Surely an astronaut returning from a long time in space, once back on earth would be fundamentally healthy but needing to recondition?
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Science Media Centre expert reaction to Journal of Health Psychology’s Special Issue on The PACE Tri
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Invisible Woman
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I see where you're coming from @Barry53 and agree. If you are bedbound for any period of time you will become deconditioned. The root cause being whatever made you bedbound and that must be dealt with first.
However,. I believe the deconditioning argument is just a typical tactic on the part of BPSers. Take a grain truth (as above) and then bend it & twist it until you have the excuse you want to deprive vulnerable and ill people of the support they need while earning money from studies that prove nothing (except that they have no idea how to run a study).
We know it's not just deconditioning and they know it too. Until bodies like NICE and NHS England stop allowing themselves to be spoonfed by the in-crowd and actually do the job the public remunerates them well for we just go round and round.
However,. I believe the deconditioning argument is just a typical tactic on the part of BPSers. Take a grain truth (as above) and then bend it & twist it until you have the excuse you want to deprive vulnerable and ill people of the support they need while earning money from studies that prove nothing (except that they have no idea how to run a study).
We know it's not just deconditioning and they know it too. Until bodies like NICE and NHS England stop allowing themselves to be spoonfed by the in-crowd and actually do the job the public remunerates them well for we just go round and round.
I agree with you 100% @Invisible Woman. I was trying to home in on the fact that a distinguishing physical differentiator for someone with severe ME, is that their bodies simply cannot - physically - recondition. And the BPS brigade completely (and maybe deliberately) misrepresent and misinterpret this as a mental inability.
MeSci
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Not really - they have quite a lot of health problems: https://en.wikipedia.org/wiki/Effect_of_spaceflight_on_the_human_body
Jonathan Edwards
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Yes, deconditioning severe enough that someone cannot walk is rare in healthy people but it does occur. Certain types of medical treatment require immobilisation and when finished the person may be effectively completely healthy but not have walked for a period of weeks. Prisoners of war became deconditioned. A number were also malnourished but once fed the only problem may have been deconditioning. But most people are deconditioned because they are seriously ill, not the other way around!
Jonathan Edwards
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I think arguably all those come under deconditioning. Not just muscle weakness but also bone loss, water redistribution etc.
Just realised I need to clarify further. I am not for a moment suggesting that a bed bound ME patient is bed bound because they are deconditioned! That would be a circular and silly assertion. I was more suggesting that their ME is what holds them bed bound, and that therefore as an additional complication, there will also be consequential deconditioning.
BurnA
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How do mild patients fit into the deconditioned model?
Wonko
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They need more practice obviously
alex3619
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As a mild patient I used to go for long walks, and do weight and other training. Deconditioning does not fit my experience at all. I got deconditioned to some degree when I became highly sedentary, sitting or lying nearly all day. That was as a result of my health going from low moderate to high moderate in severity.
Every time I tried running, no matter how careful and slow (very much a GET progression), my health crashed, though typically after a small delay of one to two weeks, and even longer when I was very mild in severity.
As far as energy is concerned, I am currently in a small improvement period. I automatically do more, and I think most patients experience this. Even with some mild deconditioning it does not stop me doing things if my energy allows it. The psychological claims made by CBT/GET proponents just don't fit with my experience or that of many patients I have talked to.
My wife is mild-to-moderate, so I can only comment on the basis of that. I have no medical expertise.
I rather think the answer to your question is: Not much, if anything, at all. Although my wife is limited in what she can do, she is able (and determined) to do more than enough I think to stave off any significant deconditioning. In fact because she strives hard within her limits, I would guess your average couch potato is considerably more deconditioned than my wife.
So taking two extremes (which is often a good way to come at a problem), and assuming that someone with mild ME probably has no deconditioning, and severe ME inevitably does have consequential and supplementary deconditioning, there must be some sort of relationship between ME severity and deconditioning. I imagine that if you were to draw a graph of ME severity along one axis, and consequential deconditioning along the other axis, the line would look very non-linear (just a hunch on my part). I suspect it would start off low and stay low a good way through the ME severity axis, and then start to curve up evermore sharply towards the severe and very severe end.
And I have to emphasise again, any deconditioning I'm talking about, is as a consequence of (probably severe) ME.
I wonder if any research has ever been done on this at all. Could you advise at all @Keith Geraghty?
