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Improving Wikipedia's references to ME/CFS

Discussion in 'Advocacy Projects and Campaigns' started by Dr Carrot, Jan 30, 2018.

  1. rvallee

    rvallee Senior Member (Voting Rights)

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    People just forget that emotions are also thinking, is the brain doing its thing. They are arbitrarily separated because of all the wishy-washy mind stuff and that we only consider intellectual thinking as thinking, but emotional processing is still the brain doing its thing, requiring energy, and thus is exertion, leading to PEM.

    It's just that this psychosomatic ideology still being popular has lead to emotions being classified as a separate thing that does not involve the brain. Or whatever. But there's no free lunch, the brain is very hungry in energy and has waste byproducts that need time and sleep to be cleaned up.

    This shouldn't be confusing, but unfortunately we are in the golden age of medical pseudoscience.
     
  2. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    yes, uploaded yesterday
    Code:
    https://en.wikipedia.org/wiki/File:Triggers_of_Post-exertional_malaise.svg#filehistory
     
    Peter Trewhitt likes this.
  3. NelliePledge

    NelliePledge Moderator Staff Member

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    Eg getting upset due to a bereavement I have had PEM due to that. Bereavement is very energy draining.
     
    Last edited: Dec 7, 2022
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  4. Sean

    Sean Moderator Staff Member

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    Anything that involves activity/effort of any kind. Including basal metabolism.

    I think there is limited value in trying to identify specific triggers or exacerbators. Though some may well be worse than others, but probably only because they involve more activity/effort.

    The more we do, the sicker we get. That is the core message on this stuff. The specifics are almost irrelevant, particularly from a practical management view. It is the overall level of activity/effort that counts.
     
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  5. Shadrach Loom

    Shadrach Loom Senior Member (Voting Rights)

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    I think it’s a reasonable distinction, at least for people who find that emotional cognition is particularly demanding. A Teams meeting in which I am robustly challenged takes much more of a toll than one where minions respectfully seek direction, screwing my calculations about how much work can be done in between periods of hibernation.
     
  6. duncan

    duncan Senior Member (Voting Rights)

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    Yes. I know we are all different, and the disease manifests like it's incorporated into our DNA, it's that individualistic, but there are commonalities. The brain is one, for my money the key one.

    I am at my second best when flat on my back. When I stand or even sit, my brain slowly begins to, I don't know, fail to do it's job in any sort of competency. The longer I am upright, the stupider I get. I can only think linerally in very confined and rigid directions. I can't make mental left or right turns.

    Moreover, the harder and longer I concentrate, the worse I feel. I literally feel a suffocating poison slowly course through my veins and arteries, like low grade battery acid. If i get angry or exited or sad or too happy, that toxin's spread is faster and more bitter and devastating and forces me to bed where I seek solace in sleep that only reluctantly ever comes. Brain PEM is my nemisis.

    Which is why I am at my best anymore when I am asleep.

    Wish I could convey a taste of that bitter brain toxin to Wikipedia.
     
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  7. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    FMMM1, Ariel, Sean and 10 others like this.
  8. duncan

    duncan Senior Member (Voting Rights)

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    Odd that they would list "doctor's appointment" three times.

    Oops. Vacation there three times as well.

    It's appears to be a counterproductive list in the sense that it may be easy to misconstrue. . Perhaps it would have been safer merely to have advised that any form of exertion, be it physical, cognitive or emotional, can elicit various forms of PEM. Because seriously, the potential list is bound to be absurdly long, so much so to outsiders we will look mental. Almost anything can at times require exertion. If you cannot tolerate exertion, then you need to be wary of almost anything. It just muddles things all the more that pwME do not share triggers uniformly, or have PEM manifest uniformly.

    Of course, in the real world, over time, we are forced to each feel our way toward safer things and learn to steer away from ones more hazardous.
     
    Last edited: Dec 7, 2022
  9. CRG

    CRG Senior Member (Voting Rights)

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    Just to emphasise - this isn't an issue with Wikipedia - the graphic is taken from a published study:

    Background: Myalgic encephalomyelitis/chronic fatigue syndrome is characterized by persistent and disabling fatigue, exercise intolerance, cognitive difficulty, and musculoskeletal/joint pain. Post–exertional malaise is a worsening of these symptoms after a physical or mental exertion and is considered a central feature of the illness. Scant observations in the available literature provide qualitative assessments of post–exertional malaise in patients with myalgic encephalomyelitis/chronic fatigue syndrome. To enhance our understanding, a series of outpatient focus groups were convened.

