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Stanford ME/CFS Initiative: PEM Avoidance Toolkit

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Andy, Jan 23, 2018.

  1. Andy

    Andy Committee Member & Outreach

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    From a Facebook post of theirs
    Code:
    https://drive.google.com/file/d/1kr_OU3IHdBwl2VSgyfYNjJ4W5ltxNGok/view


    They have just recently created a Facebook page - https://www.facebook.com/StanfordCFSInitiative/
     
  2. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    This would have been great when I was newly ill. Life saving. However now I'm severe and realiant on care from others I simply can't organise my life perfectly and PEM is very hard to avoid when the slightest things set it off. As well as activity management we need treatments to stop PEM kicking in so hard and severe ME recognised more as being the most needy group because those case studies make life look pretty ok with pacing and accessing support etc.
     
  3. Trish

    Trish Moderator Staff Member

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    I agree it looks pretty useful for new sufferers.

    My main criticisms:
    I'm amazed they don't recommend heart rate monitoring, and probably step monitoring as well. I've found these far more useful and far less of a chore than all that record keeping which I was hopeless at.

    And I agree, @rustyj, that the examples are totally unrealistic. Even in my early years when I was mildly enough affected to be able (with difficulty and lots of crashes) to continue working part time and raising kids, I could not do any housework, and certainly could not have played any sport. They really need to include some who are at least moderately affected.

    @Cinders66, I agree it really should at least mention severe sufferers and say they need more complex support.

    And @rustyj, I've noticed this is your first post. You are very welcome, I hope you'll enjoy being here.
     
  4. Frogger

    Frogger Senior Member (Voting Rights)

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    I think this a great resource to help introduce doctors to your reality. If you can get them to take interest in your case. I have observed that doctors often ignore even their own forms. It is hard to get a treatment plan or diagnosis with complex symptoms because sometimes, 15 minutes is all you get.
     
  5. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    This looks like "PEM" as a Lifestyle problem. How can food as an example cause PEM in a sizable group of well defined patients?

    The examples are dreadful
     
    Last edited: Jan 23, 2018
    oldtimer, TigerLilea, Awol and 6 others like this.
  6. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    I notice that sensory overload is classed as emotional over exertion? Why? If I am in a noisy place - let's say the doctors waiting room where on the one hand I have to listen out for my name to be called but on other hand there are various conversations going on this is exhausting, but not emotional?

    If I'm sitting in a moving car watching the countryside flash by is not emotional but wears me out cognitively.

    Once I started to understand that PEM exists and that it was something I needed to manage I set up a plan along the lines of this. It was a bloody nightmare. I was so busy clock watching everything I did, planning to the smallest detail, writing things down in my diary it nearly sent me insane.

    I ended up focussing on little else but my condition. It didn't make me better and then that became a stick to beat myself with. It stopped me enjoying the little things I could do, because I was constantly in monitoring mode & thinking my 10 minutes is up.

    It may help some people but for others it could just be a stick to beat yourself with.
     
    Last edited: Jan 23, 2018
  7. Wonko

    Wonko Senior Member (Voting Rights)

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    A baked potato with tuna and sweetcorn definitely caused me to experience mild PEM yesterday :p
     
  8. Trish

    Trish Moderator Staff Member

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    Me too, and I quickly gave up trying. I didn't find that sort of detailed diary keeping helpful at all.
     
  9. Mij

    Mij Senior Member (Voting Rights)

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    I agree. Getting appropriate sleep will not prevent PEM either.
     
  10. Louie41

    Louie41 Senior Member (Voting Rights)

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    It appears they tout their patient involvement in the development of this instrument. Makes me wonder how they did on the criteria set out by Jennifer Johanneson in the article posted by @TrixieStix on Sunday.

    Sorry. Don't have the brainpower to figure out how to post a link. :(
     
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  11. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    What I was desperate for when I got ill was a quick and easy tracker so I could work out my triggers for PEM. The only thing that worked well was a phone based symptom tracker that I customised and heart rate monitor (also synced with my phone app). All that early days stuff of filling a sheet for the activity diary was very cumbersome especially when you are in near constant brain fog. Im surprised they aren't looking at tools to help in the management of PEM?
     
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  12. Trish

    Trish Moderator Staff Member

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    Are there any? Apart from rest and possibly some nutritional supplements that only have anecdotal evidence to back them, so can't be recommended by reputable scientists.
     
  13. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    I was thinking of a tracking app for your phone? Given that OMF are into gadgets an app that synced your heart rate data with Daily symptoms etc would be useful. Various other medical charities are promoting apps to help with pacing and management. Just seems surprising.
     
  14. Revel

    Revel Senior Member (Voting Rights)

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    Dang! You beat me to it!

    Aside from their examples, I get sensory overload as a passenger in a car, especially if the speed of the vehicle exceeds 30 mph. It has nothing to do with "emotion" and everything to do with my brain not being able to process the amount of sensory information being delivered at high speed. On the rare occasion where I cannot avoid a car journey, I usually keep my eyes closed - even when I get to leave the house, I still don't see all that much of the outside world!
     
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  15. Trish

    Trish Moderator Staff Member

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    Ah, OK, I agree with this. I think they have definitely missed the most useful advice by not mentioning HR monitoring and tracking apps.

    I was including these as ways to avoid PEM, rather than managing it once it hits. I guess it depends whether the PEM is bad enough to put you to bed for the duration, in which case all you can do is rest.
     
  16. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    Just thought it worth mentioning that it's never a good idea to drive with your eyes closed . Sorry couldn't resist :laugh:
     
  17. Revel

    Revel Senior Member (Voting Rights)

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    :facepalm:
     
  18. Andy

    Andy Committee Member & Outreach

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    Not available yet but Lipkin's team has said that it will develop one
    https://www.mailman.columbia.edu/pu...yelitischronic-fatigue-syndrome-collaborative
     
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  19. MErmaid

    MErmaid Guest

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    It looks great for Moderate/Mild and Mild PwME. If this was their target audience, then it’s very useful. For Severe it won’t apply. Severe/Moderate it may apply at infrequent times. For Moderate it may apply sometimes.

    I hope you can see that there is a knowledge gap when it comes to understanding the needs of Severe PwME. Even at a leading institution, with a ME Clinic, with a one year wait, it is absent. I never saw a Severe PwME at the Stanford ME Clinic. They mostly looked Moderate/Mild to Mild.

    And the narrative examples, fit the exact type of PwME, I observed.
     
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  20. MErmaid

    MErmaid Guest

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    Sorry, but I think this knowledge is sorely lacking; we need to change this.
     
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