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Research on Families of Children with ME/CFS

Discussion in 'Other Health News and Research' started by ArgieM, Aug 10, 2016.

  1. ArgieM

    ArgieM

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    INVITATION TO PARTICIPATE IN RESEARCH

    If you are the parent of a child or teenager with ME/CFS, you are invited to participate in a study of the effects of children’s illness on the family. I am a psychology professor at Stetson University and I have a very personal reason for doing this research—I have two children with ME/CFS. My wife and I know firsthand that being the parent of a child disabled by ME/CFS can be stressful, not only because of the pervasive devastation of the disease itself but also because it can be so difficult to find good medical care.

    The purpose of my study is to see how symptom severity and degree of disability in children with ME/CFS and parents’ access to medical care are related to the amount of stress parents experience. The ultimate goal is to find ways to help parents cope with their children’s illness (rather than blaming them for it, as some researchers do!).

    The study is open only to parents who live in the US and have a child under 18 years old who has been diagnosed with ME/CFS. The research has been approved by Stetson University’s Institutional Review Board, which evaluates research to ensure that the procedures are safe and ethical. Parents will provide information about their children, but children themselves will not participate.

    Those who choose to participate will complete a brief online survey that includes measures of children's symptoms, access to and satisfaction with health care, stress, and demographic information. Then I will send them the Child Behavior Checklist, the Parenting Stress Index, and the World Health Organization Disability Assessment Scale by regular mail. A pre-addressed, postage-paid envelope will be included for parents to return the completed materials. Participants’ names, addresses, and data will be kept secure and confidential. All participants will receive a summary of the results when the study is complete.

    To find out more or to participate in this study, please go to THIS LINK.

    Thank you!

    Rick Medlin, Ph.D.
    Professor of Psychology
    Stetson University
    DeLand, FL
     
    Last edited: Aug 10, 2016
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  2. Hutan

    Hutan Senior Member

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    I'm sorry your family is having to cope with ME. And clearly you are aiming to help ME patients.

    But I am a bit concerned that the findings of any study that involves the words 'psychology', 'children with ME/CFS' and 'stressed parents' can be twisted to end up blaming the parents, Perhaps not by you but perhaps by others who are convinced that the association between parental stress and illness of a child is actually a causal one with the parental stress causing/maintaining the child's illness.

    What will you be doing to minimise the risk of the study actually causing harm?

    It's great that you are wanting to use your skills to make things better for people with ME and their families. I wonder if there are other ways that you could do this in the future that don't focus on parental stress?

    For example, what are the circumstances and personality attributes that would make a doctor more likely to apply a psychosomatic diagnosis to a child? Perhaps if you did a study like that with medical students then your work would have the additional benefit of educating future doctors about biased thinking.
     
  3. PennyIA

    PennyIA Senior Member

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    Agree that I'm nervous about participating in any study about psychology and ME/CFS. Way too many funds are mis-directed from researching biomarkers and treatments into studies that call out ME/CFS. Wouldn't the natural result of an ill child being unable to be treated successfully cause stress to the parents? And lack of Medical support exasperates it?

    I know that I myself, being ill with ME/CFS and having a child who exhibits the same symptoms am stopped from trying to get him diagnosed. The patient and parent blaming isn't worth the energy required to pursue the diagnosis.

    And without an effective treatment even if I did get him diagnosed there's only cost and no benefit to the exercise.
     
  4. Kina

    Kina

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    Please note, any personal attacks and rude comments directed at the OP will be removed from this thread. As always, constructive criticism is acceptable.
     
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  5. Hutan

    Hutan Senior Member

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    I don't think we should doubt that the OP does actually have children with ME/CFS or something similar. Anyone who identifies themselves as a psychology professor from a particular university doing a study on ME/CFS is not hiding their identity and so they would be very foolish to claim something as checkable as that their children are sick if that is actually not true.

    So, I have no doubt that this research is being done with the best of intentions and not to just tick off another publication.
    ETA: This was in reply to a post that has since been deleted.
     
