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Symptoms of CFS/ME are not determined by activity pacing measured by the chronic pain coping inven..

Discussion in 'Latest ME/CFS Research' started by AndyPR, Aug 29, 2017.

  1. AndyPR

    AndyPR Senior Member

    Not a recommendation.
    Paywalled at http://www.physiotherapyjournal.com/article/S0031-9406(17)30077-9/abstract
    boombachi, Dolphin, Woolie and 2 others like this.
  2. A.B.

    A.B. Senior Member

    This questionnaire has a pacing subscale

    I can't find the relevant questionnaire as given to patients online, but before accepting these findings I would want to make sure that the authors are not misunderstanding what is meant with pacing in the context of ME/CFS. In my view, concepts that define pacing include: a reduction in total activity levels, taking frequent breaks and naps during the day if needed, avoiding the planning of activity, avoiding pushing on despite increasing symptoms. It doesn't mean walking 2 km every day but doing it more slowly if I'm feeling worse - that is prohibited under pacing.

    I can't quite figure out what they did (ability to concentrate is running out as I'm writing this) but it sounds like their data is rendered worthless by very high drop out rates.

    The authors declare no conflict of interest but in my view a physiotherapy service implicitly has a conflict of interest.
    Last edited: Aug 30, 2017
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  3. KME


    Your fears were founded, @A.B. The intervention in this study is described as follows:

    "For patients willing to engage in physical rehabilitation (exercise and
    graded activity) this involved either participating in a symptom management programme (see below)
    or individual physiotherapy, underpinned by cognitive-behavioural principles...
    The symptom management programme was based around the principles of Interactive Behavioural
    Modification Therapy (IBMT), a type of cognitively-informed physiotherapy shown to be effective in
    6 reducing disability in patients with back pain identified as having cognitive barriers to recovery10. As
    part of the intervention participants attended weekly interactive educational sessions over a six week
    period to help them understand factors contributing to symptoms and improve activity levels.
    Participants were facilitated to make links between periods of under- and over-activity and the effects
    this had on symptoms. They were encouraged to engage in functional activities on a consistent basis
    and gradually increase levels over time. They were assisted in this by participating in goal setting
    exercises, which were reviewed on a weekly basis. Problem solving exercises were used to
    overcome barriers to achieving goals. Participants also took part in a graded exercise programme,
    whereby they exercised to an agreed intensity and built this up over time."

    I think it would be hard for a patient to reliably extricate pacing from all the graded activity and exercise that was going on.

    In the discussion they reference a new pacing scale, by the same group of authors, and say
    "Specifically, this APQ-26 theme includes statements such as “I did a
    similar amount of activity on ‘good’ and ‘bad’ days”, in contrast to the CPCI, which assesses
    strategies such as “I focused on going ‘slow and steady’ instead of on my symptoms”. It is therefore
    plausible that some aspects of pacing may be beneficial, whilst others are less helpful. Further work
    13 is warranted to assess whether the facets of pacing suggested by the APQ-26 are related to outcome
    before the utility of pacing can be fully discounted."

    After much searching I think I found the pacing scale in the appendix of a paper on fibromyalgia:

    Pacing scale of Chronic Pain Coping Inventory


    An activity pacing scale for the chronic pain coping inventory: development in a sample of patients with fibromyalgia syndrome

    Warren R. Nielson

    Mark P. Jensen

    Marilyn L. Hill

    Appendix A. Pacing scale items

    Item 7: I was able to do more by just going a little slower

    and giving myself occasional breaks.

    Item 18: I focussed on going `slow and steady' instead of

    on my pain.

    Item 34: I broke up tasks into manageable pieces so I

    could still get a lot done despite pain.

    Item 45: I went `slow and steady' to help distract myself

    from my pain.

    Item 58: I paced my activities by going `slow but steady'.

    Item 67: By going at a reasonable pace (not too fast or

    slow) pain had less effect on what I was doing.
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  4. Sean

    Sean Senior Member

    Just part of the ongoing effort to deliberately conflate pacing and GET.
    Last edited: Aug 29, 2017
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  5. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    This is about doing the same or more at a slower pace. Its not pacing as applied to ME patients by ME patients or appropriately experienced doctors. Its graded exercise light.
    Dolphin, Woolie, Philipp and 9 others like this.
  6. RogerBlack

    RogerBlack Senior Member

    Are they truly reframing all of the limitations of ME/CFS onto pain?
    If pain was my only limitation, I would be ~1% as disabled by ME/CFS.

    I am reminded of the success of IRA fundraising in the USA.

    Claim to represent a whole group, and be wanting to help that whole group, get funding, nomatter what the people on the ground might think.
    AndyPR, Valentijn and Sean like this.
  7. Snow Leopard

    Snow Leopard Hibernating

    South Australia
    Given that they didn't actually measure activity, their conclusions are rather speculative.
    Dolphin, Orla, trishrhymes and 5 others like this.
  8. IreneF

    IreneF Senior Member

    San Francisco
    They are equating back pain with CFS/ME. If you've ever had back pain you know that it hurts to move, but if you can get yourself off the couch you'll do better in the long run. They're assuming that we're not getting better because we refuse to get off the couch.

