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

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:

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?

 

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

 

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:

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.

 

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.

 

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.

 

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.

 

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.

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.

 

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.

 

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

 

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

 

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

 

Thanks

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

 

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

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...).

Unfortunately, no text was available at that link.

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.

 

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.