    Last edited: Aug 10, 2016
  6. Snowdrop

    Snowdrop Rebel without a biscuit

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    I would imagine that ways of coping for parents of children with ME would be similar to the ways parents of children with other complex/serious illnesses cope. Having support structures whether that be family and friends who listen and help or groups for parents of children with similar illnesses to trade strategies and information in dealing with illness and it's issues.

    What would help parents MOST of all is to lobby for change to the medical establishments attitude to this illness so that a parent may safely take their child to a doctor with the expectation that they will be listened to and believed.

    Parental stress is lessened when there is a viable treatment plan in place. That can't happen for children with ME until the medical community starts taking the illness seriously. That's what Id want for my child and for me as a parent.

    And the other posters have a point--as soon as stress is mentioned it becomes a lightning rod for how doctors view the illness -- it can end badly depending on who you're dealing with.

    In my opinion it might help parents to cope by being proactive by being a champion for the rights of the child to get access to proper treatment.
     
  7. Kina

    Kina

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    Why on earth would this person lie when they have put their full name, and where they work in their post. And by the way, their email address is indicative of telling the truth.

    I am sorry but I have a daughter with a chronic condition and stress has always been a part of it all and yes being helped with dealing with the stress of raising a child with a chronic condition is very important. Often the stress directly results from not being believed, having little or no evidence for treatment modalities. I have championed the rights of my child forever but that isn't an answer. Any kind of help with coping with a chronic illness in a child is welcomed by parents. Why don't y0u all stop shitting all over people trying to help and trying to provide some research answers.
     
  8. Comet

    Comet I'm Not Imaginary

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    Since so many posts have been deleted from this thread, I decided to delete mine too. The above quote is now out of context, but that is my own doing. Suffice it to say that it was not my intention to accuse anyone of lying. My post was about diagnosis and appropriate criteria.
     
  9. ArgieM

    ArgieM

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    Your concerns are exactly why I am doing this study. Let me list a few quotes here from previous "research" on children with ME/CFS:

    “Childhood sexual abuse is a well-documented risk factor for CFS.”

    The fact that mothers of sicker children are more anxious and protective than mothers of children who are not as sick is taken to mean that “maternal distress may be contributing to CFS-like symptoms.”

    “Psychological symptoms and emotional disorders comparable to those seen in children attending psychiatric clinics are an intrinsic part of childhood CFS.”

    The family is blamed for being “over-accepting” of their child’s illness, which means having “an intense preoccupation with symptoms” and being “resistant to attempts at rehabilitation,” that is, CBT and GET. This same author claimed that psychological symptoms in children with CFS are “30 times higher” than in normal children and include such things as “school refusal.”

    It is claimed that youth with CFS have an “enhanced tendency…to believe in the presence of disease in spite of medical evidence and reassurance to the contrary” (by psychiatrists).

    This kind of thing makes me, well, mad first of all, but then it makes me want to do what I can to get the truth out there, too. What I'm hoping to do, in this study and in others to follow, is to debunk some of those myths and offer suggestions for ways that families with a child with ME/CFS can be supported and helped, rather than suspected and blamed.

    And for their sake, since my name is right there on my post, I don't want to give too many details, but I really do have two children with ME/CFS. It's actually even worse than that, but it's a long, sad story, and this is not the place for it.
     
    Last edited: Aug 11, 2016
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  10. Kina

    Kina

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    Prior to you deleting your post, there were two other posts deleted from this thread because one was a rule breach and the other was off-topic. Let's not exaggerate.
     
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  11. Hutan

    Hutan Senior Member

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    @ArgieM, I know that you are aiming to make things better for people with ME and their families by doing this research and I do appreciate that. But I am still not quite getting how this particular research will help. Can you bear with me as I explain my misgivings and then maybe explain a little more?

    You mention the Parental Stress Index. I found this description of it:

    I think it is quite likely that you will find that families with children with ME are more dysfunctional than families with healthy children. Often a parent has had to give up work so they may feel isolated and there may be resulting financial difficulties. The child may be struggling to assert their independence while having to be very reliant on parents for daily care and being unable to leave the house. And/or the relationship between parent and child may be very tight because they are in a situation of 'us against the world'.

