Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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#MEpedia: Page on Exercise

Discussion in 'Advocacy Projects' started by JaimeS, Aug 10, 2016.

  1. JaimeS

    JaimeS Senior Member

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  2. olliec

    olliec

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    I actually added this (two-part) talk by Mark VanNess that he did in Vancouver a few weeks ago which is really interesting:
    Part 1
    Part 2

    He says at a forthcoming meeting he'll be outlining recent results from work he's done looking at ventilatory dysfunction in ME patients.

    If we wanted an exercise physiologist or physical therapist to get up to speed about the problems of exercise in ME and how to design a program for patients, what would we want them to know about the science and the risks?
     
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  3. Sasha

    Sasha Fine, thank you

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    The IoM report listed some studies on the 2-day CPET.
     
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  4. JaimeS

    JaimeS Senior Member

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    Here are the resources about which I can add information:

    Snell, C. R., Stevens, S. R., Davenport, T. E., & Van Ness, J. M. (2013, November). Discriminative Validity of Metabolic and Workload Measurements for Identifying People With Chronic Fatigue Syndrome [Electronic version]. Phys Ther., 93(11), 1482-1492. http://doi.org/10.2522/ptj.20110368

    I'm shocked we haven't yet cited the PACE trial paper. Maybe we just don't want to mention it beyond linking out to it, but unfortunately it's part of the landscape:

    White, P., Goldsmith, K., Johnson, A., Potts, L., Walwyn, R., DeCesare, J., … on behalf of the PACE trial management group. (2011). Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Lancet, 377(9768), 823–836. http://doi.org/10.1016/S0140-6736(11)60096-2

    Plus it states that there is "a long-lasting increase of muscle metabolite-detecting receptors for pain and “fatigue” after moderate exercise" (White et al., 2012)....

    From my RFI:

    So let me take a moment to locate all those references in whole.

    -J
     
  5. olliec

    olliec

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    It's certainly not a recommendation and I think text elsewhere in the page makes clear that exercise carries risks and is very difficult, but I have added to the CDC exercise recommendations (alongside the UK section).

    Some restructuring is needed to improve the flow of the page and include the poor studies we all loathe, including PACE and the Cochrane meta study.
     
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  6. JaimeS

    JaimeS Senior Member

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    Neary PJ, Roberts AD, Leavins N, Harrison MF, Croll JC, Sexsmith JR. (2008). Prefrontal cortex oxygenation during incremental exercise in chronic fatigue syndrome. Clin Physiol Funct Imaging, 28:364–72.

    Peterson, P. K., Sirr, S. A., Grammith, F. C., Schenck, C. H., Pheley, A. M., Hu, S., & Chao, C. C. (1994). Effects of mild exercise on cytokines and cerebral blood flow in chronic fatigue syndrome patients. Clinical and Diagnostic Laboratory Immunology, 1(2), 222–226.

    Streeten D.H. (2001). Role of impaired lower-limb venous innervation in the pathogenesis of the chronic fatigue syndrome.Am J Med Sci, 321:163–7.

    Yoshiuchi K, Farkas I, Natelson BH. (2006). Patients with chronic fatigue syndrome have reduced absolute cortical blood flow. Clin Physiol Funct Imaging, 26:83–6.

    Miller, R. R., Reid, W. D., Mattman, A., Yamabayashi, C., Steiner, T., Parker, S., … Patrick, D. M. (2015). Submaximal exercise testing with near-infrared spectroscopy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients compared to healthy controls: a case–control study. Journal of Translational Medicine, 13, 159. http://doi.org/10.1186/s12967-015-0527-8

    Keller, B. A., Pryor, J. L., & Giloteaux, L. (2014). Inability of myalgic encephalomyelitis/chronic fatigue syndrome patients to reproduce VO2peak indicates functional impairment. Journal of Translational Medicine, 12, 104. http://doi.org/10.1186/1479-5876-12-104

    Vermeulen, R. C., Kurk, R. M., Visser, F. C., Sluiter, W., & Scholte, H. R. (2010). Patients with chronic fatigue syndrome performed worse than controls in a controlled repeated exercise study despite a normal oxidative phosphorylation capacity. Journal of Translational Medicine, 8, 93. http://doi.org/10.1186/1479-5876-8-93

    Vermeulen, R. C., & Vermeulen van Eck, I. W. (2014). Decreased oxygen extraction during cardiopulmonary exercise test in patients with chronic fatigue syndrome. Journal of Translational Medicine, 12, 20. http://doi.org/10.1186/1479-5876-12-20

    (both Vermeulen articles look good, even though I only cited one, above.)

