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

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:

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

 

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.

 

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.

 

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

 

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

 

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?

shouldnt that be 'first major exercise trial' ??

 

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.

 

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.

 

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.

 

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.

 

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.

 

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.

 

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.

 

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?

 

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:

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.

Thanks for pointing this out, fixed it.