and not always detrimentally either. It's the model they've always known isn't it? Probably all stems from the Greeks! Ha! I think what they found in e.g. PACE Trial was that when you seek to 'prove' such a therapy works for everyone with the same condition, you realise just how little it does in relative terms.

I was re-reading Tom's response to Van Der Mer and co. on that Plos One Rituximab thing, yesterday, and if I get this right - then we should also consider the means by which measuring responses are used. There is a reason why such things as the Chalder Fatigue Scale are not improved or even reviewed - tradition. Plus I suppose if you were to seek an improvement you would have difficulty comparing to past studies. So (before I lose the plot completely) we should consider how one measures 'deconditioned' patients. And you know what? I think that - whether they acknowledge it or not - but they compare us to what we used to do! Despite telling us that we should not expect to return to who we once were, they have to have a baseline too and it's that baseline that is unrealistic perhaps.

So, whilst as patients we might (rightly) consider the use of e.g. questionnaires to be pathetic - sorry - subjective especially in 'modern medicine' - there has to be an alternative or an improvement that establishes this baseline across a group of 'deconditioned' folk - and then you might be better able to judge how individuals/groups of folk with ME (or any other neurological condition) are in relation. Also it would (speaking totally hypothetically here) allow a better measure of any sustained improvement from 'therapy'.

I don't think anyone has done more than try to categorise the severities of ME. I don't think they have looked into and quantified what constitutes a 'severe' patient - what they can and can't do as a group - their functioning capacity (and we are all different of course!). Likewise if you can't/haven't been able to quantify a baseline 'deconditioned' patient with an objective measure or measures - how can you measure improvement or hope to validate a particular 'treatment' protocol?

In the Guidelines you revert to 'personal objectives' and realistic 'goal-setting'. And that's how a practitioner ought to work with a patient - one-to-one. That's your judgement as to whether any intervention is working. But it can't work like that in a clinical trial when the therapy employed isn't personal.

And afore I leave it for the day - when talking of interventions - there should be some consideration afforded to the effect of simply having someone take a professional interest in you. Being able to talk and share and at least 'feel' like something is being done to help. 'Help' is an interesting word too. How many patients receiving any therapeutic intervention might say when completing a questionnaire that 'It helped'? Such a comment - or such a related score on a sheet - could totally misrepresent whether or not the therapy actually resulted in a physical or mental improvement in the actual condition itself.

Sorry. I've really taken your thread off on an albeit related tangent here my friend

Just to add to Fred's comment - I think we also constantly test/push those limits (whatever they might be) and sometimes we are successful and sometimes not, but we operate in a bubble with relative walls, and from what I have heard from others, we never really give up for long!

 

[Don Quichotte]

I have a neuromuscular disorder that causes muscle fatigue.
As for a long time it was "unexplained" I had numerous tests.
One was a cardio-pulmonary exercise test a few years ago.
At the time I had that test, I still managed (somehow) to work full time, do rounds and even walk up a flight of steps, during my better periods.
I had the test on a relatively good day. At that time I was able to drive on my own and walk the distance from the parking lot to the pulmology unit at a reasonable pace. Although I was unable to walk on a treadmill, so had the test on a bicycle.
Prior to the CPT, my standard respiratory tests were completely normal, although my MVV (which is how fast and hard you can breath during one minute) was 40% of predicted. After a very short period (which to me felt like hours of cycling uphill) the pulmonologist told me to stop. He had to carry me to the examination bed as I could no longer walk on my own, and it took me nearly an hour to recover. My VO2 max was 7.3. He thought it was impossible and there has to be some mistake, so he repeated the test a month later (that was about the time it took me to recover from this significant effort of riding the bike as fast as I can for about 5 minutes) and the second test was 6.3.
Fortunately, he did not want to repeat it for a third time.

I remember the look of surprise on his face and his question: "But, how in the world can you function like that?"
Well, I probably couldn't, as a few months later I was no longer able to walk without assistance and required intermittent respiratory support.

He also gave me a piece of advice- For you walking a short distance is like running the marathon for someone who is healthy and fit, and just take into account that you can't run a marathon every day.

The point I am trying to make is that when my VO2 max. was measured, I was still leading a very active life. In retrospect, if at all, it was probably my constant efforts to push myself and do as much as I can (which was gradually less and less) and not realizing that doing that I was putting my body under the stress of running a marathon every day.

Like many physicians I thought at the time, that physical exercise is the ultimate cure for every human condition and ailment. I thought that the more I will use my muscles, the stronger and less fatigued they will get. It took me a very long time to understand that in my specific case it was the exact opposite.

No one pushed me to do GET. In fact my physicians were quite concerned with my repeat attempts. But, even when I required respiratory support and had difficulty supporting myself, I convinced them to let me walk on a treadmill, supported by a vest with a pully that took off some of my weight and prevented me from falling while using my respirator.

