Generally cognitive activity is unrestricted in bed rest studies. Did PACE offer any decent evidence to back up their bold claims? 'Mental deconditioning' is a new one to me, so thanks for that info. I should stress I'm not using decon evidence to debunk all of CBT, just the parts of it that rely on decon, which don't appear to be backed up by published evidence.
Is there any evidence that deconditioning alone causes pain and fatigue?
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The information I quoted was from both the CBT participant and GET participant manuals. I just had a quick look for references, but could not find any in either manual (neither inline citations nor a list of references at the end). In general, there is a list of references at the end of the therapist versions of the CBT and GET manuals. The GET therapist manual even states on p78 that when participants ask for further references or suggested websites:
There is a section titled "Physiological aspects of CFS/ME" on p9-13 of the CBT participant manual and p13-20 of the GET participant manual, where I pulled the quotes for my previous post. The wording of the two versions are occasionally different (GET focuses more on physiology), but I have looked at this before so it will not be too much trouble to post notes I have made on an amalgamated version. I will only include the deconditioning related information here, but note that only the GET version mentions GET as the solution.
The section on "Autonomic arousal in CFS/ME" (p14-16 of the CBT participant manual and p21-24 of the GET participant manual) discusses the physical and mental effects of anxiety/stress/perceived-threats. Furthermore, it alludes that autonomic arousal can help to explain post-exertional symptoms:
The GET version adds: "The autonomic response is your body's way of preparing you for action. However, if you don't take physical action, symptoms can result. You can therefore use GET as a way of dealing constructively with this response."
IIRC, Powell's "Liverpool CF/CFS clinic handout", which PACE acknowledges was used in their manuals, also mentions that deconditioning either increases autonomic arousal or increases the autonomic response to exertion? As a finishing side note to my previous post, mental functioning is also discussed in the above sections on autonomic arousal, alteration of the biological clock, disturbance of cortisol production, and disturbance of the sleep-wake rhythm.[/b]
There is a section titled "Physiological aspects of CFS/ME" on p9-13 of the CBT participant manual and p13-20 of the GET participant manual, where I pulled the quotes for my previous post. The wording of the two versions are occasionally different (GET focuses more on physiology), but I have looked at this before so it will not be too much trouble to post notes I have made on an amalgamated version. I will only include the deconditioning related information here, but note that only the GET version mentions GET as the solution.
The section on "Autonomic arousal in CFS/ME" (p14-16 of the CBT participant manual and p21-24 of the GET participant manual) discusses the physical and mental effects of anxiety/stress/perceived-threats. Furthermore, it alludes that autonomic arousal can help to explain post-exertional symptoms:
The GET version adds: "The autonomic response is your body's way of preparing you for action. However, if you don't take physical action, symptoms can result. You can therefore use GET as a way of dealing constructively with this response."
IIRC, Powell's "Liverpool CF/CFS clinic handout", which PACE acknowledges was used in their manuals, also mentions that deconditioning either increases autonomic arousal or increases the autonomic response to exertion? As a finishing side note to my previous post, mental functioning is also discussed in the above sections on autonomic arousal, alteration of the biological clock, disturbance of cortisol production, and disturbance of the sleep-wake rhythm.[/b]
Thanks for such impressive and helpful quotes & notes.
So, they did use the argument of the effect on inactivity on healthy individuals, but cherry-picked or mis-represented the evidence, or just merely speculated wildly to back up their hypothesis. Now that I'm a bit more familiar with the bed rest and other literature it's a bit easier to see the sleight of hand. Here's a rebuttal to some of the quotes you highlighted.
The consistent approach here seems to be come up with an idea that seems plausible eg inactivity causes deconditioning which leads to all sorts of symptoms, either at rest or when attempting activity, and make a leap of faith that this explains much of CFS. The evidence offered is weak, indirect and cherry-picked - where it exists at all.
I could go on in the same vein about the rest of their evidence, but don't see the point...
