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Leonard Jason study - Changes in Activity & Perceived/Available Energy

Discussion in 'Latest ME/CFS Research' started by CBS, Oct 27, 2010.

  1. CBS

    CBS Senior Member

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    The Role of Changes in Activity as a Function of Perceived Available and
    Expended Energy in Nonpharmacological Treatment Outcomes for ME/CFS


    Molly Brown, Neha Khorana, and Leonard A. Jason
    DePaul University

    J Clin Psychol 00:18, 2010


    My apologies for not being able to write much of a review. I've been trying all day to get through this and have simply been in too much of a fog. I'm afraid that the The best I can do at the moment is to bring this to the forum's attention.

    Basically, the study finds that staying within your "energy envelope," as defined by the patient, leads to relatively lower levels of fatigue.
     
  2. Snow Leopard

    Snow Leopard Senior Member

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    What he is trying to say is the mild increases in activity in GET and CBT studies might have everything to do with self efficacy and little to do with actual improvement in the illness. ;)
     
  3. xrayspex

    xrayspex Senior Member

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    thanks you guys and snow leopard really glad to have you spell that out, very helpful
     
  4. alex3619

    alex3619 Senior Member

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    Hi,

    My take on this, based on the first post, is that GET works if it is strictly within your energy envelope - but that means that only moderate or mild CFS patients need ever think about it. It stress my energy envelope to just make breakfast, so most days it is delayed or skipped - and that is just one issue. So exercise is only applicable for a subset of patients, and then in only a limited way.

    Bye
    Alex
     
  5. CBS

    CBS Senior Member

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    Hi Alex,

    My take is similar to yours. The patient needs to be instructed on how to identify their "energy envelope" and not to exceed it. Bottom line, is that ultimately, the patient has to be in control of the amount of activity they undertake.

    I suspect that for most of us that means reducing activity, not increasing it.

    For years, I suspect for myself that would have meant brief periods of stretching and short walks. My limits have changed dramatically over time. Now, like you, I've often exceeded my energy envelope by the time I've finished breakfast.

    I'll try to post a more though summary sometime today or tomorrow.
     
  6. Dolphin

    Dolphin Senior Member

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    "works" is a strong word: in the world of most of those who promote GET and CBT based on GET for CFS, there is no ceiling of activity, so "working" means getting somebody back to full functioning. As was claimed in the NHS Plus Guidelines (for occupational physicians, employers, etc) GET and CBT based on GET has been shown to restore the ability to work; in fact, the evidence shows nothing of the sort but the people who make such statements (not Lenny Jason) can fool most of the people, most of the time [they (not this study - haven't got it to read) used questionnaires, didn't show any actual increase in activity, you most likely had lots of CFS patients saying they could do quite a lot - but they weren't working at the same time so one doesn't know how they would be on the questionnaires if they were working 40h weeks and then describing how they werez]. Trials are usually relatively short lived so one often doesn't see what happens to people when they reach their ceiling of activity: for a lot of the trial, they can simply be substituting the exercise for other activity.
     
  7. alex3619

    alex3619 Senior Member

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    Hi Dolphin,

    Actually I agree with you: we are using different definitions of "works". In the way I used it, it "works" if it produces any improvement in functionality. It is also clear that:

    1. This was an interpretation of this one study.
    2. The improvement is only modest - it has to be within the energy envelope. For very mild CFS patients, this envelope might permit part- or full-time work, but most of these patients would be so mild as to be indistinguishable from, say, mild depression. This means that all data is suspect.
    3. This use of GET is totally different from that used in the UK, and is more in line with GET followed by pacing as you approach your limits, because these limits are physiologically set.
    4. The psychobabble cultists use the term CFS against us by changing its meaning all the time. They have done the same for GET and CBT. Neither are what they should be the way they use them, and most doctors don't get that - nor the public or media.

    Bye
    Alex
     
  8. Sean

    Sean Senior Member

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    I wish researchers and clinicians would not mix up GET and pacing. They are fundamentally different approaches.
     
  9. Dolphin

    Dolphin Senior Member

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    I believe some may be able to increase exercise levels within one's energy envelope if mildly affected. How much actual functional improvement this leads to in terms of hours able to work isn't clear. People can then be reluctant to give up the exercise program.