    Methods: Nine focus groups totaling 43 patients who reported being diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome were held between November 2016 and August 2019. Focus groups queried post–exertional malaise in daily life and participants' retrospective memory of post–exertional malaise that followed an exercise provocation with a cardiopulmonary exercise test. Data analysis followed the grounded theory method to systematically code and categorize the data to find meaningful patterns. A qualitative software package was used to move text into categories during data coding.

    Results: A wide range of symptoms were attributed to exertion both in daily lives and following cardiopulmonary exercise testing. While three core symptoms emerged (exhaustion, cognitive difficulties, and neuromuscular complaints), participants' descriptions were notable for their unique individual variations. Of 18 participants who responded to questions centered around symptoms following a cardiopulmonary exercise test, 17 reported that symptoms started within 24 h and peaked in severity within 72 h following the cardiopulmonary exercise test. Patients described post–exertional malaise as interfering with their ability to lead a “normal” life.

    Conclusion: The experience of post–exertional malaise in myalgic encephalomyelitis/chronic fatigue syndrome varies greatly between individuals and leads to a diminished quality of life. myalgic encephalomyelitis/chronic fatigue syndrome patients describe post–exertional malaise as all-encompassing with symptoms affecting every part of the body, difficult to predict or manage, and requiring complete bedrest to fully or partially recover. Given the extensive variability in patients, further research identifying subtypes of post–exertional malaise could lead to better targeted therapeutic options.

    https://www.frontiersin.org/articles/10.3389/fneur.2020.01025/full
     
  10. NelliePledge

    NelliePledge Moderator Staff Member

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    Doctors appointment involves physical and cognitive exertion and can be emotionally demanding so I can see why it’s in all 3 lists
     
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  11. Andy

    Andy Committee Member

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    Thread here, Characterization of Post–exertional Malaise in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (2020) Nath et al.
     
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  12. duncan

    duncan Senior Member (Voting Rights)

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    Ah, I did not glean that from the Wikipedia page. The chart just seems to stand out without an obvious reference - not obvious to me, at least. To me, I fear someone may still misconstrue.

    Now that I realize it's a focus group graphic, I agree. And from my own experience, I agree.
     
  13. CRG

    CRG Senior Member (Voting Rights)

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    Yeah it's one of those "if you know your way around it's obvious" and to everyone else the key info is "hiding away in some corner", thing. Way to check is click on the graphic which should open it in its own window and then all the relevant info 'should' be at the bottom - in this case:

    "The Quirky Kitty - Own work Adaptation of a diagram from the scientific paper "Characterization of Post–exertional Malaise in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome." (DOI Link: doi:10.3389/fneur.2020.01025) by Barbara Stussman, Ashley Williams, Joseph Snow, Angelique Gavin, Remle Scott, Avindra Nath, and Brian Walitt, CC BY 4.0 International."

    There are more options to view the file on the "More details" blue button.

    Anyway - good work by the editor Quirky Kitty even if the material isn't all we would like.
     
  14. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  15. Three Chord Monty

    Three Chord Monty Senior Member (Voting Rights)

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  16. CRG

    CRG Senior Member (Voting Rights)

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    Just to note the efforts of editor Ward20 who has engaged quietly and systematically with the CFS article for year after year. I know that many people are frustrated by the WP articles on ME/CFS but they would be far worse were it not for Ward20 and a few other braves souls who keep slogging away sticking diligently to the Wikipedia rules and maintaining (saint like !) good relations with WP crowd.
     
  17. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    (I don't know how long ago this entry was made)
    Occupational burnout

    https://en.wikipedia.org/wiki/Occupational_burnout
     
  18. CRG

    CRG Senior Member (Voting Rights)

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    Last edited: Jun 26, 2023
  19. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    2-day CPET
    https://en.wikipedia.org/wiki/2-day_CPET
     
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  20. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Just saw that there's a wikipedia page on David Tuller :)

    @dave30th :

    https://en.wikipedia.org/wiki/David_Tuller

    From Wikipedia:

    References seem a bit weird, e.g. the Reuters' piece given multiple times, including as a reference to his academic affiliation.

    I think the references 1 and 2 should be replaced with a reference to his university page:

    https://journalism.berkeley.edu/person/david_tuller/

    And some other references I think need to get checked/ replaced, too -- maybe also the link to the latest crowdfunding could be added?


    (Sorry won't be able to make edits on wikipedia myself in the nearer future)
     
    Last edited: Oct 4, 2023
    ahimsa, Michelle, EzzieD and 4 others like this.

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