So, they did use the argument of the effect on inactivity on healthy individuals, but cherry-picked or mis-represented the evidence, or just merely speculated wildly to back up their hypothesis. Now that I'm a bit more familiar with the bed rest and other literature it's a bit easier to see the sleight of hand. Here's a rebuttal to some of the quotes you highlighted.
"Over time, reduced or irregular activity and increased periods of rest causes physical changes in the body"...
Reality:
this bit is absolutely right, there is extensive evidence that bed rest leads to numerous measurable physiological changes.
"These changes cause unpleasant sensations and symptoms [that can be very distressing]"...
Reality: However, there is surprisingly little, if any, evidence for CFS-like symptoms in bed rest studies. In fact I was struck by how little mention there was of physical fatigue, pain, mental fatigue or cognitive problems. This omission is particularly striking as most bed rest studies on healthy individuals were carried out for US and Russian Space programmes, specifically to look at any negative effects of microgravity* on the ability of astronauts to function. And CFS is defined by it's serious impact on ability to function; if you had these symptoms, you would notice.
[* Bed Rest has been shown to be the best available long-term proxy for microgravity in Earth-bound studies]
"It is important to point out that these changes are reversible with physical rehabilitation and/or (graded) exercise."
Reality: Yes, the changes brought on in healthy adults by bed rest are reversible with physical rehabilitation, but these changes don't include CFS-like symptoms
Reality:
this bit is absolutely right, there is extensive evidence that bed rest leads to numerous measurable physiological changes."These changes cause unpleasant sensations and symptoms [that can be very distressing]"...
Reality:
However, there is surprisingly little, if any, evidence for CFS-like symptoms in bed rest studies. In fact I was struck by how little mention there was of physical fatigue, pain, mental fatigue or cognitive problems. This omission is particularly striking as most bed rest studies on healthy individuals were carried out for US and Russian Space programmes, specifically to look at any negative effects of microgravity* on the ability of astronauts to function. And CFS is defined by it's serious impact on ability to function; if you had these symptoms, you would notice.[* Bed Rest has been shown to be the best available long-term proxy for microgravity in Earth-bound studies]
"It is important to point out that these changes are reversible with physical rehabilitation and/or (graded) exercise."
Reality:
Yes, the changes brought on in healthy adults by bed rest are reversible with physical rehabilitation, but these changes don't include CFS-like symptoms
"1. Changes in muscle function
.... As reduced activity leads to less efficient muscles (reduced strength, tone and size), it is more difficult for the muscles to squeeze the blood back to the heart causing blood to pool in the lower part of the legs. Pooling of blood can cause pain and a feeling of heaviness both during activity and rest."
Reality: No evidence at all in bed rest studies of pain; some of heaviness but only briefly after longer-term bed rest and this only lasted a few days. There is no evidence that such pooling is happening in CFS patients, or that it is responsible for pain/heaviness.
"When muscles are not used regularly, they become weaker or unfit/deconditioned. One week of rest reduces strength in large muscles by 10%. When these muscles contract during activity, uneven stresses are produced. This may result in a feeling of weakness and instability/unsteadiness followed by delayed pain and discomfort."
Reality: Studies have found that after 3 months (13 weeks) of bed rest, fitness declines by only a third, and that's far more resting than is typical for CFS patients in outpatient clinics. There's no evidence that the 'low-normal' levels of fitness in CFS patients could account for such weakness/delayed pain and discomfort.
Claim: "However in all individuals, muscle pain and stiffness are a natural consequence and normal response to the beginning a new exercise programme or when unaccustomed physical activity or exercise is taken."
Reality: yes, we know that and are familiar with it; PEM is something else altogether.
.... As reduced activity leads to less efficient muscles (reduced strength, tone and size), it is more difficult for the muscles to squeeze the blood back to the heart causing blood to pool in the lower part of the legs. Pooling of blood can cause pain and a feeling of heaviness both during activity and rest."
