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"Activity Pacing Self-Management in Chronic Fatigue Syndrome: A Randomized Controlled Trial"

Discussion in 'Latest ME/CFS Research' started by Kyla, Sep 8, 2015.

  1. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    http://ajot.aota.org/article.aspx?articleid=2436574


     
  2. Bob

    Bob

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    Thanks for posting, Kyla. I'll post the citation details here, for reference.

    Kos D, van Eupen I, Meirte J, Van Cauwenbergh D, Moorkens G, Meeus M, Nijs J.
    Activity Pacing Self-Management in Chronic Fatigue Syndrome: A Randomized Controlled Trial.
    Am J Occup Ther 2015;69:6905290020p1-6905290020p11.
    doi: 10.5014/ajot.2015.016287.
     
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  3. Bob

    Bob

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    I'm not certain, but i think this might be the study proposal, which is useful until we have access to the full published paper:
    https://clinicaltrials.gov/ct2/show/NCT01512342

    It describes the nature of the pacing strategy they used:
     
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  4. Effi

    Effi Senior Member

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    These are some of the people responsible for forcing CBT/GET upon us here in Belgium in the past, so I'm feeling cautiously positive about this study. It sounds ok I think, almost as if they're turning into a different direction. Let's hope so. But I'm not totally convinced yet. :)
     
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  5. Bob

    Bob

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    From our experience in the UK, I would advise taking a stance of cautious pessimism, until you see firm evidence that they have changed! Otherwise you'll just be disappointed.

    But it would be nice to think that they are hedging their bets, and exploring different options.

    It could be a useful study to cite because there's so little research into pacing. But we can't really judge it without the full paper.
     
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  6. Effi

    Effi Senior Member

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    I totally agree @Bob ! I was just trying to be a bit more positive for a change, when there is a tiny glimmer of hope coming from this crew. But really I am very cautious and I don't trust them one bit. :cautious:

    Btw, studying pacing seems utterly useless to me. We've all become professionals at pacing, we know how it works, and that it works. Any new patients will get the hang of it quickly, as long as they listen to their body's signals (and not ignore them like these people have been telling us for decades). Such a shame to see so much money being poured into useless drivel research...
     
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  7. Bob

    Bob

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    Yes, it would be nice to believe that they were changing their ways. I like to look for the positives as well, but their colleagues in the UK are beyond hope.
     
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  8. Bob

    Bob

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    I agree, but if it enables/encourages them to promote pacing rather than CBT/GET them that would be a useful outcome.
     
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  9. Effi

    Effi Senior Member

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    That is actually what worries me tbh... What they describe doesn't sound that different from the usual CBT/GET approach. They call it pacing, but is it really? I am not at all sure of that.
    This is exactly what they've been telling us to do for years here: 20 minutes of activity followed by 20 minutes of rest. Or if that is too much, 15 + 15. Worst case scenario 10+10. But no less, cause that would just be you being lazy. And then gradually increase each block of time. Aaaaand we're back at GET. Btw, this is something they copy/pasted from a therapy method for patients suffering depression (without me/cfs) (read this somewhere long time ago but can't remember where). You catch my drift?

    What I worry about is also this part:
    This sounds like the same old patronizing viewpoint as usual: let patients estimate, but then WE will set the RIGHT amount of minutes (and then we'll push them through it). Pacing is not about someone else setting time blocks for you. It's about patients learning to feel when they need to stop. This is different every day. There can be days with 0 minutes of activity. And then days where you can keep going a bit longer than expected. We all know all too well that rest time NEVER equals activity time. It is a ludicrous suggestion. Pre-setting time is just the same old recipe for disaster.

    It just all sounds way too much like GET repackaged. One of the people who is writing this is actually putting this into practice already over here, so it's not just me being suspicious. 'We're not doing GET anymore', but then they tell patients they have to do 'gentle movement, slowly increased, ...'. It's very sneaky what they're doing. This is the second or third of these kind of sneaky studies this year, all from the same people. I'm not buying it. But I'm afraid the government will. History repeating. *sigh* :depressed:
     
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  10. Bob

    Bob

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    @Effi, yes, that all sounds bad. I thought their description of pacing sounded a bit dodgy, but I was going to reserve judgment until I'd read more. It's a bit like some therapists in the UK referring to GET as "pacing up" which really confuses patients. I've seen people saying that they hate pacing, which I couldn't understand, and when I dug deeper and asked them what they were talking about, it seems that they'd been exposed to a therapist who had been teaching "pacing up". So the patient had turned against pacing and probably wouldn't want to learn about proper pacing after that experience. It's a very sinister manipulation of patients and their expectations.
     
