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

[ME/CFS Skeptic]

To be devil's advocate for a moment

Thanks, I think this is useful to try to understand their reasoning. I've tried but I have a hard time understanding how it could work without the deconditioning part.

For example:

I think the idea would be that experiencing the pain of exercising when relatively deconditioned contributes to the person to misinterpreting all sorts of normal, minor symptoms as being part of their illness.

So the person misinterprets minor symptoms as being part of an organic illness, does not stop resting, is perhaps fearful that he/she is really sick or damaged. But how do the disabling symptoms of ME/CFS come about?

 

[JemPD]

But how do the disabling symptoms of ME/CFS come about?

theyre disabling merely because the person believes they are (nocebo effect), and then they rest more & more, leading to more & more discomfort when trying to move again. Also many somatic symptoms of anxiety

 

[Trish]

But how do the disabling symptoms of ME/CFS come about?

I think the BPS idea is that we aren't really as disabled as we think we are, that we are misinterpreting signals from our bodies.

I don't think they have any idea just how sick we are. I suspect most of them have never visited a person with severe ME at home and spent time observing and listening to them. They focus on the mildest cases who they see for probably a total of an hour or two before they are discharged from their clinic and don't follow them up. They conflate ME/CFS with chronic fatigue and imagine it's no different from their own fatigue after a busy week. I think it's really striking reading apologies from doctors with Long Covid saying they had never understood what ME/CFS is like until they experienced it.

 

[ME/CFS Skeptic]

Vol 13 of "Problems of Space Biology" contains a number of translated Russian studies that used prolonged periods of bed rest:
"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

Thanks, that's an interesting one where fatigue is mentioned a couple of times.

One article (on page 144 in the PDF) is on 16 healthy individuals who were strictly confined to bed for 70 days. They write:

Mental and physical exertion continued to tire him quickly over the next 10 days. Reading fatigued him. He complained of weakness in his arms and legs, general debility and physical fatigue ("I can't even breathe as deeply as I could before").

But this was only about one of the 16 participants. "The other subjects "also showed signs of a certain asthenia" with sleep problems.

Fatigue is also mentioned in a paper on page 237 of the PDF, where patients also endured a 70 days of hypodynamia.

The general condition of the subjects was satisfactory. All complained of general fatigue

 

[dave30th]

(I suspect they were written in Russian)

If you found them, I could read them.

 

[ME/CFS Skeptic]

If you found them, I could read them

Sorry did not find the actual Russian reports, only saw them mentioned in US articles and reviews.

 

[Sean]

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 have real trouble believing the researchers actually believe this is a practical meaningful result.

Frankly, all it proves is that gaslighting and bullying by authority figures works. Which is neither new nor helpful knowledge.

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

Yes, I have trouble seeing how the model works without deconditioning. The proponents of the psycho-behavioural model clearly think it is critical to the model, given how prominent it is in their expositions of 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.

There is nothing new under the psychobabbling sun.

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.

Their pronouncements about our alleged mental state tells us far more about their actual mental state than anything.

theyre disabling merely because the person believes they are (nocebo effect),

Which is basically an unfalsifiable claim. It can never be wrong.

 

[Sid]

how do the disabling symptoms of ME/CFS come about?

Fear avoidance. The ME/CFS person knows that if they engage in activity, they’ll get muscle aches, huffing and puffing and red in the face. They are so freaked out by these normal responses to activity that they avoid all activity.

 

[ME/CFS Skeptic]

They are so freaked out by these normal responses to activity that they avoid all activity.

Ok so they avoid activity but how does the suffering start, the extreme fatigue, widespread pain, and other symptoms?

Avoiding things would probably look like an extreme anxiety disorder where people live reclusive.

 

[Sid]

Ok so they avoid activity but how does the suffering start, the extreme fatigue, widespread pain, and other symptoms?

There is no extreme fatigue, widespread pain or any other symptom. It's all just misperceptions of normal bodily sensations that everyone gets. The symptoms aren't real.

Avoiding things would probably look like an extreme anxiety disorder where people live reclusive.