Reality:
No evidence at all in bed rest studies of pain; some of heaviness but only briefly after longer-term bed rest and this only lasted a few days. There is no evidence that such pooling is happening in CFS patients, or that it is responsible for pain/heaviness."When muscles are not used regularly, they become weaker or unfit/deconditioned. One week of rest reduces strength in large muscles by 10%. When these muscles contract during activity, uneven stresses are produced. This may result in a feeling of weakness and instability/unsteadiness followed by delayed pain and discomfort."
Reality:
Studies have found that after 3 months (13 weeks) of bed rest, fitness declines by only a third, and that's far more resting than is typical for CFS patients in outpatient clinics. There's no evidence that the 'low-normal' levels of fitness in CFS patients could account for such weakness/delayed pain and discomfort.Claim: "However in all individuals, muscle pain and stiffness are a natural consequence and normal response to the beginning a new exercise programme or when unaccustomed physical activity or exercise is taken."
Reality:
yes, we know that and are familiar with it; PEM is something else altogether.
"2. Changes in the cardiovascular system
The cardiovascular system (which incorporates the heart and blood vessels) becomes out of condition very quickly with rest. The longer you rest, the more changes occur.
Reality: Although this is broadly true, the changes in the cardiovascular system are more dramatic than the changes in fitness levels, which is the key issue here.
These physical changes may result in making you feel breathless or dizzy when exercising or undertaking physical activity, and contribute to your fatigue.
Reality: No evidence for this in bed rest studies, apart from those of 6 months or more which hardly apply to the CFS patients seen as outpatients. And no evidence at all that deconditioning driven by inactivity causes these symptoms in CFS.
The cardiovascular system (which incorporates the heart and blood vessels) becomes out of condition very quickly with rest. The longer you rest, the more changes occur.
Reality: Although this is broadly true, the changes in the cardiovascular system are more dramatic than the changes in fitness levels, which is the key issue here.
These physical changes may result in making you feel breathless or dizzy when exercising or undertaking physical activity, and contribute to your fatigue.
Reality:
No evidence for this in bed rest studies, apart from those of 6 months or more which hardly apply to the CFS patients seen as outpatients. And no evidence at all that deconditioning driven by inactivity causes these symptoms in CFS.
I could go on in the same vein about the rest of their evidence, but don't see the point...
Their willingness to do this as part of attempt to 'manage' patients from a position of medical authority is pretty sickening. "It may be that... alien organisms grown by the government and implanted in to specific members of the public are causing you CFS". That is true, but...
Just thought I'd comment on some more of the myths that Biophile has picked out:
"7. Changes in mental functioning
Prolonged rest deprives people of intellectual stimulation and has a dulling effect on intellectual activity. Excessive rest may even affect the way our brain cells make connections with each other. This may impair concentration, memory, and the ability to find the correct word.
Reality: Without references, it's hard to know what they are talking about, but I've never come across any evidence for this. Have I missed something, or is this an example of @Esther12's Aliens? More to the point, I wasn't aware that most CFS patients were even assumed to excessively avoid intellectual activity. Obviously doesn't apply to anyone on this forum...
"GET has been shown to improve mental functioning.
Reality: I did find one study with evidence that GET can modestly improve some mental functions in healthy older adults, which is not the same thing - not seen any that it helps mental function in CFS. Have I missed something?
Actually, I did find one paper making the same link between GET helping mental functioning (a bit) in healthy adults, therefore deconditioning must do the opposite, citing the reference I've linked to in the previous paragraph, but no hard evidence for it. That's quite common in the deconditioning literature; start from a theory and assume it's true without doing the experiment.
Prolonged rest deprives people of intellectual stimulation and has a dulling effect on intellectual activity. Excessive rest may even affect the way our brain cells make connections with each other. This may impair concentration, memory, and the ability to find the correct word.
Reality:
Without references, it's hard to know what they are talking about, but I've never come across any evidence for this. Have I missed something, or is this an example of @Esther12's Aliens? More to the point, I wasn't aware that most CFS patients were even assumed to excessively avoid intellectual activity. Obviously doesn't apply to anyone on this forum..."GET has been shown to improve mental functioning.