    Presumably there have been some studies of parental stress and family dysfunction in families with children with other chronic conditions that will provide a better comparison than families with healthy children. But I suspect that you may find that the level of stress in families with children with ME may be even greater than in those families. For example, with ME, some of the nuclear or extended family may not believe the child is physically ill and this may disrupt relationships. It may be impossible to find a supportive doctor.

    So, if your finding is that parents with children with ME are more stressed and there is a higher incidence of family dysfunction than in families with children with other chronic conditions, where does that leave us?

    Does it not leave us open to the suggestion that bad parenting has somehow created fertile ground for the illness? How can you pick apart what the families were like before the illness struck and in the early stages of a triggering illness from the questions you will be asking in order to evaluate that accusation?

    Also, the fact that people are self-selecting to take part in the research and are filling out questionnaires on their own is a problem. If the families end up sounding fairly normal and coping well, it will be possible for the people who favour ideas such as child sex abuse being a cause of ME to say ' ah well, perhaps people weren't telling the truth, they wanted to look good'.

    And the self-selection is likely to result in your respondents being more educated, having more resources, being more politically aware and more likely to be assertive with doctors - not a representative sample of the parents with children with ME.

    I can't yet see how the study will come up with unassailable data that will help us. And with this illness, if the findings aren't unassailable, there will be plenty of people to, well, assail or dismiss or distort.

    (Edited to add - if you wanted to address the sex abuse history thing, would it not be better to use as a sample adults diagnosed as having ME by a reputable physician who knows how to identify ME? But actually I think studies like that have been done and the idea of childhood trauma as a predisposing factor for ME has been disproven. And yet it still gets trotted out. So, even good studies of family dynamics won't stop the parent blaming until the illness is better understood.)
     
    Last edited: Aug 11, 2016
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  12. GreyOwl

    GreyOwl Dx: strong belief system, avoidance, hypervigilant

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  13. Valentijn

    Valentijn Senior Member

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    Agreed. And in the process of cyber-stalking him, reviews from his students mention a lot of illness-related absences for him. So I totally believe there are some medical problems in the family. And most of his students say he's very nice :jaw-drop:

    I'm more annoyed by the researchers who claim to have had ME for a few months, but are now cured by it, and have no idea what the symptoms of ME entail, nor why their exercise trials have a pointless methodology. Especially the ones who were logging online regarding a lot of long walks and runs during their "illness" :p

    Based on his past research (mostly in home-schooling), there's really not even a whiff of blaming the study subjects or their parents for anything. And when correlations are found which psychobabblers would like to use to play the blame game, he's explicitly pointing out the flaws with those conclusions. It also appears that he's never published anything suggestive of psychosomatic beliefs. So I'm pretty confident there won't be any twisting of the results.

    The child behavioral questionnaire isn't the best, in my opinion, but I'm fairly confident that the researcher won't abuse it. There's a heavy emphasis on abnormal behavior, and even a section for physical symptoms without a medical diagnosis (presumably psychosomatic), but it also takes illness into account. And the other sections are directly relevant.
     
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  14. ArgieM

    ArgieM

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    Previous research HAS found that parents of children with ME/CFS and the children themselves show more psychological "symptoms" than families of children with other chronic diseases. Some take this to mean that ME/CFS is all or partly a psychiatric disorder. Let me make my position on that issue very clear--ME/CFS IS A PHYSICAL DISEASE, period. So what's going on? No one (as far as I know) thinks cystic fibrosis, childhood rheumatoid arthritis, or juvenile diabetes, for example, are psychological in origin. As terrible as these diseases can be, they are understood and accepted by the medical community and there are treatments available. Parents are more likely to receive support and compassion, I expect, than blame and suspicion. So the psychological impact of these illnesses on the family is less than for ME/CFS, a disease that is not viewed in the same way and for which effective treatments are still elusive. And in many cases, at least, ME/CFS is more debilitating than some other childhood diseases. Instead of assuming the direction of causation is "psychological symptoms lead to ME/CFS" as some do, I believe (actually I know...I have lived this for 16 years now) it's the other way around.

