Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
http://phoenixrising.me/research-2/the-brain-in-chronic-fatigue-syndrome-mecfs/choline-on-the-brain-a-guide-to-choline-in-chronic-fatigue-syndrome-by-cort-johnson-aug-2005
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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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    I think maybe we should restructure now, actually -- because that lets us know where the gaps are. I might have to 'uncouple' from this thread a mo' if we're doing that, to think. What say you, Peoples of This Thread?

    -J
     
  2. JaimeS

    JaimeS Senior Member

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    OK, unless anyone objects (@ollie might have gone off to do other things!) I'm going to start in on structuring it the way he suggests.

    -J

    [Edit: I've saved a copy of the original coding, just in case.]
     
  3. olliec

    olliec

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    Go for it!
    upload_2016-8-10_17-7-39.png
     
  4. JaimeS

    JaimeS Senior Member

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    Awesome -- I shall!

    Decoupling now; won't respond until later.
     
  5. slysaint

    slysaint Senior Member

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  6. JaimeS

    JaimeS Senior Member

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    Great, thank you!
     
  7. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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  8. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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  9. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    One more I just thought of... the Belgian government review that showed unemployment got worse with GET treatment

    Here is a secondary source that cites / describes those findings in english:
    https://niceguidelines.files.wordpress.com/2009/10/twisk-maes-cbt1.pdf

    the relevant paragraph from the above:
    Ok. I promise to stop bombarding you with links now. :)
     
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  10. JaimeS

    JaimeS Senior Member

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    That's a real gem, Kyla! Thank you. :D
     
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  11. Fred1234567

    Fred1234567

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    A great job to see people working on this and it will be a great resource.
    I'm thinking that this section could be about energy conservation and activity management of which exercise is one component.
    Why I think this is that exercise can't be separated from pacimg ie depending on how well you are maybe you have to choose between 30 seconds recumbent exercise on your bed and using a bed pan or crawling to the toilet.
    At whatever level of health people with ME/CFS are facing daily and continuous choices about energy usage, as we don't have enough to meet our needs/desires. Whether or not to and how to exercise is just one of many choices we face on a daily basis.
    Is my heart rate too high this morning? Doesn't my heart rate variability indicate I'm too stressed to exercise/to read/to watch a TV program?

    I wonder if we would be better served by considering all components of an energy conservation/pacimg/activity/resting regime, together as integrsl to how we manage to conduct our lives.
    Activity/movement is necessary and Dr. Lucinda Bateman wrote a good piece on the exercise conundrum- that I will hunt out.
    Our trusted experts are all saying appropriate activity is necessary. It's finding what is appropriate that is the challenge.
    Exercise is defined as anything that increases your heart rate, for people with ME/CFS this can be lifting an arm, rolling over in bed, walking to the toilet. Exercise for us is much much less activity than for a normal person.

    Workwell foundation has the first step in its pacimg/ management program to reduce activity sufficiently to cease crashing and burning and energy conservation and aneleptic exercise?

    The ICC recommends that people stay under their anerobic threshold (AT) - this little gem of information appears to have been largely overlooked but the science behind the reduced anerobic threshold found in people with ME/CFS forms the basis of the Workwell programs.

    It is also recommended that people take their temperature before and after activity, if you do too much it will reduce. I've not seen any research into this.

    It is clear that too much and the wrong exercise is harmful- eg the MEAssociation survey found 74% of people harmed by PACE style GET. But that leaves 26% helped or not harmed. So how what/why - as the work of Workwell shows it is possible to use readily available and cheaply obtained physiological data to aid Monitoring activity/exercise.

    Dr. Nancy Klimas has a series of videos with some good information but appears to focus on the significantly less disabled people than Workwell and suggests a starting point of 5 minutes 3 times a day whereas Workwell acknowledges the sicker patients and has people stretching in bed for a year.....
    It's hard to out all of this into a framework.

    The use of heart rate monitors to mange activity is being found beneficial but even that the use of that simple tool throws up curved balls that have yet to be explained- researched in the literature.
    Eg
    1. Do too much HR rises.
    2. Csrry on doing too much and may seen peaks and dips in HR (tachycardia/bradycardia)
    3. Carry on doing too much and HR lowers and stays at an "artificially" low (for the person level".
    4. Cease activity and lie down to rest- HR rises to higher than usual resting heart rate.
    5. Continue to rest and over time (hours) heart rate slowly resting to normal resting heart rate.
    6. Next morning resting heart rate may slightly lower than usual but heart rate variability will indicate a stressed ANS system.
    7. Delayed - a day/2 days later - morning resting HR higher than usual heart rate variability still indicating ANS stressed but may be less stressed than the previous day. Exacerbation of symptoms kicks in.
    8. Slow return of heart rate ANS heart rate variability to normal and symptom Laos to baseline.