    If I know the basis of this current study, physical functioning is defined by a questionnaire. It would have been interesting to see the change in hours worked (or even activity levels). Previous studies I've seen haven't tended to show big increases particularly for hours worked. People should be wary of claims of improvements in "physical functioning" in CFS research - it sounds impressive but is usually the SF-36 physical functioning subscale. As Wiborg highlighted, the Dutch studies where people had reduced fatigue compared to the control group, found no difference in actual activitiy levels between the group; some of the same studies found the same for the physical functioning subscale (people were reporting better physical functioning than the control group but weren't actually doing anymore). Friedberg also found this in a 2009 study. Friedberg's study found that people actually had a slight decrease in total activity; when you factor in that people were going for longer walks, this means that they must have had to make overall cuts in the other activities they were doing (despite reporting improvements in physical functioning and fatigue levels).

    It remains to be clear if using energy for exercise rather than activity leads to a total increase in actitivies. People might be better staying within their envelope and if it allows them do more, do more. But don't necessarily "waste" energy on exercise.
     
  10. Sean

    Sean Senior Member

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    Very important point.
     
  11. oceanblue

    oceanblue Senior Member

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    Actigraphs vs SF-36 Physical Functioning

    I'm left a little confused by this study and what it means.

    The one clear finding is that, 12 months on, people who were within their energy envelope at baseline did better than those that weren't, where better means less fatigue and more SF-36 physical functioning.

    However, these results say nothing about GET as a specific therapy since it wasn't measured; the results are pooled for all 4 approaches used in the master study: CBT with graded exercise (which is what most UK CBT is); anaerobic activity; cognitive coping skills, and relaxation.

    Things get more complicated when actigraphy results are included. There were 114 participants in Lenny's master study of non-pharma treatments and results for this study are based on the 44 (39%) of patients with complete actigraphy data for both baseline and 12 month follow-up.

    And while 7/17 (41%) of those within their envelope at baseline increased activity levels 12 months on, 16/27 (59%) of those outside their envelope improved activity levels. Yet this latter group showed no increase in physical functioning scored by SF36 PF subscale.

    If I've udnerstood the data correctly, those inside their envelope at baseline did NOT show increased activity over 12 months compared with those outside their envelope at baseline

    The paper highlights the use of actigraphs as an objective measure of activity but I'm concerned by the lack of correlation between SF36 PF seen in table 1. The only group where PF and actigraphy move together is those Inside envelope at baseline who Increased actigraphy - and there are only 7 of them.

    I'm all for an objective rather than a subjective measure of activity but I'd be interested to know what validation has been done of both actigraphy and SF36 PF vs real energy used (eg by videoing people?). Actigraphs only measure acceleration at the waist (or wherever attached) and make no measure of load, so me bending down to fetch a plate from a cupboard presumably gives similar data to bending down to lift a heavy stone in the garden. SF36 is subject to unreliable memory covering the last 4 weeks, as well as recall bias, perhaps due to an unrealistically positive view of things.

    Overall, this study seems to give one result looking at SF36 PF and fatigue scale data, and a different one looking at actigraphy data. Which is right? Or have I misunderstood the study?

    I guess this also adds weight to including data on other real-world measures eg work status (and how the hell did the NHS plus guidelines manage to claim GET gets people back to work? I thought BACME were overseeing NHS training in this area and they do like to stress the importance of 'evidence-based medicine', whatever that phrase is interpreted to mean)
     
  12. Dolphin

    Dolphin Senior Member

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    I haven't got the study to read so probably shouldn't comment too much.

    Here's the SF-36 Physical Functioning Subscale:

    For the 0-100 scores, one scores 5 for each one where one says "Yes, limited a little" and 10 for each one where one says "No, not limited at all".
     
  13. Snow Leopard

    Snow Leopard Senior Member

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    The article is in the Library. Those in their energy envelope who decrease their activity levels also had a decrease in fatigue severity and increase in physical functioning scores as measured by the questionnaire.
    It seems SF-36 isn't completely correlated with actigraph measurements, I believe the data Bleijenberg et al. suggests this also (from memory).
     
  14. oceanblue

    oceanblue Senior Member

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    Thanks. I'm still mystified that 17 people could record an increase of 15+ points on this scale and at the same time show a decrease in actigraphy levels (inside envelope/decrease in actigraphy). Something doesn't add up., especially given another 7 people scored a similar increase yet increased thier actigraphy.
     
  15. Dolphin

    Dolphin Senior Member

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    In this study:

    an average increase of 9 on the SF-36 PF scale was recorded (49.44 to 58.18) even though there was an average decrease in steps.

    So it seems perfectly plausible that what you report could be correct.

    People may also remember the Wiborg study:

    SF-36 PF was measured in two of the studies* and an improvement in the average scores was seen over the controls without any difference between the two in step counts.

    This is relevant for the whole ME/CFS field. For example, the PACE Trial uses the SF-36 PF scale as one of its two primary outcome measures.
    People who start walking programs can rate themselves as having better "physical functioning" on this scale without necessarily doing any more steps or rate themselves as more improved than a control group but both groups can have a similar increase in step counts.

