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Psychologists using forum posts for research papers promoting psych theories of ME

Discussion in 'General ME/CFS News' started by Countrygirl, Jan 31, 2018.

  1. Countrygirl

    Countrygirl Senior Member

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    The document is a doctoral thesis by a prospective clinical psychologist from the University of Exeter who has investigated the interactions of online ME forums.

    She seems particularly keen to find material to enable the promotion of psychological therapies and notes that people are prepared to acknowledge psychological factors when discussing the illness amongst themselves when there is no (or so they think :() researcher or doctor evesdropping on their conversaton.

    While I am aware that many of our threads are public I prefer to think that non-members who read our posts are other sufferers who can benefit from reading our contributions. I can't say I am happy with the thought that researchers of the BPS viewpoint are copying and misapplying our material. I trust that this will not be permitted here, although I am not sure if permission has to be granted.

    The relevant material is from page 50 onwards.

    https://ore.exeter.ac.uk/repository/bitstream/handle/10871/16296/KennedyA.pdf?sequence=1&isAllowed=y

     
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  2. keenly

    keenly Senior Member

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    Ignore this irrelevance.

    Do not let cretins occupy space in your mind. Other studies have, and will prove her wrong.

    God bless.
     
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  3. Tally

    Tally Senior Member

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    Any researcher who uses online forums as a source should be laughed out of the room (unfortunately far more ridiculous things have already been done in BPS research and it's still taken seriously).

    This is not a forum made up of people with ME/CFS, this is a forum made up of anyone with an internet connection. Even the said researcher can pose as a patient and write anything.

    I'm fairly sure most of us are patients and only a small number of people have stumbled upon here or are maliciously posing as patients, but "I'm fairly sure" has no part in serious science.

    I would be very interested to see how they explain which ME/CFS definition they used to diagnose forum members :rofl:

    Still it's a good reminder that everything we write here can be read by anyone.
     
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  4. Pink

    Pink Senior Member

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    If someone is here for research purposes, I think they need to let people know.
    I would not appreciate my posts or info being used by anyone.
     
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  5. Countrygirl

    Countrygirl Senior Member

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    No, I agree!

    I hope they would have the courtesy to ask permission and I hope sincerely that it wouldn;t be granted.
     
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  6. Countrygirl

    Countrygirl Senior Member

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    I think we need to form teams to man our ramparts with stun guns.Blat the blighters before they grab our posts for their nefarious ends. Any volunteers? :D
     
  7. Pink

    Pink Senior Member

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    i have heard of this happening on other forums too, I guess it's a widespread issue.
     
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  8. Runner5

    Runner5 Senior Member

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    Grrrrr :( !!!!!! :ill: :bang-head: :bang-head:
     
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  9. boombachi

    boombachi Senior Member

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    The author said that a statement about the research was placed on the forum and regularly pinged to the top. Some people refused consent to include their posts.

    I appreciate the ethics of this but the tone of the paper is patronising and insulting. The whole point seems to be how can psychological therapies be sold to people who believe people with a mental health condition are in a social class below them.

    I am not aware of any evidence that pwme believe this. Perhaps this researcher should aquaint herself with the resons why pwme reject psychological therapies before investing so much time making an argument that is completely beside the point.
     
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  10. Kenny Banya

    Kenny Banya Senior Member

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    You might like to know that a Clinical Psych doctorate is not the same rigour as a PhD (putting aside the quack field that psychology is)
    Many just do the thesis to get the title of ‘Dr’ when they couldn’t care less for research
     
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  11. matt321

    matt321

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    A couple of well known things to consider.

    -Looking at only what can be easily observed instead of what is easily believed has been a powerful and successful approach to the most successful people in our history.

    -People create an interpretation of their own reality that fits their circumstances. They will defend this position. The closer we get to the edge of someones view of their reality, the more they will attack to defend their position.


    This researcher has quantified what most clinicians (including your favorite NY CFS Docs) believe to be the largest hurdle in moving someone through chronic illness. They correctly observed what is actually happening. Those of us who have recovered all had to develop an awareness of what the reality was, not what we wanted it be.

    Looking at myself, I struggled in this regard until I said. F it. Im going to find mentors that will show me what I want to know. Im going to be honest with myself. Im going to lay it all out for judgement...so that I can learn. So that I can improve.

    m sure everyone is aware that this is from 2014.
     
    Last edited by a moderator: Jan 31, 2018
  12. Sushi

    Sushi Moderation Resource Albuquerque

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    I remember this study being discussed here before but the details are hazy (Hazy is us!). If anyone has time to do a search, you may find something as the study rings a bell.
    Here is what is written on our opening page (if you are not logged in):
    If we see anyone claiming to be doing research posting on the forum, we remove their post, contact them, ask them for explicit details (which they usually do not give--so they go away), and let them know that even if their project is approved to be posted on the forum (it has only rarely been--for instance Dr. Leonard Jason, DePaul University), that they must provide all their details--contact information, exact purpose, university, supervisor, how it will be used, where published etc. to the forum members.

    Also, our posts are copyrighted and cannot be legally copied and posted elsewhere without written permission from the poster and the forum.
    Absolutely! Of course we can't prove that a person is who they say they are and there may be members here who are disguising their identities. So, even in Members' Only sections, be cautious about what you post. Google won't pick it up, but a member here for the wrong reasons might.
     
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  13. Sushi

    Sushi Moderation Resource Albuquerque

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    "Well known"? By whom? That is not an adequate citation.
     
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  14. kangaSue

    kangaSue Senior Member

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    Ahh, Psychology ayy, the only medical profession where personal interpretation is acceptable in the forming of a diagnosis.
    Talk to any "real" doctor, they all say the same thing about information gleaned by patients from forums. We are all just anecdotes whose individual opinions, symptoms or benefits gained don't matter as they don't apply to any other case.
     
  15. pibee

    pibee Senior Member

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    Research psychologists do this for many illnesses, like cancer etc. Try not read too much into it. I know, it's hard.
    Don't take it seriously, it will never impact medicine.

    Also, in research they not so rarely use forum posts in general.

    Our main problem is biomarker.


    As much as I'm against BPS models, if you look at rituximab Phase III trial, placebo response was at least 18%, should this be investigated ? I guess. In many illnesses not just ME. I dont see personally possible benefit but I could be simply blind to it.
     
  16. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    agreed
     
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  17. Hugo

    Hugo Senior Member

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    Yes its highly unethical to say the least.
     
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  18. Joh

    Joh Inactivist

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    Not sure what you mean with the "largest hurdle" that apparently "most clinicians" know about? Who are "your favorite NY CFS docs"? Nice nod to yuppie flu.

    This is insulting and implies 17 million people, including tube-fed children, don't want to get better because they're not honest with themselves, fear judgement and don't want to learn... from mentors like you.
     
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  19. boombachi

    boombachi Senior Member

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    Also, our posts are copyrighted and cannot be legally copied and posted elsewhere without written permission from the poster and the forum.
    Absolutely!

    Thanks for clarifying the situation @Sushi. Someone obviously thought this through when setting up the forum. I am grateful for that.
     
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  20. E.man

    E.man Senior Member

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    Piss poor 'research '.
     
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