    The points 1-8 appear to be common and are based on comments made by people pacimg with heart rate monitors. Fred Freighberg is starting a study looking at continuous heart rate and acelerometer that hopefully will shed light on this pattern.

    Anyway just a few ideas.

    Regarding PACE etc- maybe the page could be divided into sections the top one being helpful patient and expert supported key studies and the bottom one being other research?
     
  12. halcyon

    halcyon Senior Member

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    Or that didn't have ME in the first place.
     
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  13. sue la-la

    sue la-la

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    i can do the coding - ie converting naked url into a formal reference/citation - but won't be able to start for 6-8 weeks.

    if you type it this way <ref>https://www.drugs.com/monograph/acetaminophen.html</ref>, it's still a usable link, and the extra info (authors, title, date, etc) can be added later.

    [please don't overwhelm me with 100,000 naked links - they take time to do]
     
  14. olliec

    olliec

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    I've replaced the VanNess 2010 chart pair with a better version (sadly the study is behind a paywall), and aligned all the charts to the right a bit more neatly with captions making clear where they came from. I've also added the IOM report PEM chart. I've also added several more talks by researchers, a link to the preview of Klimas' pay-per-view video, and Dan Moricoli's video about his experience.

    Note we do have separate pages for PEM and the activity envelope (though inevitably the exercise and PEM pages will overlap a little):
    http://me-pedia.org/wiki/Post-exertional_malaise
    http://me-pedia.org/wiki/Energy_envelope
    http://me-pedia.org/wiki/PACE (nearly 200 references cited now)
    (PRO TIP: there shortcuts so for example to open the PACE or PEM or IOM pages just search MEpedia for "pace", "pem" or "iom" and it'll take you straight to the page).

    I've added a section of quotations and added these two gems, but are there others?
    "Our studies clearly show that dynamic exercise like walking or jogging exacerbates symptoms associated with ME/CFS" VanNess
    "The whole idea that you can take a disease like this and exercise your way to health is foolishness. It is insane" Paul Cheney.

    I agree that it makes sense to include all the relevant studies, but to look to consolidate the more valuable ones further up the page, and the others lower down, adding explicit details of the flaws. It's so great to add bad studies with clarification of the problems as it's helpful for patients to learn what makes a good/bad study.

    I'm drowning a bit in suggestions here, if anyone has time to implement some of the brilliant resources being posted that would really help!

    http://me-pedia.org/wiki/Exercise
     
    Last edited: Aug 11, 2016
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  15. olliec

    olliec

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    The relevant pages of the IOM report, that list studies that looked at the effects of exertion are pages 84-86, here http://www.nap.edu/read/19012/chapter/6?term=exercise#84 I've added that direct link to the PEM page.

    I'm compiling some of the studies from the IOM report to make sure we have all the key studies from there. I need to stop today but will hopefully be able to start adding those and refs for those Jaime found over the next few days. Any help appreciated!

    We need to push some of the content from the Exercise page into the PEM page, and likewise the two-day CPET page which is here http://me-pedia.org/wiki/Two-day_cardiopulmonary_exercise_testing - ie the Exercise page is slimmed down, and directs people to a set of pages on PEM, testing (2-day etc). Moving stuff around is easier once it's been added though!
     
  16. JaimeS

    JaimeS Senior Member

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    I can work on this for another hour today, but I'll copy all the coding before I start -- sounds like you guys got a lot further which is awesome!
     
  17. olliec

    olliec

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    I ran out of steam last week with this page, but am now doing some more work on it. First off, fixing a couple of broken refs in the page.

    If anyone else is around and wants to jump in, I'd appreciate any help!
     
  18. JaimeS

    JaimeS Senior Member

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    I'll be ready in 5
     
  19. JaimeS

    JaimeS Senior Member

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    OK here! Anything in particular I should aim to work on, or just go to the page and see what it needs?
     
  20. olliec

    olliec

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    JaimeS likes this.

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