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B-Lymphocyte Depletion in Patients With ME/cfs: A Randomized, Double-Blind, Placebo-Controlled Trial (2019) Fluge et al

Discussion in 'ME/CFS research' started by Milo, Apr 1, 2019.

  1. Andy

    Andy Committee Member

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    I thought I could remember that we had more of a discussion on why there might have been so many responders in the placebo group, if I'm right can anybody point me towards it?

    It would also be nice to know what this actually showed and how it was measured, does anybody have access to the paper for this detail? I still can't access it via Sci hub.
     
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  2. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    I found it interesting that in the 2015 report in PLoS ONE, they mention that the responder group had an impressive number of steps per day: almost a mean of 10.000.
    One would think that this was more than just a placebo effect.
     
  3. Trish

    Trish Moderator Staff Member

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    Does it say what their step count was before treatment?
     
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  4. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    Good point, don't think so, no. Should reread the papers to be sure. But I suspect that one can assume that patients receiving a ME/CFS diagnosis in this study would have had a much lower amount of steps per day.
     
  5. lycaena

    lycaena Senior Member (Voting Rights)

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  6. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    I think studies that measure step counts usually show that there's a wide range of activity with ME patients. Some are under- or over-active (as in over 10K steps per day), some are in the middle, but these figures are largely consistent (i.e., there isn't evidence of boom and bust).

    I think it's feasible that some mild patients are actually doing more than 10,000 steps per day, provided they do them at their own pace. Especially those milder patients who manage to stay in employment.

    ETA: I think Ramsay and the ICC both mention that athletes who get ME might still appear to do a lot comparatively, but it's still a relatively large loss of function compared to what they could do before.
     
    Last edited: Aug 11, 2019
  7. Trish

    Trish Moderator Staff Member

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    There is also the question of how accurate step counters are. Commercial wrist worn ones are measuring wrist movement. Taking a jumper off while sitting has counted as 20 steps on mine!
     
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  8. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Fanning oneself can cause hundreds of 'steps' to materialise out of nowhere too. The counters may not accurately measure steps but they might be considered a loose measure of 'activity' (or at least movement) instead.

    Comparing patients with each other is probably less useful than comparing patients with themselves. That and using the same step counter over the course of the intervention might be useful at capturing changes in movement frequency.

    My steps doubled when I changed to a different step counter. I wasn't more active, but it was measuring things differently. However, my activity levels are still the same.
     
    Last edited: Aug 11, 2019
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  9. Andy

    Andy Committee Member

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  10. Rain

    Rain Senior Member (Voting Rights)

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    They used the brand Sensewear - used on the upper arm.

    Edit: Sensewear, also track a lot more than a Fitbit. Position (standing/sitting/horizontal), temperature, galvanic skin response and more.
     
    Last edited: Aug 11, 2019
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  11. Andy

    Andy Committee Member

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    I've now got access to the text of the paper (thanks to the person helping me out there).

    It says
    I was initially confused by number of steps not increasing but physical activity level increasing but they explain
    So, on average, both groups did have a "slight" improvement in physical activity level but neither groups increased the number of steps taken, despite 35% of the placebo group and 26% of the treatment group self-reporting an improvement.

    So, to me, this strongly suggests, at best, an improvement more in how the patients managed their ME through pacing than for any other reason, as I would argue that any practical improvement in their ME would result in noticeable increases in step count. I know that when I pace properly I can be far 'busier' around our home but that doesn't translate into any substantial increase in steps. I suppose it depends what, practically, 3.5 metabolic equivalents (METs) equates to in real life.

    To answer that, there is this, from https://en.wikipedia.org/wiki/Metabolic_equivalent
    Screenshot 2019-08-11 at 14.19.20.png

    Does how I'm thinking of this match what other people experience?

    The reason I'm looking at it is that I have been asked if, from a patient point of view, the self-reported improvement in fatigue is likely to be meaningful in any way. I'm of the opinion that, without an increase in step count, it isn't.
     
  12. Trish

    Trish Moderator Staff Member

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    No questionnaire measure I've seen of fatigue is meaningful in ME, I think. We need objective outcomes.

    I probably would have self reported more fatigue when my ME was mild and I was doing more, so the need to stop because of fatigue was more troublesome and the pain and drained feeling were worse. Now my life has more or less ground to a halt, I don't have to stop because of fatigue as often, because I'm not doing anything anyway. Similarly my pain probably less now too, because the more I do physically, the more pain I get.

    When I had young babies and hardly any sleep I was very very fatigued, but also perfectly healthy.

    Fatigue is such a slippery concept, measuring it is with a questionnaire is like measuring integrity with a ruler. It's meaningless.
     
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  13. Ebb Tide

    Ebb Tide Senior Member (Voting Rights)

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    Jennie Spotilla writes about METs in relation to her 2 day CPET in her Occupy Me blog: http://occupyme.net/exercise-testing-and-results/

    Full Compendium Physical Activities of METs here: https://sites.google.com/site/compendiumofphysicalactivities/

    METs in relation to pwME and 2 CPET is also discussed on pages 11 & 12 of the Workwell paper published earlier this year, discussed here, with useful information on Table 7:

    https://www.s4me.info/threads/front...ion-in-me-cfs-prov-2019-davenport-et-al.8482/

    If I am reading it correctly, Workwell found that 3.5 METs is beyond what the patients they have tested can manage and stay under their VAT with or without PEM.
     
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  14. Sam Carter

    Sam Carter Established Member (Voting Rights)

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    Am I right in thinking that the results of the three substudies mentioned in the trial's protocol have not been published? [*]

    Even if there were no differences between the placebo and rituximab groups, I'd like to see how the participants' endothelial, cardiopulmonary and gastrointestinal function compared to what would be expected in age and sex matched healthy people.

    [* from: https://clinicaltrials.gov/ct2/show/NCT02229942]

    """"""
    Three substudies will be performed:

    Endothelial function: assessment of Flow-Mediated Dilation and skin microcirculation at baseline and repeated during the time interval 17-21 months.

    Cardiopulmonary exercise test for two following days: assessment at baseline and repeated during the time interval 17-21 months.

    Gastrointestinal function: assessment at baseline and repeated during the time interval 17-21 months.
    """"""
     
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  15. rvallee

    rvallee Senior Member (Voting Rights)

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    I have seen far too many times my Fitbit celebrating reaching the daily step count after spending a full hour or more sitting down to trust it.

    The accuracy on wrists is terrible. And it wouldn't be much better on ankles, especially those with restless leg.
     
  16. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    This conversation has made me notice that I actually have more steps when feeling worse than usual. I expect this is a result of when I'm feeling more ill I actually move more -- not walking but agitated movement because I'm uncomfortable.

    I often wondered (for like a nanosecond) why this seemed to be. But this thread made me stop and consider this is what is likely going on. I know I'm not walking more because my steps are so restricted and routine.
     
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  17. andypants

    andypants Senior Member (Voting Rights)

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    When I’m feeling worse I tend to move more too. Partially because I crave distraction from feeling horrible and partially from being wired.
     
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  18. Marky

    Marky Senior Member (Voting Rights)

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    Yes.. Haha

    Ive had a worsening this summer after gradual exercise, and I have ended up doing whatever makes me feel bad twice because my thinking is like "there is NO way im going to bed unable to finish the dishes", so I go back to do it only to get PEM again.
     
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  19. Andy

    Andy Committee Member

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    As far as I'm aware, yes, you are right.
     
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  20. Rain

    Rain Senior Member (Voting Rights)

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    Last edited: Sep 7, 2019

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