    Russell, L., Broderick, G., Taylor, R., Fernandes, H., Harvey, J., Barnes, Z., … Fletcher, M. A. (2016). Illness progression in chronic fatigue syndrome: a shifting immune baseline. BMC Immunology, 17, 3. http://doi.org/10.1186/s12865-016-0142-3

    Hornig, M., Montoya, J. G., Klimas, N. G., Levine, S., Felsenstein, D., Bateman, L., … Lipkin, W. I. (2015). Distinct plasma immune signatures in ME/CFS are present early in the course of illness. Science Advances, 1(1), e1400121. http://doi.org/10.1126/sciadv.1400121

    Nijs, J., Nees, A., Paul, L., De Kooning, M., Ickmans, K., Meeus, M., & Van Oosterwijck, J. (2014). Altered immune response to exercise in patients with chronic fatigue syndrome/myalgic encephalomyelitis: A systematic literature review. Exerc Immunol Rev., 20, 94-116. Retrieved June 30, 2016, from http://www.medizin.uni-tuebingen.de/transfusionsmedizin/institut/eir/content/2014/94/article.pdf

    Morris, G., & Maes, M. (2014). Mitochondrial dysfunctions in Myalgic Encephalomyelitis / chronic fatigue syndrome explained by activated immuno-inflammatory, oxidative, and nitrosative stress pathways [Electronic version]. Metab Brain Dis, 29(19), 19-36.
     
  7. olliec

    olliec

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    Jaime, the 2013 Snell study is referenced in the page already. I've moved Cochrane & PACE into the "Studies" section, so a little more visible than "See also". Maybe someone can write a paragraph to mention these studies and put them in context, especially with the criticisms.
     
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  8. JaimeS

    JaimeS Senior Member

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    Just coding those may take awhile. If someone else is willing to do that coding, I'll start putting the information in.
     
  9. olliec

    olliec

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    I found a talk by Christopher Snell and several by Staci Stevens and have added those, so the page now has eight talks by Workwell folk on it. It's so great they can measure our disability and objectively deflect accusations of lack-of-effort.
     
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  10. JaimeS

    JaimeS Senior Member

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    or would we rather discuss restructuring first?
     
  11. olliec

    olliec

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    Jaime that's a great list. Later we can refine/focus more on the better studies, but for now getting them all listed is useful so anyone can easily find them. I am happy to add the references, but it will be tomorrow as need to rest soon.

    Does anyone know of any study charts that we are missing? These visual images are so important to communicate what is going on post-exercise. I have added an image (I'll replace it with a better quality image from the original study tomorrow) to show post-exercise symptom exacerbation from the 2010 VanNess et al study.
     
  12. JaimeS

    JaimeS Senior Member

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    Let me see what I can find. A lot of what I would recommend to be there (like the amazing Rutherford and Newton study on muscles in ME) is already there. But you're right: visuals SOOOO imp't.
     
  13. olliec

    olliec

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    For my brain at least I'd prefer to see all the relevant studies including before restructuring, but don't let me stop you if you see improvements to make now.

    The page doesn't flow well at the moment and should explain the story, perhaps:
    1. Exercise is good for healthies but not ME patients
    2. What happens when patients exercise and what the studies found
    3. Clinical approaches that have some moderate success, but not with severe patients, and not in treating the core of the disease (eg probably only anerobic improvements)
    4. Harmful & misleading recommendations/studies based on conflict-of-interest-polluted research from the usual suspects, inc Cochrane
     
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  14. olliec

    olliec

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    The 2010 VanNess graphic is really hideous the way it displays, apologies to peoples' eyes, I will make improvements tomorrow (I copied the image from the PEM page).
     
  15. JaimeS

    JaimeS Senior Member

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    Koopman, F.S., Voon, E.L., Beelen, A., Bleijenberg, G., de Visser, M., Brehm M-A., & Nollet, F. (2015, August). No reduction in severe fatigue in patients with postpolio syndrome by exercise therapy or cognitive behavioral therapy: results of an RCT. Neurorehabilitation and Neural Repair, 1-9. doi: 10.1177/1545968315600271

    Neary PJ, Roberts AD, Leavins N, Harrison MF, Croll JC, Sexsmith JR. (2008). Prefrontal cortex oxygenation during incremental exercise in chronic fatigue syndrome. Clin Physiol Funct Imaging, 28:364–72.


    It appears we don't have these ones -- important! I'll get back to you in a mo' about images.
     
  16. JaimeS

    JaimeS Senior Member

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    And still, sadly, the CDC. Even after Unger's latest report in 2016. :(
     
  17. JaimeS

    JaimeS Senior Member

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  18. simeyss

    simeyss

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    Not sure if it's already there but, in terms of visuals, those graphs from the Lights' study re changes in gene expression are also good.
     
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  19. JaimeS

    JaimeS Senior Member

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    That's such an interesting (albeit small) study that I wish they'd spent a bit more time on the images, y'know? They could be very compelling.

    You took the words right out of my mouth, @simeyss!
     
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  20. olliec

    olliec

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