People with moderate and severe ME/CFS mostly live inside their homes. Some leave the house only to go to medical appointments. This can easily be misinterpreted as agoraphobia by BPS practitioners.

 

[tuha]

Here I also would ask the question. Are the patients who are deconditioned able to do 2 - 3 times more activities from one day to another day?
I have ME/CFS for more than 20 years and I saw a lot of the same stories. Many patients didn´t know what´s wrong with them so they pushed themself throught the limits for years till they got much worse and it was not possible anymore to go throught the limits. It was also my case, first 8 years of ME/CFS I was able to walk 20 km, but I always felt terribly exhausted after with all the other strange ME/CFS symptoms after too much activities . Then suddenly after big crash I was able to walk 10 minutes in the morning and 10 minutes in the evening, the other time I just laid in bed. After 2 years when my health and daily activity was pretty the same, from one day to another I just woke up and I suddenly felt better and I could do 40 minutes walk without a problem.
I didnt do any GET therapy, just from one day to another I could significantly increase the level of my daily activity. My explanation is that somehow I stabilised my health because I avoided big exhaustions especially during more consecutive days. And there were more sudden "recoveries" like this in my case. Today I can have a walk for 2 hours without a problem if I paced good the days before.

Also one more strange "recovery" story in my case. After 5 years of this illness I was going to make a hiking week with my girlfried. After the first 2 - 3 days I felt terribly, she was very happy and I didnt know how to tell here that I cannot anymore, I thought that I am going to die if I will do one more hiking day and the next day she wanted to do 60 kilometers biking trip. I felt terribly in the night but then I woke up and it was miracle I felt really good. I did the biking trip without a problem and for the next 6 months I felt almost healthy. Then I got drunk one night I throw up and had stomach problems for 1 months and my ME/CFS was back. I am thinking if I wasnt stupid that night and wouldnt get drunk, maybe I could stay recovered, I was too young.

So would the ME/CFS be the question of deconditioning if there are such a recoveries where the patients can suddenly do much more? It´s strange after more than 20 years with ME/CFS I still feel that my body is strong and I am sure if I would get healthy, in 1 week I would be able to run 5 kilometers.

 

[ME/CFS Skeptic]

The symptoms aren't real.

Yes, that is probably what it comes down to. Yet they keep saying that the symptoms are real.

 

[Trish]

Yes, that is probably what it comes down to. Yet they keep saying that the symptoms are real.

Given that symptoms are what a person experiences and reports, they can say the symptoms are real, but at the same time say the experience is an exaggeration of normal healthy aches and tiredness due to distorted perception of normal sensations as abnormal, and we report effort as abnormal due to distorted effort perception.

And that these distortions don't have an organic basis, ie they are psychosomatic. So they can say with a straight face, 'your pain is very real' (note the use of the word 'very') to convey how earnestly they believe us, while also saying privately to themselves that we are deluded.

At least I assume that's what's happening. Hard to imagine how they can be so deluded.

 

[PhysiosforME]

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.

Have just read this - thank you for sharing, really interesting from a physio perspective. I've tweeted to reshare your post https://twitter.com/user/status/1824745905913843899

 

[PhysiosforME]

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

@ME/CFS Skeptic would it be OK to send you a personal message about this please?

 

[ME/CFS Skeptic]

Have just read this - thank you for sharing, really interesting from a physio perspective. I've tweeted to reshare your post

Thanks

@ME/CFS Skeptic would it be OK to send you a personal message about this please?

Yes sure, although I personally don't have any plans to publish this as a paper myself.

 

[Simon M]

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 Pace authors can't do that: they nailed their colours to the deconditioning-causes-symptoms mast.

The FINE trial manual also spells it out quite bluntly, with statements like these:
...Symptoms may increase again causing fear of relapse, but remember these are the symptoms of physical deconditioning, nothing else

Likewise Fine trial authors.

And thanks for the info about the history.

I believe the big Edwards big-effect GET trial came directly from the Liverpool pain management approach. Miller is part of that too, I believe (but my memory is flaky...).