Only after I crashed for a few weeks, and required a more advanced respirator did I start to realize that something in what I was trying to do was probably wrong.
I was very fortunate soon after to reach an amazing neurologist who told me that I should always do a little less than I think I am capable of.
Under his care, for the first time in quite a few years, I am gradually doing better instead of continuously worse.

After more than a year in which I avoided any type of physical exercise meant to improve my strength and endurance and use my muscles in the minimum amount required, I am slowly becoming stronger and have more endurance.
Which is sometimes a "trap" and I have to very cautious not to get too enthusiastic and push myself to do more.
I know that at least until I get significantly better (which may or may not happen) for me physical exertion is worse that a cake with whipped cream for a patient with diabetes.

It doesn't surprise me that there are other patients who like me only get worse with physical exertion. It also doesn't surprise me that the medical community finds it hard to understand this, if my training made it hard for me to understand what was happening to my own body.

There are many conditions in which lying in bed in complete bed-rest is hazardous. That is why there was a significant paradigm shift from bed-rest to mobilization as soon as possible. It definitely improved the outcome of women after child-birth, patients after many surgical procedures, myocardial infarction and numerous other conditions.
But, as I have said many times. This "one size fits all" approach harmed other patients.

No matter how many studies will show that a significant number of patients do better with early ambulation and physical exercise, there will still be that small minority that do worse.
The stregths of RCTs is that they give accurate information about most of the patient population, but this is also their weakness, they totally ignore those that do not fit.

As much as you try you are not going to be able to find "evidence based medicine" for those with unusual or rare polymorphisms and diseases. You are not going to find large scale studies showing that people who ride on a bike for 5 minutes collapse and it takes them a month to recover. Quite likely, if you take an average group of a 1000 women none is going to respond in that way. Any attempts at trying to find "evidence" for that will ultimately fail.

By the same token phenyl-alanine is a very safe substance for children. Only if your sample of 1000 happens to have one patient with PKU will you see harm. And still it will not significantly change the statistics if 1/1000 is adversely effected by it.

Studies published in the medical literature are an excellent map, but they are not the terrain. Therefore if you see a pond of water it is there, even if it not marked on your map.
There is enough evidence that a minority of people do not benefit from exercise, but the exact opposite.
It does not and should not change the recommendation for exercise for most of the population. It should change the "all".

 

[Firestormm]

Just caught this on the news this morning, adds a bit to the discussion I thought:

http://www.bbc.co.uk/news/health-19004412
Medical students 'not taught activity benefits'

'The researchers, led by Dr Richard Weiler, of University College London Hospitals, write in the journal: "A basic understanding of the benefits of physical activity, how to effectively promote it (with behaviour change techniques), and combat sedentary behaviour for different age groups underpin the ability of future doctors to manage modern non-communicable chronic diseases and follow clinical guidelines."

And they suggest there is a "major disconnect" between undergraduate medical education, clinical guidelines for long-term conditions and national policy. They call for dedicated teaching time on physical activity for all medical students, as a matter of urgency.'

 

[Firestormm]

I have a neuromuscular disorder that causes muscle fatigue.
As for a long time it was "unexplained" I had numerous tests.
One was a cardio-pulmonary exercise test a few years ago.
At the time I had that test, I still managed (somehow) to work full time, do rounds and even walk up a flight of steps, during my better periods.
I had the test on a relatively good day. At that time I was able to drive on my own and walk the distance from the parking lot to the pulmology unit at a reasonable pace. Although I was unable to walk on a treadmill, so had the test on a bicycle.
Prior to the CPT, my standard respiratory tests were completely normal, although my MVV (which is how fast and hard you can breath during one minute) was 40% of predicted. After a very short period (which to me felt like hours of cycling uphill) the pulmonologist told me to stop. He had to carry me to the examination bed as I could no longer walk on my own, and it took me nearly an hour to recover. My VO2 max was 7.3. He thought it was impossible and there has to be some mistake, so he repeated the test a month later (that was about the time it took me to recover from this significant effort of riding the bike as fast as I can for about 5 minutes) and the second test was 6.3.
Fortunately, he did not want to repeat it for a third time.

I remember the look of surprise on his face and his question: "But, how in the world can you function like that?"
Well, I probably couldn't, as a few months later I was no longer able to walk without assistance and required intermittent respiratory support.

He also gave me a piece of advice- For you walking a short distance is like running the marathon for someone who is healthy and fit, and just take into account that you can't run a marathon every day.

The point I am trying to make is that when my VO2 max. was measured, I was still leading a very active life. In retrospect, if at all, it was probably my constant efforts to push myself and do as much as I can (which was gradually less and less) and not realizing that doing that I was putting my body under the stress of running a marathon every day.

