What does deconditioning look like? - ME/CFS Skeptic blog

[ME/CFS Skeptic]

Just wrote a blog about what deconditioning looks like and how it differs from ME/CFS.
https://mecfsskeptic.com/what-does-deconditioning-look-like/

Interestingly the best evidence on deconditioning comes from NASA bed rest studies. Head-down bed rest was used as a proxy for the low gravity that astronauts endured in space.

Conclusion of the blog post:

In conclusion, there is no evidence to suggest that low activity levels predispose people to developing ME/CFS. Deconditioning does not cause extreme fatigue, widespread pain, or sensitivity to light and sound. Patients who are more deconditioned than ME/CFS patients do not experience these symptoms. While exercise is a fast and effective cure for deconditioning, it fails to help ME/CFS patients get fitter or less ill. And although deconditioning may contribute to some ME/CFS symptoms such as orthostatic intolerance, it is unlikely to be the main explanation for these patients’ disability.

Would be interested to hear what other think and if there are any other studies worth mentioning that we overlooked.

 

[ME/CFS Skeptic]

Twitter summary here:
https://twitter.com/user/status/1824093770872238458


1) Just published a new blog post on what severe deconditioning looks like and how it is different from ME/CFS.

2) Interestingly the best evidence on deconditioning comes from NASA bed rest studies. Head-down bed rest was used as a proxy for the low gravity that astronauts endured in space.

3) These NASA studies show that deconditioning leads to profound physiological changes including a reduction in blood volume, decreased VO2max, insulin resistance, muscle loss, bone density reduction, etc.

There is, however, almost no mention of disabling symptoms

4) Sleeping problems and tiredness are noted but in a severity that is more like jetlag than ME/CFS. Studies mention “easy fatigability”, “only moderate signs of fatigue”, or that “mild fatigue was noted for several months and then disappeared.”

5) Interestingly, excessive fatigue is also absent in patients who are severely deconditioned. A study on spinal cord injury, for example, found that “the prevalence of fatigue (total fatigue (TF)) did not differ between the study population and the norm”

6) Bed rest studies do not mention ME/CFS symptoms such as post-exertional malaise, widespread pain, and light and noise sensitivity. This is curious because the PACE trial manuals convinced patients that such symptoms are due to deconditioning.

7) There is one notable exception: orthostatic intolerance is reported in most bed rest studies, with some finding dizziness and (nearly) fainting when standing and heart rate increases > 30 bpm.

8) Another notable difference: while exercise is a fast and effective cure for deconditioning, it fails to help ME/CFS patients get fitter or less ill.

9) Based on VO2max values, ME/CFS patients are also not extremely deconditioned. Comparing them to US reference values would put them at the lower end of normal, somewhere between the lowest 25th and 10th percentile for their age and sex group.

10) Ironically, the patients in the first ME/CFS exercise trials were not deconditioned and the authors reported: “we found no significant association between feeling better after graded exercise treatment and becoming stronger or fitter.”

11) Lastly, we looked at longitudinal studies that followed up on healthy people before they developed (self-reported) ME/CFS. These studies indicate that low exercise levels are not a risk factor for developing ME/CFS.

 

[ME/CFS Skeptic]

Many thanks to oceanblue on the Phoenix Rising forum for analyzing the literature more than 10 years before me. This was very helpful in writing the blog.

 

[Trish]

A worthwhile topic to study, thanks, @ME/CFS Skeptic.

I haven't read your article yet. Just a couple of points on your twitter thread.

This is curious because the PACE trial manuals convinced patients that such symptoms are due to deconditioning.

They tried to convince patients, there's no evidence on whether they did or not succeed.

10) Ironically, the patients in the first ME/CFS exercise trials were not deconditioned and the authors reported: “we found no significant association between feeling better after graded exercise treatment and becoming stronger or fitter.”

I'm not sure which bit of this you are saying is ironic.

 

[Trish]

I have now read the article. It is very clearly set out and written, and I think is very worthwhile. I wonder whether a journal would publish it.

 

[Tom Kindlon]

Hope to read this blog post at some stage as I think your output is invariably of a high quality and well worth reading.

Here’s an e-letter I wrote in 2008 in reply to some questionable comments in a paper, which cites some published findings at that stage:

https://bmcpsychiatry.biomedcentral.com/articles/10.1186/1471-244X-6-53/comments
Accumulating evidence that CFS patients were actually more active on average than controls before becoming ill

 

[Andy]

I wonder whether a journal would publish it.

Perhaps @PhysiosforME could help achieve this, given the subject matter?