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NelliePledge
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theyve convinced themselves that we re depressed therefore unmotivated and choosing to be inactive therefore we must be de conditioned. It's all just assumptions. i was definitely inactive when I was depressed and it did affect my weight and physical fitness. I'm not depressed now and I've got mild ME. Within my energy limits I consider myself pretty active I've been gradually doing some major decluttering in my house that was on hold when I was depressed. I can sort through stuff and move boxes short distances not too restricted in that compared to before maybe 80/90% as strong. But I can't walk anything like as far as my depressed inactive self could. At a rough estimate probably 20% or less before I start to struggle for energy/strength. When I was depressed I wasn't even registering that I was so inactive. Now I'm very aware that I need to spend much of my time sitting or lying down and naturally I tend to do a few minutes chores so I'm active every hour. The time when I spend most time sitting without moving is when I work on my 3 working afternoons.
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trishrhymes
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With the same lack of logic as the rest of their nonsense.
I was going to say they live in an Alice in Wonderland world of logic, but that would be a gross insult to Lewis Carroll, who when he wasn't writing Alice was a logician.
I suppose the point is that any relationship between ME severity and consequential deconditioning, is going to be no different than the relationship between any other severity-variable disease and consequential deconditioning. But I imagine proving that relationship is tricky. If you could, then you could maybe demonstrate that people in the non-severe part of the spectrum are not deconditioned - the very ME patients the BPS brigade focus on.
Are there any comparison studies that could be run between ME patients and some other severity-variable disease, where the relationship between that disease and its consequential deconditioning is well understood? And then maybe demonstrate that in that regard the relationship is similar for ME? From there then show that deconditioning is only applicable to severely affected ME patients (because of how severe ME prevents physical activity), and thereby not the people PACE trialled.
Are there any comparison studies that could be run between ME patients and some other severity-variable disease, where the relationship between that disease and its consequential deconditioning is well understood? And then maybe demonstrate that in that regard the relationship is similar for ME? From there then show that deconditioning is only applicable to severely affected ME patients (because of how severe ME prevents physical activity), and thereby not the people PACE trialled.
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slysaint
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For all their questionnaires the bPS researchers seem to have a very poor grasp of the ongoing symptoms that they try to box into more 'understandable' definitions. Although I have now 'got used to them', at the beginning, what I used to call 'weird' symptoms were just that. I could try and liken them to x,y,z to try and explain but in reality they were unlike anything I had experienced before.
snowathlete
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If ME is due to de-conditioning, then how come many patients go from being fit, active, conditioned, to un-conditioned in a very short period of time, even in a single day with sudden onset? Sudden onset makes the idea of de-conditioning causing ME a complete non-starter.
dangermouse
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Exactly.
I've reconditioned in the past after food poisoning (really bad) and infection with Krypto Sporidium (in our water supply). Both times I'd been very unwell and during the former I was bedbound for a few days, then very weak.
After both episodes I returned to full time work and my leisure activities.
ME is different. Very different. It demands respect. You don't get to recondition yourself better with this illness, it just doesn't let that happen.
Exactly my experience!
When I feel good, I have to hold myself back form doing too much, because it comes naturally to just start doing stuff when you feel good. The whole theory of kinesiophobia therefore sounds absolutely ridiculous.
Even after being "punished" by PEM for so many years now, I still feel like going for a run sometimes. For me, that feeling of wanting to move, seems to come so innately, it's so strong in your blueprint, that you can't "unlearn" it. Even though I get punished for it with a lot of pain every time..
Luckily I just had a remisson for about half a year and I did everything I could. I didn't have to train or build up anything, it was just suddenly back and I could do everything normal again. So even all the skeptics around me, now absolutely believe that something is wrong. Unfortunatly, I'm back at moderate again now
I remember when I was still pretty mild affected and I was still seeing my GP. I told her of my problems. At that times I was sleeping for 12-14 hours a day, couldn't do any sport anymore. But I still worked 3 half days a week in a very active job and then I rested every other day. She said that lying in bed for that much time was getting me to be deconditioned.. I told her that was absolute nonsense, because I was doing more workout in those three mornings than she was probably doing in five days sitting in her office
Not sure if you are talking to me @snowathlete, but if you are then you have completely misunderstood what I am saying ... completely.