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Child/Adolescent Siblings of ME/CFS - Participants needed UK

Discussion in 'Active Clinical Studies' started by katriona Taylor, Jul 20, 2012.

  1. katriona Taylor

    katriona Taylor

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    I'm not too sure if I've chosen the right section to post this under as I know it's not medical research but it is a current study looking for recruitment!

    If anyone knows of any good places where I could post this participation advertisement that would also be extremely appreciated!

    I would also like to note that I am not disputing the medical causes of ME/CFS. This research is to find out about the effects on siblings. There is little research which has focussed solely on the effects of ME/CFS in separation from other chronic illness which have been looked at in more depth such as paediatric rhumatoid arthritis and cancer to name a few.

    Here is the information about the study:

    I am an MSc Rehabilitation Psychology student at the Institute of Work, Health and Organisation at the University of Nottingham conducting research to find out about the effects of paediatric CFS on their well-siblings. I'm really struggling to find participants and I think this is a really worthwhile peice of research so please help out if you can! I cannot express how much would appreciate it!
    To do this, I need siblings of CFS/ME sufferers to fill in a number of questionnaire measures about their quality of life and emotional well-being, as well as collecting parent reports from the primary care giver.
    I am also looking to recruit participants for a telephone/internet interview phase to get more detailed information from the siblings about their perceptions of their siblings illness and its impacts.
    Participants must fit the following criteria:
    • The well-sibling and ME/CFS child must be aged between 8-17 years old
    • Their sibling must:
    o Cohabit with the well-sibling
    o Have a medical diagnosis of ME/CFS
    o With symptoms for a minimum of 6 months
    • No other chronic illness not relating to their ME/CFS
    • Immediate family other than the ME/CFS child should not have suffered from an chronic illness within the past 5 years
    This study has great potential for publication as there's little previous research, and it is a crucial part of my Master’s degree, so any participation possible is extremely appreciated!
    For those who are willing to help out with the questionnaire measures you can follow the links below:
    The Parent Questionnaire:
    The Sibling Questionnaire: (this has information for you to read at the start before handing over to your child)
    I can also send out paper versions if that would be preferable.
    If you are interested in participation in the questionnaires and/or interview phase then please contact me on lpxket@nottingham.ac.uk for more information.
    THANK YOU!
     
  2. busybee

    busybee Senior Member

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    Hi katriona
    I think you need to find out more about the history and politics involved in ME/CFS first and suggest you remove your phone number and email address.

    "......Rehabilitation Psychologist at the Institute of Work, Health and Organisation"

    Of course you could also be a troll.
     
    redrachel76 and Tito like this.
  3. user9876

    user9876 Senior Member

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    I think you may find quite a lot of children with ME also have siblings or parents with similar problems.
     
  4. Tito

    Tito Senior Member

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    Katriona,
    What is the purpose of that study?
     
    Enid likes this.
  5. Esther12

    Esther12 Senior Member

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    I'm genuinely interested to know what benefit this research has brought families whose children have cancer, arthritis, etc. What likely benefit could this research bring to those with CFS and their families?
     
    Tito likes this.
  6. HowToEscape?

    HowToEscape? Senior Member

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    Huh?

    Pediatric CFS? What ages?

    "This study has great potential for publication as there's little previous research"

    So, you have no publications previously but are sure you've hit upon the biggest greatest thing in a field which the best scientists struggle with while quacks, denialists and people with a private agenda proliferate?

    Might be best to establish a clinical practice treating this disease before running a study.

    Nothing personal, just a word.
     
    redrachel76 and Tito like this.
  7. Aquila

    Aquila

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    If you want to find people of that age you should contact ayme it has large membership of people with me of that age it also has a large closed forum.
     
  8. katriona Taylor

    katriona Taylor

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    Hi, basically the purpose of this study to to find out about how children adapt to their siblings illness. The reason I am interested in CFS is because I am aware of the factors which surround the illness, with ambiguity and medical disagreement over it's causes, which is less apparant in some other chronic illnesses. (I have personal experience of CFS within the family environment).

    The "quacks, denialists and people with a private agenda proliferate" is what makes CFS important to study due to confusion and frustration that this may cause not only the sufferer but also their family.

    It may be that siblings may not be negatively impacted by the illness, it could infact be that it could have some positive effects on some individuals. No research has been specifically aimed at ME/CFS. However, if it is found that there are negative effects on psychological adjustment (their response to a difficult life situation) then it is important that there is an evidence-base in which the development of support systems can be established for those that may need it.

    I'm still struggling to find participants, and I have also gone through the AYME who are helping me to advertise the study. I know that it may be slightly time consuming but I really would appreciate any responses possible. Even if only one of the questionnaires is completed (parent or sibling) although both is optimum, or if anyone would be happy for their child to partake in the phone/internet interview phase.

    I hope I've explained that OK, I can't go into masses of detail prior to the study being completed as I don't want to bias the results. But if anyone has any more questions please feel free to contact me.

    Thanks,
    Katriona Taylor
     
  9. redrachel76

    redrachel76 Senior Member

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    To be honest I'm disgusted that any psycological studies are being made.
    AYME has gone right down in my opinion for collarborating with any psycological research while there is next to nothing done on finding a proper physical treatment. I have trouble walking more than 50 metres and digesting food and yet they have money to fund stuff like this.
     
    Tito likes this.
  10. Tito

    Tito Senior Member

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    Katriona,
    You haven't replied Esther's question:
    Could you please help us to understand the benefits experienced by the siblings of cancer patients for example? Here people tend to be very pragmatic, so don't be afraid to be down-to-earth.
    Thanks
     
    redrachel76 likes this.
  11. user9876

    user9876 Senior Member

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    This is someones MSc project looking at how having one child with ME in the family affects other children. Its not some big psychological study.I assume it is basically not funded (survey monkey is cheap). From the sounds of it a similar questionaire has gone out to families with other chronic conditions. I suspect one conclusion would be how little support children with ME and their families get. I would actually go much further and suggest that doctors, social workers and teachers are often quite disruptive.

    I see an issue with any outcomes in that many families with a child with ME have learned it is best to stay away from various forms of support (doctors and social workers). I think many have had bad experiences and no help.

    You could try the tymes trust
     
  12. katriona Taylor

    katriona Taylor

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    As User 9876 said this is a piece of MSc research. We are not funded in anyway by anybody. I have no financial backing from my University or from any charity. I am therefore, very limited in what I can actually research as part of my project.

    I am not trying to state that the physical causes and symptoms of CFS don't exist. I am a full believer that the illness is not one of psychological origin. I am wanting to find out the effects on young siblings and their families, not the CFS sufferer themselves, as literature so far has failed to take them into account.
     
  13. Tito

    Tito Senior Member

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    Katriona?
     
  14. Enid

    Enid Senior Member

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    No siblings involved here nor friends with ME - now what does that mean.
     
  15. Aquila

    Aquila

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    Good luck it seems like your getting a bit of a hard time but any research to help caring for people with ME and the people around them is useful. I know siblings of people who have had M.E. severly who have had found it very hard to cope and I also know siblings who made their siblings life who has M.E. absolute hell. If this studies helps this not happening that would be great! However I don't think they are many teans on this site as far as I can tell.
     
  16. PhoenixDown

    PhoenixDown Senior Member

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    Which criteria of CFS are you using?
     

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