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Help! Daughter's university doing flawed study tying parents perceived illness to students neuroses

Discussion in 'General ME/CFS Discussion' started by BeautifulDay, Oct 5, 2017.

  1. BeautifulDay

    BeautifulDay Senior Member

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    I need help writing a letter to my daughter's psychology teacher and the dean of the school at her university. This poorly written study is clearly written in a way that will find that parents who have unexplained illness are more likely to have their children in college have a higher risk for neuroses and perceived physical illness. Thank goodness my daughter is not a psych major at this school.

    For those who want to express their views on how dumb the study is, how moronic and idiotic or poorly written, etc..... - I am in full agreement and I've set up another thread here ...
    for those comments. http://forums.phoenixrising.me/inde...aughters-university-doing-flawed-study.54839/

    I'd like to explore on this thread the wording of my letter to the teacher and dean in a manner that is politically correct (no using words like dumb, or idiotic, etc....) and provides the scientific study quotes and links to explain the errors in the study. It cannot be a personal attack. I'm a believer in educating the people in psych first time around. If they still don't get it, then coming around in a more direct and more assertive (yet still professional manner) at a later time. Keep in mind that my daughter still has a half semester left in this class.

    Here are the details: My daughter is in a basic Introduction to Psychology class. As part of the class, she completed an hour questionnaire that had questions related to her relationship with each parent, and questions about her thoughts of suicide, etc..... Then I received this e-mail asking me to complete a 15 minute questionnaire that would be compared with my daughter's answers.

    The letter began: "Dear Parent, Your son/daughter has agreed to participate in our research study examining the

    cropped university email regarding study.png

    Yep, there is a lot there already to be worried about. Clicking on the link in the email from the school resulted in this popping up:

    cropped Intro to study.png

    The questions to me (the parent of the college student) within the study included:

    "“Are you worried that you may get a serious illness in the future?”

    “Does the thought of a serious illness scare you?”

    "Has your doctor told you that you have a new illness now?"

    "I have physical sensations that even doctors don’t understand." Answer from completely disagree to completely agree.

    Then there were the various questions about how many times a year do you see a doctor and how many different types of doctors.

    Many of the questions were about my perception of whether I was sick, whether I worried about getting sick, whether I went to a lot of doctors visits with no relief, and how I handle pain (do I go right to a doctor).

    When I finished the questions, up popped this misleading statement:

    cropped debriefing when study completed.png

    Had I answered these questions a year ago prior to our recent diagnosis of Mitochondrial Disease due to genetic mutation then my answers would have looked like someone who had a diagnoses of Chronic Fatigue and had been on the decades of Medical Mystery Carousel where doctors were telling me to reduce stress, get more sleep and that I should try SSRI's. The finding of comparing my daughter and my answers back then would have likely led to the finding in the study that my neurotic attempts to prove that I was sick led to my daughter feeling she was sick.

    Now we know my Chronic Fatigue, gastroparesis, intermittent foot drop, low pulse pressure, hypoglycemia, aminoaciduria, cognitive memory issues, and
    my college daughter's chronic fatigue, toe walking, POTS, high AST (Aspartate transaminase), vocal cord and diaphragm partial paresis and anxiety, and
    my high school son's autistic spectrum disorder and hearing loss, and our
    8 year old daughter's intermittent foot drop, chiari malformation, and high AST (Aspartate transaminase)
    are all related to this genetic mutation.

    However, for most people with CFS who have not yet found their smoking gun (for us the Mitochondrial Mutation), this study will make it look like a parent with CFS who has a child in college will have more psychological issues, more neuroses, and more illness due to the influence of a neurotic parent in his/her life. Rather than the truth that a parent who is ill and has passed a gene(s) onto a child in school may result in that child also being ill.

    Please help me find the right words and scientific quotes and links to educate these psychology professionals who are teaching young minds and shaping the future of the industry. Such studies must stop!

    Thanks in advance for any help you can give me!
     
    Last edited: Oct 5, 2017
  2. Wonko

    Wonko Senior Member

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    The other side.
    They can only continue if people cooperate with them.