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  11. Effi

    Effi Senior Member

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    Why they feel the need to keep pushing sick people deeper and deeper into a downward spiral is beyond me. I just don't understand. 'Pacing up' is probably one of the most ridiculous tactical wordings I've ever seen in this context... Why don't they just give up on us already? They'll never ever win this. Admitting you are wrong is a sign of strength in my book. But not in theirs, apparently. Over our dead bodies, am I right? :ill:
     
    Last edited: Sep 8, 2015
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  12. Snowdrop

    Snowdrop Rebel without a biscuit

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    It is quite sinister. Since it has become harder to openly support the psychosomatic aetiology drivel I've noticed over the space of the last few years how they have been steadily and stealthily co-opting the language of patients and twisting the meaning. THEY are at war with sick vulnerable people using manipulation and stealth propaganda and then (ab)using their power to suggest that patients are hurting their own community by crying foul.
    I wish this knowledge were more public.
    I will say it again, for all their work in the field they really have no idea what it is like to have ME.
     
    Last edited: Sep 8, 2015
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  13. alkt

    alkt Senior Member

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    from everything i have managed to read about the psychiatric treatment of m.e i think i have been lucky that until recently my health treatment has been mostly palliative . unfortunately i recently asked my doctor for an appointment with a neurologist due to worsening of aphasia .and he referred me to a c f s clinic .i checked what they were doing at the clinic. you can guess/ yes cbt get and sleep hygiene . needless to say cancelled the appointment as i do not want to waste my gps budget or put money into any psych based treatment of m.e .
     
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  14. Bob

    Bob

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    There has been one move in the right direction; GET has become more like pacing, and more collaborative than the earlier types of GET, which I think is why there wasn't outright carnage in the PACE trial. The therapists were instructed to set baselines according to symptoms and then to monitor symptoms throughout the trial, whereas in the early days symptoms were completely ignored. It's not exactly something to jump up and down about but at least it's less likely to harm people.
     
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  15. Sean

    Sean Senior Member

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    Once again, it is presented as the patient being ignorant, even deluded, and in need of professional guidance by so called knowledgeable experts. Kinda ironic that it is referred to as pacing self-management.

    Ha ha ha. :meh:

    Patients are perfectly capable of figuring out practical pacing for themselves. We don't need detailed therapeutic instruction, the real purpose of which is to delude the therapist into believing they are relevant, and to maintain their authority and paypacket.

    What a crock. This whole paradigm needs to be strangled and left to rot on the side of the road.
     
    Last edited: Sep 9, 2015
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  16. Sean

    Sean Senior Member

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    There is a whole critical paper to be written on how the definitions, features, and language around their claims on GET/Pacing has changed over the last 25 years or so.
     
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  17. SOC

    SOC

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    I find it very disturbing the way the BPS school snags legitimate words we use in ME, redefines them to serve their own ends, and thereby confuses the valuable information that we do have available to us. Some redefined words that come to mind: ME (which they "changed" from a neurological disease defined by Ramsay to a psychiatric illness defined by the Oxford definition), pacing (reducing activity to a level that doesn't cause excessive symptoms ----> GET), recovery (improved to normal functioning ----> something ill-defined that no one would recognize as recovered).

    This is some very sinister form of manipulation of both patients and the public. I'd go so far as to say it is sick.

    ETA: It's like they're trying to cripple our ability to talk constructively among ourselves and to the public. We knew the difference between ME and chronic fatigue and could talk about one or the other. They've conflated the two and now we have no clean word for our illness anymore.

    We used to be able to encourage each other to pace. Now when we talk about pacing, people think we are talking about some form of GET. Now we don't have a clear word for that particular useful management technique.

    As for "recovery"... :rolleyes:
     
    Last edited: Sep 9, 2015
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  18. Sean

    Sean Senior Member

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    That is precisely what they are trying to do. Muddy the waters as much as possible.

    It is a pure propaganda exercise, as is the accusations that patients are the ones running the propaganda.

    Propaganda 101: Accuse your enemies of the very things you are guilty of.
     
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  19. lansbergen

    lansbergen Senior Member

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    They are very good at that.
     
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  20. Valentijn

    Valentijn The Diabolic Logic

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    Yes, it's bad English, but normal Dutch :p "Learn" and "teach" both use the same verb, and it's one which even expert English speakers will carry over from Dutch. They do exactly the same thing with "borrow" and "lend" and it drives me batty :D

    Though interestingly, "I was learned" or "he learned him good" is used informally in American English, especially in the rural South.
     
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