Reality:
I did find one study with evidence that GET can modestly improve some mental functions in healthy older adults, which is not the same thing - not seen any that it helps mental function in CFS. Have I missed something?Actually, I did find one paper making the same link between GET helping mental functioning (a bit) in healthy adults, therefore deconditioning must do the opposite, citing the reference I've linked to in the previous paragraph, but no hard evidence for it. That's quite common in the deconditioning literature; start from a theory and assume it's true without doing the experiment.
The section on "Autonomic arousal in CFS/ME" (p14-16 of the CBT participant manual and p21-24 of the GET participant manual) discusses the physical and mental effects of anxiety/stress/perceived-threats. Furthermore, it alludes that autonomic arousal can help to explain post-exertional symptoms:
PACE said:
Reality: Well, personally I've never experienced flu-like symptoms after either physical or mental exertion when healthy - and at least when I was a student I did a lot of both. And I've never seen any research supporting this.
The GET version adds: "The autonomic response is your body's way of preparing you for action. However, if you don't take physical action, symptoms can result. You can therefore use GET as a way of dealing constructively with this response."
Reality: This makes the leap of faith that GET works, which is the cart before the horse.
PACE said:
During periods of prolonged physical or mental exertion, there is increased activity of the nervous systems and increased adrenaline production. This leads to symptoms similar to those experienced in a flu-like illness, such as aches and pains, headache, sweating, feeling hot and cold, chest tightness and sore throat. If a person experiences these symptoms after activity, they may reduce or avoid activities, as they may believe that they are coming down with flu or a cold. Limiting activity can perpetuate the physical effects of anxiety and lead to a further reduction of fitness and muscle strength.
Reality:
Well, personally I've never experienced flu-like symptoms after either physical or mental exertion when healthy - and at least when I was a student I did a lot of both. And I've never seen any research supporting this.The GET version adds: "The autonomic response is your body's way of preparing you for action. However, if you don't take physical action, symptoms can result. You can therefore use GET as a way of dealing constructively with this response."
Reality:
This makes the leap of faith that GET works, which is the cart before the horse.
Does anyone else find this in isolation an astonishing statement to put in such a manual. Since when was it appropriate to tell a patient that you can provide no supporting evidence for the treatment you are providing, it is up to them to find evidence against it, while simultaneously rubbishing all other sources. I know the NHS has a somewhat patronising view of patients but I have never seen anything this dismissive and would never accept such an attitude from my GP for example.
I accept that most patients would not generally ask for supporting evidence but surely if they do it is irresponsible not to provide it? This reads like the sort of get rich quackery that would normally quite rightly be derided by NHS practitioners - "just relax and trust me".
I accept that most patients would not generally ask for supporting evidence but surely if they do it is irresponsible not to provide it? This reads like the sort of get rich quackery that would normally quite rightly be derided by NHS practitioners - "just relax and trust me".
Jut to add I agree with all the citicisms here - and for all the reasons given. It's pretty obvious AFTER any illness and cure effected it's best to move about and regain muscle tone again. Doesn't everyone do it automatically without CBT or GET. More time spent on addressing the illness itself would only make this lot relevant for ME.
So they are finally admitting that their claims about GET have no scientific basis? (And, more specifically, that the GET results in PACE were actually pathetic and lacking genuine therapeutic value?)Good.
Now if only they would take the next logical (and ethical) step and resign en masse.
•••••••••••
Like a lot of patients, I know from hard first hand experience that de-conditioning simply cannot explain my problems.
I was definitely more than sufficiently physically active during the first few years of sickness to prevent any possible de-conditioning. But I remained sick, and indeed got worse.
And I have continued to be as physically active as I can, and continue to remain sick.
It is quite clear that (classical) de-conditioning is simply not a primary explanation of ME, and hence it offers no major therapeutic possibilities.
Continuing to recommend and advocate GET under these circumstances is fraudulent and highly irresponsible.
