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Terrible Wikipedia article on MECFS! (CBT, etc)

Discussion in 'General ME/CFS Discussion' started by gabriella17, Nov 16, 2017.

  1. gabriella17

    gabriella17 Senior Member

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    Have any of you read the Wikipedia article for ME? This thing needs SERIOUS editing of misleading information. I can't imagine how many people might have heard about ME, then googled it and went to the Wikipedia page. No wonder there's so much misconception!

    I've copied and pasted just some areas of concern. My comments are in red.

    #1
    Chronic fatigue syndrome
    From Wikipedia, the free encyclopedia
    (Redirected from Myalgic encefalomyelitis)
    Note that the article is not only under "Chronic fatigue syndrome", but encephalomyelitis is misspelled. I think the article should be under Myalgic Encephalomyelitis, with the term "chronic fatigue syndrome" redirecting to it.

    #2
    "Evidence suggests that cognitive behavioral therapy and a gradual increase in activity suited to individual capacity can be beneficial in some cases.[5][6] In a systematic review of exercise therapy, no evidence of serious adverse effects was found; however data was insufficient to form a conclusion.[6]"
    This is at the top! 3rd paragraph down.


    #3 Below is part of the contents section:

    5 Management


    See "5 Management" - CBT & Exercise are the first listed treatments. Medication section needs to include a lot more, and should (imho) be listed at the top.

    #4
    "Cognitive behavioral therapy[edit]
    In 2017, the U.S. Centers for Disease Control and Prevention stated that speaking with a therapist may help.[86] "
    This is the first sentence! Really?


    Is anyone here willing/able to edit this? We can post revision suggestions below. My wiki editing skills aren't good. If we could work as a team, maybe we could get it done more quickly and easily.
     

    Attached Files:

    Last edited: Nov 16, 2017
    JD_Lucas, Stretched, soti and 5 others like this.
  2. alkt

    alkt Senior Member

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    their has been a previous post on the wiki pages psych beliefs regarding m.e cfs if you can find them they are not very optimistic as changes are only allowed by persons that wiki feel are qualified in this area what a joke.
     
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  3. E.man

    E.man

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    Limited editing to correct errors ? Is that just on medical pages ? (I fixed a fact about India).
     
  4. gabriella17

    gabriella17 Senior Member

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    I don't think it's limited to people qualified. I've edited pages before, around 10 years ago. The whole point of wikipedia is that it's "wisdom of the crowd". Anyone can edit it, but all edits are subject to being challenged if they're inaccurate or incomplete. But you do have to log in to wikipedia in order to have editing options. Just need to create a user account.
     
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  5. gabriella17

    gabriella17 Senior Member

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    I just went to edit it - working just fine. Here's a screenshot of the editing page I'm on:

    upload_2017-11-16_19-28-28.png
     
  6. E.man

    E.man

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    Ok !
    Let's get onto this as we are able.
    It wouldn't be allowed about any other minority group.
     
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  7. deleder2k

    deleder2k Senior Member

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    The article is very troubling.

    " Evidence suggests that cognitive behavioral therapyand a gradual increase in activity suited to individual capacity can be beneficial in some cases.[5][6] In a systematic review of exercise therapy, no evidence of serious adverse effects was found; however data was insufficient to form a conclusion.["

    Pehaps one can do something about this. Wikipedia likes BMJ Best Practice articles. The new article says that CBT looks to work if the patient is depressed. It should also be noted that CBT does not lead to increase in physical activity. I think we have some meta studies also confirming that. Using a single study as a reference isn't usually enough.


    And with respect to side effects, do we have a meta study, or several studies pointing at side effects seen in CBT/GET?
     
  8. Forbin

    Forbin Senior Member

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    I tried using the internet archive "wayback machine" to look for recent changes. Sometime between 8/25/17 and 9/29/17, the first line of the section on CBT was changed to...
    [ The link [85] is to the CDC ME/CFS website: https://www.cdc.gov/me-cfs/index.html. ]

    Thus giving the impression that the above supersedes the following line:
    The relevant "statement" on the CDC website is:
    I'm not sure that the above CDC "statement" could be considered to be specifically about CBT, yet it has found its way to the top of the section on CBT at Wikipedia's CFS page, where it could only be interpreted that way.
     
