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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Doing Research in Chronic Fatigue Syndrome with Chronic Fatigue Syndrome – Dr. Keith Geraghty

Discussion in 'General ME/CFS Discussion' started by Tom Kindlon, May 5, 2016.

  1. Tom Kindlon

    Tom Kindlon Senior Member

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    Valentijn, aaron_c, Ritto and 20 others like this.
  2. Yogi

    Yogi Senior Member

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    I had seen some of his tweets and thought he might have some personal interest in CFS as he is very knowledgeable about the subject. It's good to hear he is better and not turning his back on ME/CFS. Excited and looking forward to seeing his future publications!!
     
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  3. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    It`s mindboggling to me that some researchers stay away from ME/CFS, purely due to published work getting proper scrutiny. Every researcher with the right mind-set, should almost love getting put under serious review. That`s science - you search for the truth, not glory. Although the two can be combined.
     
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  4. JaimeS

    JaimeS Senior Member

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    Agreed! I think it would force you to be extra-cautious with what you put out there and make you a better scientist.

    However, funding is notoriously hard to come by, and our community can be... aggressive. Not to say that they shouldn't be in many cases -- we are worth fighting for! -- but to point out that there are a lot of illnesses scientists can study where patients will 'make less trouble' for them.

    At this point, I think you have to have a real emotional stake in the outcome to want to study ME: a friend, a family member, or the researcher him/herself must have ME. That, or you're willing to fight an uphill battle for glory: to be the first to identify the etiology or discover a cure.

    -J
     
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  5. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Yeah you might be right, at least those reseachers account for a good percentage.

    Thing is, i`m not hearing many complaints on good biologicalresearch, so if we scare off some psychologists.. Awesome riddance!

    That being said, I do remember Fluge & Mella pointed out that colleauges warned them about entering the ME/CFS-field. But I strongly believe that the real reason for these warnings have got more to do with the psychies being extremely vocal about real research, because we are being extremely supportive about great research.
     
  6. JaimeS

    JaimeS Senior Member

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    It's the ones in the middle that are getting kicked out of proportion. We've got the crappy psych papers that need to be torn into their tiny, illogical components; then we've got the Columbia and Stanford people, whose research shines with the light of a thousand suns.

    Then we've got the tiny studies that are trying to be like, "look... maybe yes?" which is what all tiny studies do, and we are kind of like, "IRRELEVANT. SMALL STUDY. THEY USED THE WRONG X."

    [​IMG]

    It's not like that isn't true, but other research is just plain not subjected to this level of scrutiny. Though it sure should be! Still, that probably chases some people off. They worry that their research will be attacked.

    But, like, the more I say this, the more I think we don't need the kind of researcher who would be put off by this. So long as we don't attack their character.

    -J
     
  7. Justin30

    Justin30 Senior Member

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    I find your statement to bear some truth for sure....

    I think the reason its not studied is because the money isn't there for ME/CFS Research.

    To add to the mess the CDC can't and has never gotten their facts straight...
     
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  8. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Haha that picure does paint a picture..

    I believe you to be right about that, and it simply has to do with the patient group being really disabled, without any interventions available. We don`t have time for dilly dallying around, we got lives we wan`t to live.

    When Fluge & Mella got criticised way out of proportion by a handful of people, did they complain or cry to mummy? Nah! They answered all of it: Yes, the sample size is too small. No, we can`t conclude this is a effective treatment yet. No, the endpoint was not met. No, we don`t know enough about side effects for Rituximab. No, this does not prove ME is autoimmune. They embraced the criticism, and let it shape their next study.

    I`m sure they would get more funding if they werent so honest and thruthful to the scientific method and approach.
    Imagine the PACE-authors meeting criticism that way.

    There are real scientists out there, but they have only recently been investigating ME/CFS.
     
    Last edited: May 6, 2016
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  9. JaimeS

    JaimeS Senior Member

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    It takes a really flexible ego. It's so hard to admit flaws in one's research, especially if they belong to the group that's researching for glory. ;)

    -J
     
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