This is just an update on an earlier post on a paper that found:
After 90 days of bed rest healthy volunteers are more deconditioned than CFS patients but less troubled by fatigue
Finally got hold of the full text, and I wanted to be sure that after 90 days of bed rest healthy volunteers were at least as deconditioned as CFS patients - there was some doubt as bed rest studies generally use very fit people.
Fitness as measured by VO2max
After 90 days of bed rest (all males): 26.7 ml O2/kg/min
Fulcher & White CFS patients (75% female): 30.6
So CFS patients before starting GET programmes are substantially fitter than people who have undergone bedrest for 3 months. In fact, as men should have VO2 max scores around 20% higher than women of the same age, the difference in fitness is even more striking. Yet as I've pointed out earlier in this thread, significant problems with fatigue are not reported after 3 months of bed rest either at rest or on reambulation.
After 90 days of bed rest healthy volunteers are more deconditioned than CFS patients but less troubled by fatigue
Finally got hold of the full text, and I wanted to be sure that after 90 days of bed rest healthy volunteers were at least as deconditioned as CFS patients - there was some doubt as bed rest studies generally use very fit people.
Fitness as measured by VO2max
After 90 days of bed rest (all males): 26.7 ml O2/kg/min
Fulcher & White CFS patients (75% female): 30.6
So CFS patients before starting GET programmes are substantially fitter than people who have undergone bedrest for 3 months. In fact, as men should have VO2 max scores around 20% higher than women of the same age, the difference in fitness is even more striking. Yet as I've pointed out earlier in this thread, significant problems with fatigue are not reported after 3 months of bed rest either at rest or on reambulation.
A normal average VO2max for a group of ME-patients is 20 ml/kg/min, not 30. My own value is 15.
Most likely, nobody in that group has ME.
Most likely, nobody in that group has ME.
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Fantastic work, oceanblue. Well done for digging this up.
As you'll see from earlier posts in this thread and based on the studies I've been able to find, there are range of values given for CFS (not seen any specifically for ME), but most are in the low normal range, like the one I quoted in my post above, which was from an outpatient clinic. Which studies did you have in mind for 20ml/kg/min?
Thanks to all who joined in this thread, which got more interest than I was expecting.
I'm planning to write a summary piece about the role of deconditioning in CFS, but first I'm going through doing any washing up from this thread. E.g:
This study provides some interesting data on recovery rates from serologically-confirmed Infectious Mononucleosis on a large cohort with an objective outcome measure (full-time return to work).
However, the advice in the conclusion is unfounded and based on a misinterpretation of the literature, deliberate or otherwise. Essentially they are saying employees should be encouraged back to work regardless of how they feel, with this as the 'evidence':
The most recent reference [17, from 2005] actually says:
Meanwhile a review not mentioned in the paper says:
In other words, the evidence for returning to activity is based on advice to athletes (they offer no evidence relating to non-athletes), which is not conclusive and stresses the need for being free of symptoms and having good energy levels.
Yet again there is a presumption that the problem with delayed recovery is due to physical deconditioning and therefore people should resume activity regardless - without any evidence backing up the presumption.
Still tidying up:
Reality: I didn't find any references to these symptoms in any of the bed rest studies I found. Furthermore, most outpatients won't be affected by prolonged bed rest and headward shift of fluids, yet can still have problems with noise (I do) or light.
I'm planning to write a summary piece about the role of deconditioning in CFS, but first I'm going through doing any washing up from this thread. E.g:
This study provides some interesting data on recovery rates from serologically-confirmed Infectious Mononucleosis on a large cohort with an objective outcome measure (full-time return to work).
However, the advice in the conclusion is unfounded and based on a misinterpretation of the literature, deliberate or otherwise. Essentially they are saying employees should be encouraged back to work regardless of how they feel, with this as the 'evidence':
The most recent reference [17, from 2005] actually says:
Meanwhile a review not mentioned in the paper says:
In other words, the evidence for returning to activity is based on advice to athletes (they offer no evidence relating to non-athletes), which is not conclusive and stresses the need for being free of symptoms and having good energy levels.
Yet again there is a presumption that the problem with delayed recovery is due to physical deconditioning and therefore people should resume activity regardless - without any evidence backing up the presumption.