  9. Diwi9

    Diwi9 Senior Member

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    One must be daft and not following the medical literature to continue to believe that CBT and exercise can aid this disease. I suspect that most of the information on the internet will change in the next year...or at least hope so. Without a ground-breaking bio-marker, many remain cautious of endorsing a full biological explanation in light of the copious amounts of crap psychological studies. I have faith that the NIH intra-mural study will provided a new authoritative dialogue about this disease, if some of the other researchers don't get there first.
     
  10. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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  11. E.man

    E.man

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  12. alex3619

    alex3619 Senior Member

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    I first blew the whistle on this many years ago. Probably many hundreds of attempts have been made to change it. It is changed back soon after. This page is actively watched and re-edited if changes are made. Now at some point that might change, but until then its impossible to change things.

    My original message was sent out on Co-Cure and was discussed in Magical Medicine.

    This topic has been discussed a few times on PR. To my knowledge nobody has succeeded in fixing the issue.
     
  13. Learner1

    Learner1 Professional Patient

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    I just went and read it. What's on there at the moment is not as bad as I expected, so whoever's been editing it from a patient advocacy view has been doing a good job. It could be better, though.

    The Research section is sadly in need of updating.

    It would be nice to see the research presented at the OMF Symposium included, the work with Rituximab, the work on metabolomics and the microbiome, and the current projects the NIH has approved, along with the other wonderful work that's come out in the past 5 years.
     
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  14. IThinkImTurningJapanese

    IThinkImTurningJapanese Moderator

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    @gabriella17 @Mary I can't find the thread, but IIRC Mary has attempted this before and found the issue that needs to be addressed.

    That is that the CDC has changed their CBT and GET recommendations, but the Mayo clinic hasn't. Wikipedia has refused changes that contradict the Mayo clinic's information, and the Mayo clinic denied @Mary's request to update their webpage until they are scheduled to update.

    If I'm remembering this correctly, we need to focus attention on the Mayo clinic updating their understanding of ME/CFS.
     
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  15. Learner1

    Learner1 Professional Patient

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    Writing to Mayo would be great. I wrote them a couple weeks ago but have not heard back yet.
     
  16. deleder2k

    deleder2k Senior Member

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    Isn't the CDC change and BMJ best practice worth mentioning? At least one should be able to point out that one research has not shown that CBT leads to a increase in physical capacity
     
  17. JES

    JES Senior Member

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    Yeah editing is allowed, you can even do editing without logging in at all, that's not the problem, the problem is it will likely be reverted back later by someone who controls the page. Especially if you add sentences that don't refer to a source they consider credible, that makes it easy for them to remove it later.
     
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  18. garcia

    garcia Aristocrat Extraordinaire

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    It's probably best to take a long-term approach with this. Making sure the science is up to date could perhaps be the first priority as it can all (presumably) be referenced so should be (relatively) non-controversial. The treatment stuff is probably going to be the last thing you are able to change. The initial aim should be to reach critical mass where enough long-term changes have been made (and stuck), and enough people are watching / editing the page that adding more controversial edits should be do-able. Some way to systematize the effort would be good. Ideally organize it in private.
     
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  19. Mary

    Mary Senior Member

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    I didn't know that Wikipedia would not make any changes unless the Mayo Clinic did. That's even more impetus to get Mayo to correct their website.

    I had several exchanges with the Mayo Clinic about their website. It just happened to coincide with their scheduled time for reviewing the website. They did make some changes but nothing really substantive and they are sticking with GET and CBT for the next 3 years. I think one of the problems was the CDC didn't delete CBT and GET until last July, by which time Mayo had already decided what it was going to do. I pointed out to them the CDC changes but they didn't budge. Having said this, I think it's still worthwhile for anyone who wants to to contact them. I think of it as being similar to the FDA withdrawing approval for a certain drug to be used in a certain circumstance - I don't think Mayo would ignore this and say they only review their policies every 3 years. And that's how I see GET, essentially as a dangerous drug for ME/CFS. If anyone wants the names of who I was in contact with, PM me.

    BTW, I had some very good help from @Esther12, @Learner1 and @medfeb during this exchange. :thumbsup:
     
  20. medfeb

    medfeb Senior Member

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    Thanks for tagging me on this, @Mary. Will look at this more closely when I can
     
    Mary likes this.

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