Like many physicians I thought at the time, that physical exercise is the ultimate cure for every human condition and ailment. I thought that the more I will use my muscles, the stronger and less fatigued they will get. It took me a very long time to understand that in my specific case it was the exact opposite.

No one pushed me to do GET. In fact my physicians were quite concerned with my repeat attempts. But, even when I required respiratory support and had difficulty supporting myself, I convinced them to let me walk on a treadmill, supported by a vest with a pully that took off some of my weight and prevented me from falling while using my respirator.

Only after I crashed for a few weeks, and required a more advanced respirator did I start to realize that something in what I was trying to do was probably wrong.
I was very fortunate soon after to reach an amazing neurologist who told me that I should always do a little less than I think I am capable of.
Under his care, for the first time in quite a few years, I am gradually doing better instead of continuously worse.

After more than a year in which I avoided any type of physical exercise meant to improve my strength and endurance and use my muscles in the minimum amount required, I am slowly becoming stronger and have more endurance.
Which is sometimes a "trap" and I have to very cautious not to get too enthusiastic and push myself to do more.
I know that at least until I get significantly better (which may or may not happen) for me physical exertion is worse that a cake with whipped cream for a patient with diabetes.

It doesn't surprise me that there are other patients who like me only get worse with physical exertion. It also doesn't surprise me that the medical community finds it hard to understand this, if my training made it hard for me to understand what was happening to my own body.

There are many conditions in which lying in bed in complete bed-rest is hazardous. That is why there was a significant paradigm shift from bed-rest to mobilization as soon as possible. It definitely improved the outcome of women after child-birth, patients after many surgical procedures, myocardial infarction and numerous other conditions.
But, as I have said many times. This "one size fits all" approach harmed other patients.

No matter how many studies will show that a significant number of patients do better with early ambulation and physical exercise, there will still be that small minority that do worse.
The stregths of RCTs is that they give accurate information about most of the patient population, but this is also their weakness, they totally ignore those that do not fit.

As much as you try you are not going to be able to find "evidence based medicine" for those with unusual or rare polymorphisms and diseases. You are not going to find large scale studies showing that people who ride on a bike for 5 minutes collapse and it takes them a month to recover. Quite likely, if you take an average group of a 1000 women none is going to respond in that way. Any attempts at trying to find "evidence" for that will ultimately fail.

By the same token phenyl-alanine is a very safe substance for children. Only if your sample of 1000 happens to have one patient with PKU will you see harm. And still it will not significantly change the statistics if 1/1000 is adversely effected by it.

Studies published in the medical literature are an excellent map, but they are not the terrain. Therefore if you see a pond of water it is there, even if it not marked on your map.
There is enough evidence that a minority of people do not benefit from exercise, but the exact opposite.
It does not and should not change the recommendation for exercise for most of the population. It should change the "all".

One of the best comments I have read for a while. Thanks Don very much

 

[biophile]

http://www.bbc.co.uk/news/health-19004412

Researchers surveyed the UK's 31 medical schools and found instruction was "sparse or non-existent". [...] The total amount of time spent on teaching physical activity was "minimal", the research suggests, averaging just four hours compared with an average of 109 hours for pharmacology (the effects and uses of drugs).

So, still much more than for ME/CFS then?

And they suggest there is a "major disconnect" between undergraduate medical education, clinical guidelines for long-term conditions and national policy. They call for dedicated teaching time on physical activity for all medical students, as a matter of urgency.

Is there any greater disconnect in the medical profession than the nonchalant attitudes and sparse funding for ME/CFS research vs actual symptoms/impairments and societal burden?

 

[Firestormm]

I think it goes some way to emphasise that 'exercise' being 'good' is so embedded in the psyche of the medical profession, that (as Don says above), it becomes the only answer for 'deconditioned' patients in terms of treatment. Or to put it another way - if you can't (or are deemed as 'won't') exercise - you are considered 'deconditioned' and in need of an exercise programme to return you to health.

Now these generalisations may not be applied in practice where a professional is working with a patient to improve mobility or muscle responses or to overcome e.g. atrophy. At the ground level it is more likely to take into account the individual patients situation with regards to what they can and can't do and reasonable goals. But the general meme is 'Exercise overcomes deconditioning and is Good'. However, if you are dealing with a group of patients in a trial that is attempting to qualify this statement, well, we have seen how it doesn't quite return the ringing endorsement that might have been expected.

If you took a group of severe patients with ME and collectively applied some activity management involving exertions of a type that were relative and relevant to their situation, and then after a period reported on progress, you might return 'better' results. Particularly, I would suggest, if this involved one-to-one therapist intervention. Then again you might not of course - we are all still individuals and not people suffering from a predictable and known viral infection for example. Apply a similar regime to 'moderate' and 'mild' and you will perhaps improve those scores but again you might not.