    In this study, I hope to (begin to) show that the psychological impact on the family depends on the degree of the child's disability and the parent's access to satisfactory medical care. In later studies I'll compare families with a child with ME/CFS to families with children with other chronic diseases to take it to that next step--that degree of disability and access to satisfactory medical care are generally worse for families with a child with ME/CFS compared to other illnesses. The obvious implication of the research would be that parents need better access to satisfactory medical care, and that ME/CFS needs to be given the same kind of attention by the medical community and the government as other, well-known, severe medical conditions.

    As Hutan notes, the Child Behavior Checklist and the Parenting Stress Index do measure (among other things) "abnormal" behavior. I am using these tests in part because they are well-known and widely accepted measures in my field, so any conclusions I make cannot be discounted based on the tests I use. I am also using them because they have been included in earlier research, and I want to be able to correct what I believe are misleading conclusions those studies have made. For example, previous research has often stated that children with ME/CFS have higher depression scores than children with other illnesses. But would that still be true if the items on the test that purport to measure depression but are actually measuring specific symptoms of ME/CFS like "fatigue" "sleep problems" and "aches and pains" were removed?

    The self-selection problem is a limitation those who do research like this just have to live with...we can't make people participate in our research. Members of PR who are interested enough in research to be reading this post are already a select group. Those of you who choose to participate even more so.

    But yikes, that's enough for now! Thank you for your interest in this study! Take care.
     
    Last edited: Aug 11, 2016
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  15. user9876

    user9876 Senior Member

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    In the UK its not just blame and suspicion. Child protection action is not that unusual (or threats of it to try to enforce treatment). Dealing with the authorities and trying to manage them can be extremely traumatic.
     
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  16. Groggy Doggy

    Groggy Doggy Senior Member

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    How about starting a new thread with this topic?
     
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  17. Hutan

    Hutan Senior Member

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    @ArgieM, clearly you are aware of the risks and will be trying to reduce them.

    Yes, that's exactly the sort of clear thinking that is needed to interpret the results. With the blunt tool of a questionnaire (and even with what should be the more nuanced view from an interview with a psychologist), a child who rarely leaves the house, feels sick often, is unable to do many of the things they used to enjoy, is told by people in authority that they just need to get out of bed more and sometimes feels a bit down about their circumstances could easily rate as depressed.

    Separating out the impacts of the illness and possible secondary depression from a primary depression disorder won't be easy though. And so you just end up with alternative interpretations of ambiguous data.

    I still think there are easier, clearer wins for us in psychological research in exploring the attraction of medical professionals to psychosomatic diagnoses and parent blaming.

    But, all power to you. Good luck. (I live overseas, otherwise, I would sign up to participate).
     
    Last edited: Aug 11, 2016
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  18. Hutan

    Hutan Senior Member

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    By the way, welcome to PR. I hope you (and your family) will contribute to the threads here; it would be great to read your analyses of some of the psychological research on ME that gets published. And I look forward to hearing how your research goes.
     
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  19. ArgieM

    ArgieM

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    Thank you, Hutan. My wife is much more of a forum person than I am--don't laugh, but this is my first one. (I'm not a total technophobe--I use my laptop everyday--but I am one of those guys who thinks the coolest feature on his smart phone is the flashlight.) My son is already a PR member but hasn't posted for a long time.

    Other than posting on this forum, is there any way I can spread the word to PR members that the study is available?

    I am in the process reviewing all the research I can find on children and teens with ME/CFS. I would be happy to share some of that on PR. But honestly, a lot of it is SO bad it's just going to make everybody (including me!) mad. I'm not sure that would be helpful or appreciated.
     
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  20. ArgieM

    ArgieM

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    Some of the worst research I've run across is by a small group of psychiatrists in the UK. They are the source of some of those outrageous quotes in my earlier post.
     
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