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)

Unfortunately, no text was available at that link.

To be devil's advocate for a moment: Perhaps the BPS view does not require deconditioning to a level that is worse than healthy sedentary people? Perhaps it just requires a relative loss of fitness?

The Fine and Pace trials explicitly require deconditioning to cause the symptoms and disability as the rationale for GET. CBT can get by on overinterpretation of minor fluctuations alone.

Curiously, I haven't heard any Pace authors talk about GET for some time, it's all CBT now. But BPS includes (or included) both GET and CBT.

Thanks, @Nightsong for the history.

I was a member of a chronic pain organisation in the late 90s when CBT for pain was big and being hyped: there were quite a few letters suggesting those with chronic pain were equally unimpressed by the effectiveness and logic of that approach.

 

[Trish]

Curiously, I haven't heard any Pace authors talk about GET for some time, it's all CBT now. But BPS includes (or included) both GET and CBT.

The Anomalies paper published in 2023 by White et al, and clearly led by White who was the leader on GET in PACE, tries to argue against NICE's removal of GET.
https://www.s4me.info/threads/anoma...-guideline-for-cfs-me-2023-white-et-al.34097/

I think the other PACE leading authors, Sharpe and Chalder were always on the CBT wing of PACE, it was White who led on GET, including co-authoring the manuals. He clearly hasn't given up.

 

[Hutan]

The Fine and Pace trials explicitly require deconditioning to cause the symptoms and disability as the rationale for GET. CBT can get by on overinterpretation of minor fluctuations alone.

Of course, there's not one single coherent story that is the 'BPS mechanism'. I expect there are some BPS people who have suggested that deconditioning is the cause of symptoms and if you fix the deconditioning, you fix the CFS. I think that idea, much like the idea of causal childhood trauma, has mostly been abandoned when supporting evidence can't be found. And some BPS people probably say different things on different days to different audiences and may not, even in the privacy of their own minds, have a stable and fixed idea about what they are arguing.

The FINE trial manual also spells it out quite bluntly, with statements like these:
...Symptoms may increase again causing fear of relapse, but remember these are the symptoms of physical deconditioning, nothing else

I don't think that that quote proves that senior BPS people necessarily believed that physical deconditioning was the cause of debilitating symptoms. It just proves that the BPS people were giving people with ME/CFS the message to not be worried by any symptom increase as it isn't due to a physical disease.

I do think we can and should argue that many people with ME/CFS are not extremely deconditioned, and that the idea that ME/CFS is just a lack of fitness is ridiculous. I just don't think that it is enough to head off BPS ideas.

I think the idea put about most often is that an infectious illness and the resulting (often slight) deconditioning (relative to the person's previous fitness) and post-convalescence fatigue are triggers, causing an increased number of aches and pains and other negative sensations as the person attempts to resume normal life. That somehow results (perhaps by social contagion) in the person developing a faulty interpretation or amplification of common body sensations. With that model, deconditioning doesn't necessarily cause ongoing ME/CFS symptoms and GET can be seen more as a means to overcoming the false illness belief and fears of resuming normal life and activity levels than increasing fitness.

Under that BPS model, every normal ache and pain is supposedly interpreted as evidence of a serious illness. The dizziness that everyone can get when standing up too quickly (especially during an infection) is interpreted as an orthostatic intolerance syndrome. And then, we settle into the sick role and develop bad habits. The BPS interventions supposedly provide us a way to get back to health without losing face.

 

[rvallee]

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.

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.

But how do the disabling symptoms of ME/CFS come about?

Deconditioning, of course.

It is commonly argued, but the symptoms are always, always, explained as the result of deconditioning. Which is just as false. I've seen this applied systematically in Long Covid. It's either deconditioning or anxiety that is the cause of all the symptoms, and usually where anxiety is concerned it's all because of deconditioning, based on the absurd idea that we just interpret feeling the consequences of that deconditioning, fatigue and so on, as signs of physical harm, or whatever.

I don't think anyone in history has ever managed to more perfectly capture the eating their cake and having it too.