 

[JemPD]

wow that looks really good, thanks so much for doing it, it will be so useful. People spout the NASA studies to me on occasion so i have bookmarked it!

Just FYI... i think theres a typo?

Unsurprisingly, these studies also found few correlations between improvements in fitness and symptoms such as fatigue. The first exercise major trial for ME/CFS for example, reported: “We found no significant association between feeling better after graded exercise treatment and becoming stronger or fitter.”

shouldnt that be 'first major exercise trial' ??

 

[Tom Kindlon]

Very minor error:
“Scores on the MFI general fatigue and physical fatigue subscales were approximately 10 on a scale from 0 to 20. In comparison ME/CFS patients usually have scores around 18.”

MFI scale is 4-20. So 10 is actually a smaller increase than 10 on a 0-20 scale.

 

[hibiscuswahine]

This is awesome! very well written.

And reading it, some of these studies are maybe where ME Clinicans have got their information about reduced blood volume in ME? I don't know, but the 20% reduction is often quoted by USA clinicians.

 

[Hutan]

great blog @ME/CFS Skeptic - thanks to you both

 

[Sean]

Excellent. Thank you.

Another finding that does not fit the theory is that ME/CFS patients are not extremely deconditioned.​

I think this is one of the most interesting features and important clues about ME. We should, by all conventional understanding, be far more deconditioned than we are. Yet on our good days and weeks, we are able to be much more active straight away.

It is also a serious refutation of the deconditioning claim by the BPS club.

This comment on your blog from Michelle is interesting:

You can become a bit sluggish if you are inactive but for many people with ME its the opposite. You become like a caged lion. Very restless. Its very hard to keep still. Many people with ME develop symptoms like cabin fever. They are desperate from stimulation. They try to do a tiny amount of activity and its like drinking water in a desert. Its very very hard to only do a tiny bit and then stop. This belief that people with ME feel sluggish and find it hard to get moving due to inactivity is ignorance that is dangerous.​

I agree completely with that comment. The problem we have is not that we don't want to move or fear it, it is actually the opposite problem: We want to move, to be active in the broad sense, but can't and have to suppress those drives. A lot of the so called mental health issues in ME/CFS are a normal predictable secondary consequence of this frustrated desire for action and participation in life.

 

[oldtimer]

Excellent. Thank you.

Another finding that does not fit the theory is that ME/CFS patients are not extremely deconditioned.​

I think this is one of the most interesting features and important clues about ME. We should, by all conventional understanding, be far more deconditioned than we are. Yet on our good days and weeks, we are able to be much more active straight away.

It is also a serious refutation of the deconditioning claim by the BPS club.

This comment on your blog from Michelle is interesting:

You can become a bit sluggish if you are inactive but for many people with ME its the opposite. You become like a caged lion. Very restless. Its very hard to keep still. Many people with ME develop symptoms like cabin fever. They are desperate from stimulation. They try to do a tiny amount of activity and its like drinking water in a desert. Its very very hard to only do a tiny bit and then stop. This belief that people with ME feel sluggish and find it hard to get moving due to inactivity is ignorance that is dangerous.​

I agree completely with that comment. The problem we have is not that we don't want to move or fear it, it is actually the opposite problem: We want to move, to be active in the broad sense, but can't and have to suppress those drives. A lot of the so called mental health issues in ME/CFS are a normal predictable secondary consequence of this frustrated desire for action and participation in life.

Michelle's comment describes me to a tee. The frustration I feel when I'm not able to do things is utterly overwhelming. I find it quite impossible to not be active until I come to a complete halt with PEM. Rinse and repeat. But while I can still recover to do it all over again, I don't intend to change. I might die tomorrow - and I'm very, very angry.

 

[Peter T]

I have never understood how believers of the deconditioning model think it can explain the variation within ME. I have a relapsing and remitting form of ME, though over the thirty years of my ME each subsequent relapse has been more severe and each subsequent remission slower and more limited. For most of the course of my ME my experience has been that I do as much or as little as my ME will allow me at that point in time, with surprising little loss in muscle tone or mass, no weight gain and no need to recondition when improving. It always surprised me previously how much fitness I retained following periods of being confined to my bed or to the house, in the past having been able to do such as visiting Tibet and Antarctica in periods of remission without any specific retraining. To go from say spending a year or two housebound to summitting Himalayan peaks in the space of a year or so has for me been one of the mysteries of my ME.

Similarly to go from being able to tour China during a period of remission to getting a dose of flue and over night be bedbound for several years, suggests fitness and conditioning offer little protection from ME.

