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

I don't think there is clear evidence on this. Was discussed a couple of years ago on S4ME here:
https://www.s4me.info/threads/blood-volume-and-red-blood-cell-volume-in-me-cfs.17305/#post-176681

 

Yes I think the Russian studies were the longest and fatigue was mentioned there but couldn't find those original studies (I suspect they were written in Russian). So that is a caveat.

 

Yes, several people made the same argument on Twitter.

But to be honest I don't really get it. Deconditioning was believed to be the middle step, the mechanism by which symptoms could arise without disease. Some argued that you can't just say to ME patients to exercise more without challenging their illness beliefs because otherwise they would just say that exercise makes them worse, or that they can't exercise because of damaged mitochondria or a persistent infection, etc.

So unhelpful cognitions such as kinesiophobia, somatic attributions, hypervigilance, etc were used to explain why patients kept resting so that they got stuck in a vicious self-perpetuating cycle of deconditioning. But if you take out the deconditioning, how does kinesiophobia and other unhelpful cognitions lead to ME/CFS symptoms? It is a bit unclear to me how this is supposed to work.

 

I remember that in the instruction manual for PACE therapists delivering GET (or was it the CBT arm?), was an explanation for patients that if they exerted themselves, they might get red in the face - as though they hadn't inhabited their human bodies before, and needed that pointing out to them. I can't understand the derangement of mind of those therapists.

 

Helpfully, the Pace trial spells out the central role of deconditioning in their theory of why GET works. It seems pretty clear that if deconditioning doesn't cause the problems, there is nothing to treat, whatever the method.

This is from Panel 1 of the Lancet paper (PDF):

Graded exercise therapy (GET)
GET was done on the basis of deconditioning and exercise
intolerance theories of chronic fatigue syndrome. These
theories assume that the syndrome is perpetuated by
reversible physiological changes of deconditioning and
avoidance of activity. These changes result in the
deconditioning being maintained and an increased
perception of effort, leading to further inactivity. The aim of
treatment was to help the participant gradually return to
appropriate physical activities, reverse the deconditioning,
and thereby reduce fatigue and disability...

If deconditioning doesn't cause the fatigue and disability, the illness model falls over because it can't stand on only one leg.

 

In code form, this is how I usually see that reasoning:

if(false):

// This code somehow still runs​

The premise, the initial necessary condition from which everything derives is false, but they still follow the illogic tree to its conclusion, which is the real starting condition according to them.

And yet almost all professional skeptics can't see anything wrong with that. In fact most of them gush over this like it's the new hot thing. It will probably be the most embarrassing moment in the historial of rational skepticism when this blows over. It's so simple in its deception. It's more blunt than playing with a baby and hiding a ball behind your back like it disappeared.

I think most people understand that. That if they're wrong, they look ridiculous. So it can't be. It just can't, it has to be true. Pffft.

 

For what it is worth, the fear-avoidance model and deconditioning hypothesis that was applied to ME/CFS originated from pain research, mostly low back pain. It has been criticised there too.
The deconditioning paradigm for chronic low back pain unmasked? - PubMed (nih.gov)

The evolution is also pretty similar: somehow they argue that the whole fear avoidance theory is still relevant and that deconditioning simply plays a less important role, while psychological factors are crucial.

 

The FINE trial manual also spells it out quite bluntly, with statements like these:

Together the slipping of the body rhythms, muscle and cardiovascular deconditioning result in the feeling of overwhelming tiredness and other symptoms of CFS.

Symptoms may increase again causing fear of relapse, but remember these are the symptoms of physical deconditioning, nothing else.

They also clearly borrowed some ideas from early chronic pain clinics, including from the behaviouralist approaches that became popular in the 70s and 80s such as those documented in the 1976 book Behavioural Methods for Chronic Pain and Illness and the 1988 book The Psychological Management of Chronic Pain with its similar vicious-circle models and behavioural treatments which continued to break with the old Freudian/post-Freudian style psychosomatic ideas in favour of then-newer ideas based on the gate-control model. If you look at the literature from that period quite a lot of pre-CFS pain psychology work was done at the Maudsley so SW & friends would have been very familiar with it.

Many of their ideas are also to be found in the old neurasthenia literature, such as Proust's The Treatment of Neurasthenia ("... for them more than for all others the rule of progressive increase of work, of slow and methodic training, must be rigorously obeyed", basically GET) and especially the "auto-suggestions" and "vicious circles" of neurasthenia described around the turn of the 20th century, summarised in Hurry's 1915 The Vicious Circles of Neurasthenia and their Treatment, many of which are strikingly similar to the cognitive-behavioural ideas. Even the diagrams are similar in places.

 

Isn't PEM the best argument against the fear-avoidance theory.
If I would have been led by fear I would not fall into the PEM trap.
Even after 33 years of experience I can still get myself into PEM.
You can call it stupid, maybe, but you can't call it fear-avoidance.

 

“Boom and bust” is a common term used by CBT and GET proponents. If you fear something and are avoiding it, it’s odd to do lots of it.

 

I will have a read and a think about where it might be possible to publish as an article (and what might need to be done to do so) - it can be a bit of a slog to get stuff published but that shouldn't be a deterrent as we know there are still so many people who lack basic understanding and knowledge!

 

If I were still doing "boom or bust" after 33 years I might need (some form of) therapy. I'm not that stupid.
And you're right: fear of exercise and taking part in the Olympic Games would rule each other out too.

 

It is typical of their 'logic'... one is supposed to be simultaneously avoidant/phobic & 'doing too much' of a thing so that advice is needed to stop doing so much... of the thing you're afraid of.

Also simultaneously a bored middle aged, middle class woman, and a younger, lazy person from a deprived background.

Also simultaneously a type A personality and someone who needs an excuse to hide from life & who is unable to say no to people.

They are all just stupid ideas that come from a judgemental mind that considers itself far superior, and therefore observes only to reaffirm its own preconceived ideas. Rather than actually, properly looking and listening.

I'd love them to explain how deconditioning theory accounts for my inability to walk more than 4yrds before collapsing last night and yet i managed to walk 10 today... wow that was some pretty impressive reconditioning wasnt it!

 

Excellent read thank you. I shared with family and they really enjoyed.

 

yes, this was exactly the idea.

 

The lead author of FINE described CFS in a talk as similar to really bad jet lag. Really!

 

A lot of Russian space research was translated by NASA; I think some later studies were conducted jointly. Searching for the term "deconditioning", however, may not find it; try looking for studies that mention "hypodynamia", "bed rest" and "hypokinesia" in the volumes that NASA translated - the "Space Biology and Medicine" and "Problems of Space Biology" volumes in particular. I'm not feeling well enough to do a deep-dive into the literature but, from 5 minutes or so searching, here's a couple of starting points:

Vol 13 of "Problems of Space Biology" contains a number of translated Russian studies some of which used prolonged periods of bed rest (a group of 16 healthy subjects, who were strictly confined to bed for 70 days):

"PROBLEMS OF SPACE BIOLOGY, VOL. 13 - Prolonged Limitation of Mobility and Its Influence on the Human Organism"
https://dn790000.ca.archive.org/0/items/nasa_techdoc_19700033535/19700033535.pdf

Also a few references look relevant in these: "Prevention of the Adverse Effect of Hypokinesia on the Human Cardiovascular System" - https://ia600206.us.archive.org/0/items/nasa_techdoc_19670019876/19670019876.pdf - and in "The System of Preventive Measures in Long Space Flights" as well.

Hope that helps ;-) (ETA: fixed links.)

 

Good Blog and thread @ME/CFS Skeptic. I am a bit out of contact at present but this all makes a lot of sense.