    Pacing isn't going to fix you and I don't think anyone ever claimed it would. It keeps you on a more or less even keel by staving off crashes (or flares, or whatever you want to call the aching zombie state).
  9. Valentijn

    Valentijn Senior Member

    Full text is at http://dx.doi.org.sci-hub.io/10.1016/j.physio.2017.07.005

    They cite to NICE but describe CFS more like Oxford or Fukuda-lite:
    They don't even claim that patients met a criteria:
    It doesn't sound like patients from the clinic were selected randomly or sequentially, so might be assumed to have been cherry-picked. CBT/GET was given before pacing, so would have weeded out many patients by the time pacing began. Additionally, any bias introduced by therapy or therapists would have been present prior to starting pacing, so may have masked any real improvements - eg, a patient gives a biased response to CBT/GET indicating they improved 10 points, then actually improves 10 points from the later therapy but the bias has worn off, and improvement remains at 10 points.

    I'm not sure how they could conceivably describe this as pacing:
    Apparently the quacks think ME/CFS is pretty much the same thing as Fibromyalgia. And we don't need a "specific" ME/CFS scale to measure disability. Believe it or not, actual general disability scales can be used to measure disability:
    Fatigue was measured with the Chalder Fatigue Scale, of course, because quacks love that stuff :rolleyes: In regards to pacing, 4 of the 6 the questions only tie it into pain, which is likely to confuse most ME/CFS patients. We pace to avoid crashing, not pain.

    As best I can tell, the pseudo-pacing patients were compared to patients who refused any physical rehabilitation. So instead of comparing those allocated to pseudo-pacing against those allocated to CBT/GET, they compared pseudo-pacing to patients who said "no fucking way" to both CBT/GET and pseudo-pacing. Why bother to allocate any patients to CBT/GET instead of pseudo-pacing if the CBT/GET patients aren't used as some sort of control?

    Now the weird stuff. There is no Table 3, and in the results they claim there is an association between pacing and reduced symptoms after all:
    Ahh, they mangled the data to make the correlation disappear:
    They didn't measure disability in ME/CFS patients, and pacing is used to avoid crashes, not pain or fatigue. They used the Fibromyalgia Impact Questionnaire, which specifically instructs patients to "check the box that best indicates how much your fibromyalgia made it difficult to perform each of the following activities during the past 7 days." There's no indication that they replaced "FM" with "CFS" in the instructions, so most CFS patients would not indicate that FM was causing them any such disability :confused::
    This is absolutely not pacing, and not even GET-moderated-by symptoms. It's pure GET:
    That's because ME/CFS has never been about fatigue:
    They conclude that the main problems are catastrophizing and fear-avoidance behavior, hence those probably need to be addressed :rolleyes:

    In summary, these are complete idiots who have no idea what pacing is, and/or they have put a lot of effort into spinning pretty much every aspect of the study. I suspect this was never intended to be a pacing study, but got relabeled as such for the benefit of NICE. The data was collected from 2008-2010, which means they sat on it for one helluva long time. No apparent protocol was published.
  10. Valentijn

    Valentijn Senior Member

    Basically, this paper does not involve pacing as a therapy. It involves pacing as a primarily pain-related outcome measurement on a questionnaire. The therapy was interactive behavioural modification therapy (IBMT), which seems to be a form of CBT, and that is what failed to improve the outcomes: pain-pacing, pain, fatigue, and fibromyalgia-disability.

    Accordingly, both the title and abstract, where pacing is also described is a treatment, are misleading and bordering on academically dishonest.
  11. AndyPandy

    AndyPandy Making the most of it

  12. trishrhymes

    trishrhymes Senior Member

    So we have a study carried out by physiotherapists on patients who might or might no have ME/CFS, using a treatment involving GET with a bit of 'taking things slowly' and calling it pacing.

    So they don't know what ME is, and they've no idea about the existence of PEM and they don't know what ME pacing is.

    What a shambles.
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  13. AndyPandy

    AndyPandy Making the most of it

    This stuff is so pervasive. My dietician (who is a good dietician I think) finished off our latest appointment with unsolicited advice about me increasing exercise, including pool based exercise.

    Also an exercise program with a physiotherapist. Shot that advice down in flames quick smart. She's probably still smouldering.
  14. Dolphin

    Dolphin Senior Member

    The points I was going to make have generally been made.

    One probably small point:

    They subdivide the 11-item Chalder Fatigue Scale (likert scoring) into mental and physical fatigue. Normally this is 4 questions and 7 questions 0-12 and 0-21. They claim they use 0-15 and 0-18. Anyway, with either combination you can't get the baseline averages they got (mental fatigue: 14; physical fatigue: 19).
    trishrhymes likes this.
  15. Dolphin

    Dolphin Senior Member

    This is an interesting point on the PACE Trial, though I wouldn't recommend the pacing measure used in the current study (i.e. Thompson et al.).
    trishrhymes likes this.
  16. Dolphin

    Dolphin Senior Member

    One thing which I am not sure is that clear from the text is that this physiotherapist-led intervention didn't lead to an improvement in pain levels.
    trishrhymes likes this.

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