    I would ask you, you have ME/CFS and other things, do you also have a perceived illness? If not then this study shouldn't include you as it's for people with perceived illnesses.

    Maybe not what you wanted but it seems pretty cut and dried to me.

    edit - I was in the process of doing a more detailed version of why my position is as it is, but it got lost so......a short summary of what I can remember of it.

    These people are not scientists, these people only believe in their own "science" and anything that doesn't further that will be rejected. You cannot educate people who don't wish to be educated by you.

    There are are already far too many of these sorts of studies, which are grouped together in order to support each other and themselves, with no actual validity other than that, say, 87%, of other papers agree with us.

    Please do not help them to increase this percentage. They are not trying to help you, or anyone else, they are trying to damage us.
     
    Last edited: Oct 5, 2017
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  3. BeautifulDay

    BeautifulDay Senior Member

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    Good morning, I agree not participating is one avenue. The researchers are tying a parents participation in this study to their child receiving more credit. In addition, they are asking all parents of students to participate (not just those who have a perceived illness). Therefore, the population they are starting with is all (not just perceived illness). Third, if I just chose not to participate, I'd lose my chance to educate these educators.
     
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  4. Chrisb

    Chrisb Senior Member

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    Was it made clear what the study was? It looks as though it might be for a third year student's dissertation, prepared with the help of a supervisor.

    The reaction to the questions, and the nature of the response, is probably dependent to some extent on the purpose of the questions and the uses to which answers will be put.
     
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  5. andyguitar

    andyguitar Senior Member

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    Stay away from it! Don't engage with them and their stupid money and time wasting study.
     
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  6. Wonko

    Wonko Senior Member

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    The other side.
    It's for an introduction to psychology course, 1 st year, and parents are being blackmailed by it saying it will count for 10% of their child's grade. Cheap underhand way of getting a bogus paper for someone in the psychology dept.
     
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  7. BeautifulDay

    BeautifulDay Senior Member

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    It was not made clear. It could be just what you said, a third year student's dissertation prepared with the help of a supervisor. My concern is that if this is the case, then it is still a reflection of what this student was taught at the university and it will continue the misconception if they are not educated on the studies that are often cited here on PR.
     
  8. Esther12

    Esther12 Senior Member

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    I've not looked at the details of this, but that stood out to me as problematic. I can't imagine that my parents would have put up with being written to like that.

    "There is absolutely no obligation for you".... assuming you don't mind depriving your child of half a credit they've already done an hours work for. It could be worth e-mailing them to clarify that this is what they're saying?
     
  9. Hutan

    Hutan Senior Member

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    The ethics of this approach, where something that the parent does or does not do has a direct impact on the child's grade, is one major concern.

    And earlier, students would have felt compelled to answer their own questionnaires in order to not to have their grade affected.

    Was there anything saying this study has been reviewed and approved by an Ethics committee? It could be useful to find out if the university has a written code of research ethics or something along those lines that you could check compliance against.

    ETA - cross-posted with Esther12
     
  10. BeautifulDay

    BeautifulDay Senior Member

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    I originally was going to argue several points in my letter, including the fact that the Institutional Review Board (IRB) regulations require that in order for no coercive activity to be involved in the research that an alternative non-research extra credit activity must be offered that must be comparable in time/commitment as the research activities.

    IRB (45 CFR 46.116(a)(8)).
    https://www.hhs.gov/ohrp/regulations-and-policy/regulations/45-cfr-46/index.html#46.116

    While the University’s website clearly states that this is the fact with regards to psychology research, my daughter was not told that she had a right to do an alternative to earn the credit. In addition, there was no mention of the alternative in the information provided to the parents who were also coerced into participating in the study.