    When people such as the authors of the NHS Plus guidelines (for employers, occupational physicians, etc.) say that CBT or GET can restore the ability to work, what they may be referring to is improvements in the physical functioning scale to within the normal range. But we don't know that the person is actually capable of doing a normal amount of activity.
    Apologies that I am repeating myself.

    Basically, using questionnaires can be problematic. What one may end up measuring is something like an increase in confidence in an ability to exercise (which could be over-confidence).
    ------
    Here's a little info from another paper:
    One study (on a single patient)[1] found
    1. Friedberg, F. Does graded activity increase activity? A case study of chronic fatigue syndrome. Journal of Behavior Therapy and Experimental Psychiatry, 2002, 33, 3-4, 203-215

    * Stulemeijer M, de Jong LW, Fiselier TJ, Hoogveld SW, Bleijenberg G (2005). Cognitive behaviour therapy for adolescents with chronic fatigue syndrome: randomised controlled trial. British Medical Journal 330. Published online : 7 December 2004. doi:10.1136/bmj.38301.587106.63.
    and
    * Knoop H, van der Meer JW, Bleijenberg G (2008). Guided self-instructions for people with chronic fatigue syndrome: randomised controlled trial. British Journal of Psychiatry 193, 340–341.
     
  16. Dolphin

    Dolphin Senior Member

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    Krupp Fatigue Severity Scale

    From another paper:
    Krupp Fatigue Severity Scale

    'Patients are instructed to choose a number from 1 to 7 that indicates their degree of agreement with each
    statement where 1 indicates strongly disagree and 7, strongly agree.
     
  17. Dolphin

    Dolphin Senior Member

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    Yes, all four groups reported decreases in fatigue severity and improvements in physical functioning despite two of the four groups having decreased actigraphy scores.

    Indeed, in total, there was a decrease in average actigraphy scores across the whole cohort:
     
  18. oceanblue

    oceanblue Senior Member

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    I agree that questionnaires can be problematic, but what I'm concerned about is that actigraphs might be problematic too. They measure accelaration of one part of the body, not activity levels directly, hence my point about bending down to pick up a mug in the kitchen vs a heavy stone in the garden.

    As another example, walking on the flat would presumably give a similar reading as walking up a hill, though walking uphill would probably be slower and possibly produce a lower reading than for walking on the level. I'd love to see some evidence that says actigraphs really do correlate with work done in the real world, especially in a rehab situation. Likewise, I'd be keen to see the same for SF36 PF. Both are really trying to measure the same thing, as far as I can tell. If they give different results then either, or both, could be unreliable, which makes it difficult to interpret research.
     
  19. Dolphin

    Dolphin Senior Member

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    Ok. But I would imagine it would likely balance out (underestimates/overestimates) over enough measurements and enough people; although perhaps for any one individual there might be problems.
    I don't know the actigraph literature whether they have looked at such issues. Measuring work is fairly simple i.e. they could seek to validate it in the lab.

    It might be more problematic for people who engage in intense activities e.g. heavy lifting. Which isn't likely to be such a problem with an ME/CFS individual.

    I would have more confidence in the actigraph than asking somebody about their limitations which could be influenced by a whole host of factors e.g. if you go for walks of increasing length, you could think you are more capable of walks of a few blocks (or half a mile in some versions of the SF36 PF) or mile, even if you have reduced other aspects. The whole point of CBT and GET is to make people more confident about activity. A person at a start might underestimate their abilities so it could be that after the intervention somebody's view was more accurate. But that's not the same thing as their underlying biology has changed by much.
     
  20. oceanblue

    oceanblue Senior Member

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    The actigraphy website claims "Extensive research has confirmed our accuracy against the VO2 and doubly labeled water (DLW) methods of estimating energy expenditure", which sounds great but they don't cite any published evidence and a quick search suggests the published research isn't that convincing with actigraphs coming out as not bad but hardly very accurate eg.:
    http://www.springerlink.com/content/p10662330166wu10/
    http://journals.lww.com/acsm-msse/A...ve_Validity_of_Three_ActiGraph_Energy.27.aspx

    Given that the changes in activity after therapy are generally not huge an actigraph may not be very good at discriminating between small increases or small decreases in overall activity.

    The problem is that there doesn't seem to be any clear evidence as to wether SF-36 PF or actigraphs provide the most accurate measure of physical activity in these types of therapy trials, which makes it hard to interpret the data. Certainly, we can make a judgement as to which is best, but we can't be sure.
     

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