It is only the current cycle (I am some eight years in), where my relapse left me bedbound for significantly more years than previously and was associated with more marked issues of orthostatic intolerance, temperature control issues and other autonomic features, that has seen me gain weight (though only once I had got practical support with shopping and cooking, as the living on cold baked beans straight from the tin phase was associated with weight loss), develop cardiovascular issues and lose muscle mass. Although now improving slightly this is the first time I can not be sure what is ME and what is unfitness as both in play at the same time, trying to walk more than twenty metres will leave me with weak aching muscles but also trigger PEM. Obviously being now in my mid sixties is also a confounding factor.

 

[Simon M]

Many thanks to oceanblue on the Phoenix Rising forum for analyzing the literature more than 10 years before me. This was very helpful in writing the blog.

You are welcome ;-).

ADDED: there was also some great work by a user called biophile (who is well known for some other work he did under his own name). And somewhere, there is a letter from the very much missed Bob (Robert Courtney) in response to one of the Pace papers (Possibly the one on mediation) that does a brilliant job of taking down the deconditioning argument as an explanation for ME.

I’m looking forward to reading your blog later.

The other thing that struck me about those NASA studies is how quickly and easily the volunteers recovered afterwards .

I once talked to therapists involved in Rehabilitating people after coma. They commented that these people could recover fitness relatively quickly and acknowledged (reluctantly, given their beliefs) that the same did not apply to ME:CFS.

They were also a couple of Russian studies from the 60s/early 70s with similar conclusions.

More recent bedrest studies have incorporated exercise while lying down, so it’s really the earliest studies that are most useful.

 

[Simon M]

I’ve spent nearly a year in total living alongside people who must be even more deconditioned than I am because of severe physical difficulties due to eg MS.

And yet their illness is nothing like ME, they have better stamina/less fatigability (despite most needing bed rest during the day) and do not appear to suffer from post-exceptional malaise.

If the deconditioning theory was correct, hundreds of thousands of people with chronic ill illnesses would automatically develop ME. It doesn’t happen.

For such a half-baked theory to be developed and take hold must require its proponents to hold astonishingly strong beliefs and be unwilling to think critically.

 

[Sasha]

For such a half-baked theory to be developed and take hold must require astonishingly strong beliefs and unwillingness to think critically from its proponents.

Years ago - decades, probably - I heard a patient refer to the 'false beliefs'/deconditioning theory as 'insulting and ridiculous'. I've never heard it described better.

 

[Trish]

I think if the theory on which PACE is based were purely a deconditioning theory it would be easy to counter with excellent articles like this one by @ME/CFS Skeptic.

Unfortunately it's not the sole basis of their theory.
Deconditioning in ME/CFS is seen as part of a viscious cycle of initial deconditioning due to bed rest during an infection, followed by psychosomatic fear avoidance of activity that perpetuates that deconditioning, fed by misperception of normal aches and pains as signs of illness, and faulty effort perception.

So someone who is deconditioned as a result of weeks of experimental bed rest, doesn't have the psychosomatic overlay of faulty effort preception and faulty misintepretation of symptoms leading to exercise avoidance.

GET and CBT for ME/CFS are not solely, or even primarily intended to increase fitness, but to change pwME's symptom perceptions and effort perception. Hence justifying to themselves the inconvenient fact that objective outcome measures are a bust, and they have to rely on persuasion to interpret symptoms differently in subjective questionnaires to claim efficacy of CBT and GET.

It's a mirage, a con, and they must surely know it.

 

[Turtle]

I think if the theory on which PACE is based were purely a deconditioning theory it would be easy to counter with excellent articles like this one by @ME/CFS Skeptic.


It's a mirage, a con, and they must surely know it.

Do you think CBT can help them (psychiatrists and psychologists) to get rid of their false beliefs? Even if a good portion of GET was added?

 

[ME/CFS Skeptic]

They tried to convince patients, there's no evidence on whether they did or not succeed.

Yes, thanks that would be more accurate. The Powell et al. trial from 2001, however, (the exercise that reported by far the biggest effect size) did report:

Only 15% (11/75) reported that they had believed that their condition was related to physical deconditioning at baseline whereas 81% (61/75) believed this after treatment

I'm not sure which bit of this you are saying is ironic.

That researchers believed that ME/CFS was caused by deconditioning so they set up an exercise trial to cure patients but when they measured VO2 max in the ME/CFS patients who participated in their trial, they were not deconditioned.

MFI scale is 4-20. So 10 is actually a smaller increase than 10 on a 0-20 scale.

Thanks for pointing this out, fixed it.