    Purdue (not my daughter’s University) explains their position on the IRB policy as:

    “EXTRA CREDIT AS COMPENSATION
    Extra course credit may be used as a means of compensation for participation as a research subject under certain conditions as listed below.

    a. Any extra credit can be no more than 3% of the course grade.

    b. In classes taught by graduate students, adjunct faculty or lecturers, the supervising faculty member, in concert with the teaching assistant or instructor, must approve this option for the course. In classes where there is no supervising faculty member, the department head, in concert with the instructor, must approve this option for the course. A memo stating the approval should be submitted with the IRB application.

    c. Extra credit options must always include an opportunity to earn the same amount of extra credit in a way that is comparable in time and effort with participation in the study.

    d. A procedure must be developed to ensure the extra credit is awarded after the regular course grades have been computed.

    e. The amount of extra credit should not result in undue influence.

    https://www.irb.purdue.edu/docs/203_compensation.pdf


    I worry that while the research in the study is already flawed because both students and parents are coerced into participating, that by arguing that issue that the bigger issue of educating them on Chronic Fatigue Syndrome and it being a real physical illness (not mentally caused by thoughts) and that it can be passed down through our genes to our children – that that point might get lost if I argue too many points in my letter.

    Do you believe I should bring the issue of the university not following IRB regulations as being coercive up in my letter or just concentrate on educating them about Chronic Fatigue and how this study will be flawed by not taking it into consideration?
     
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  11. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    In the UK I am fairly sure this is straightforward illegal. It is illegal to recruit anyone to a study if they are in any way dependent on anything that might be provided by a senior member of staff - such as further employment etc. Rules were introduced specifically to protect junior staff but I think also students in medical departments.

    Credits for a student cannot possibly be dependent on the actions of a parent. If it is not illegal where you are it should be. And I suspect it is illegal in terms of general law even if there is no specific law relating to student recruitment.

    This is about the most intrusive example one could think of. Moreover, damage is implicit in the study. If the study is based on the premise that the attitudes of others close to one affect one's health then presumably this study could affect the health of students.

    If it were me I think I would straight out ask the department if they think are sure that what they are doing is legal because a senior medical academic in London is pretty sure it is not.
     
  12. TigerLilea

    TigerLilea Senior Member

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    @BeautifulDay Just as a matter of curiosity, is this university in the UK?
     
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  13. BeautifulDay

    BeautifulDay Senior Member

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    Great question. It's a University in the United States.
     
  14. TigerLilea

    TigerLilea Senior Member

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    I'm surprised as this sounds more like something that would come from the UK, not the US.
     
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  15. greeneagledown

    greeneagledown Senior Member

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    “Does the thought of a serious illness scare you?”

    You'd have to be pretty freaking stupid to NOT be scared at the thought of a serious illness... I guess psychologically "normal" people are supposed to say "oh serious illness is totally fine"
     
  16. BeautifulDay

    BeautifulDay Senior Member

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    I wish it was surprising to me. Researchers who don’t follow the rules regarding ethics, and who use flawed science and theories can be found anywhere. It’s a matter of calling them on it and educating the ones that have no idea.

    I look forward to the day when all doctors are taught that Chronic Fatigue Sydrome is a real physical ailment. Chronic Fatigue sufferers are not hypocondriacs and we are not lazy and when our children show symptoms I wish doctors would first look to the physical before determining that we made our kids neurotic.
     
  17. Snowdrop

    Snowdrop Rebel without a biscuit

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    I think part of the problem is in thinking that a third year undergrad paper is worth anything in terms of contribution to research. What's that all about. I find that a lot of PhD theses are not worth bothering over in terms of contribution to science --why would this paper matter at all. In not sure but I think only in psychology is there such a thingas undergrad theses--it's complete nonsense.
     
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  18. greeneagledown

    greeneagledown Senior Member

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    Lots of psychologists all over the world are nuts about this stuff, including in the US. They simply have less influence in the CFS research community in the US than in Europe. They're still nuts, just less powerful.
     
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  19. BeautifulDay

    BeautifulDay Senior Member

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    To me it's not that this paper is going to end up in any big medical journal. It surely won't. It's what it represents in other costs. Thousands of students go through this Psych class a year. This research project is fully representative of what this professor believes. My daughter has students in her class who are going on to become psychologists, social workers, therapists, and others in the Pre-med program. This professor's beliefs are going to influence how they treat and interact with people like us in the future.
     
  20. Snowdrop

    Snowdrop Rebel without a biscuit

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    Good point.
     

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