Still tidying up:
Reality:
I didn't find any references to these symptoms in any of the bed rest studies I found. Furthermore, most outpatients won't be affected by prolonged bed rest and headward shift of fluids, yet can still have problems with noise (I do) or light.
fwiw, there is this which seems to be pertinent:
http://www.ncbi.nlm.nih.gov/pubmedh...07-16-people-with-cancer-need-more-exercise-/
http://www.ncbi.nlm.nih.gov/pubmedh...07-16-people-with-cancer-need-more-exercise-/
Thanks for this. It seems like a good idea to promote exercise as helpful, where it is appropriate, but there does seem to be a tendency to hype the results. A 2010 Cochrane reviewconcluded:
but the effect size was small at 0.23.
A 2012 BMJ meta-analysis also found a positive effect on physical function and a reduction in fatigue.
It's also worth noting that the advice for exercising in cancer patients stresses the need to adapt the exercise to take account of symptoms resulting from the exercise.
but the effect size was small at 0.23.
A 2012 BMJ meta-analysis also found a positive effect on physical function and a reduction in fatigue.
It's also worth noting that the advice for exercising in cancer patients stresses the need to adapt the exercise to take account of symptoms resulting from the exercise.
Damn it, CFS research has ruined my ability to take other research at face value! These statements about cancer could be as dubious as those made for exercise and CFS. Sounds like hyperbole to me, and the general popularity of bandying around correlation as causation has me cautious about the claimed longitudinal benefits. The several systematic reviews I've skimmed through (quick PubMed search plus oceanblue's post) don't seem to support the hype, although some benefits in multiple domains seem probable.
I wonder how many patients have gone to their doctor for ME/CFS and were told about the awesome unquestionable "wonder-drug type benefits" (The Telegraph) / magical powers of exercise to heal, due to the PACE Trial or reports on similar research. I myself have been told repeatedly about such wonderful effects, I "believed", but here I am years later struggling to climb one or two flights of stairs without leaning on the rails. I now know it was quackery.
There are similar cautions in CBT/GET protocols, although there may be large variabilities in how much symptom exacerbation is tolerated in practice before adjustment, and in how much is just lip service given to tailor-babble.
I wonder how many patients have gone to their doctor for ME/CFS and were told about the awesome unquestionable "wonder-drug type benefits" (The Telegraph) / magical powers of exercise to heal, due to the PACE Trial or reports on similar research. I myself have been told repeatedly about such wonderful effects, I "believed", but here I am years later struggling to climb one or two flights of stairs without leaning on the rails. I now know it was quackery.
There are similar cautions in CBT/GET protocols, although there may be large variabilities in how much symptom exacerbation is tolerated in practice before adjustment, and in how much is just lip service given to tailor-babble.
unsurprisingly, these were my thoughts as well
I'm supposed to be working on something else, though, so didn't have time to look beyond the first of the dubious-appearing claims in the pdf and actually pull up some of the research.
Thanks for your comments on these and through the whole thread
I'm supposed to be working on something else, though, so didn't have time to look beyond the first of the dubious-appearing claims in the pdf and actually pull up some of the research.
Thanks for your comments on these and through the whole thread
Over on the PACE thread Dolphin posted quotes from the PACE GET manual suggesting GET pays as little heed as possible to symptoms:
Not sure I have ever seen any evidence of this being put to the test. So there may be no published evidence of harm, but I'm not sure anyone has ever done the research to investigate this properly. Worth pointing out (see posts above) that while there is evidence of rapid muscle loss on bed rest, the loss of fitness - or work capability - is much slower, around 27% after 3 months, or 0.3% a day.
Not sure I have ever seen any evidence of this being put to the test. So there may be no published evidence of harm, but I'm not sure anyone has ever done the research to investigate this properly. Worth pointing out (see posts above) that while there is evidence of rapid muscle loss on bed rest, the loss of fitness - or work capability - is much slower, around 27% after 3 months, or 0.3% a day.