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A Survey to Define the Toll Disbelief Takes on Fibro Patients - You Can Help 2/16/11

Discussion in 'Active Clinical Studies' started by *GG*, Feb 21, 2011.

  1. *GG*

    *GG* senior member

    Concord, NH
    Here is an excellent way FM patients can contribute to much-needed research on the impact of Living with Invalidation of Fibromyalgia.

    Have your fibromyalgia symptoms been invalidated by others, and if so have these attitudes affected your personal outcomes and acceptance of the illness? Caroline Kenny, a psychologist in clinical training at the National University of Ireland, Galway , has launched an international online survey to provide an educational profile of this issue. The goal is to create understanding and communicate more informed approaches for dealing with FM patients among medical professionals, social services, and family & co-workers. Following is her description of the research and a link that will take you to the survey site.


    If you are 18 or older and have been experiencing FM pain, would you like to contribute to research on the impact of living with invalidation of Fibromyalgia?

    Chronic pain associated with Fibromyalgia can be a challenging experience for those who live with it. Because of the invisibility of their symptoms and the lack of a medical diagnosis, people with Fibromyalgia may encounter a lack of understanding, disbelief, and invalidating attitudes regarding the reality of their experience. Unfortunately, this can present an additional challenge for many people with Fibromyalgia.

    The purpose of this research is to understand more about the impact on people with Fibromyalgia of having their symptoms invalidated by others - including family, work colleagues, and medical professionals. It is hoped that research like this will help to raise awareness regarding the impact of a lack of understanding of Fibromyalgia.

    If you choose to complete the online survey, your participation will be invaluable in contributing to a better understanding of the extent and impact of illness invalidation experiences on people living with Fibromyalgia.

    This research has been granted ethical approval by the National University of Ireland Research Ethics Committee, and a report on the study results will be made available to you through in September 2011.

    The survey should take between 25 and 40 minutes to complete, depending on how fast you read! The link below will provide you with further information about the research. If clicking the link does not take you directly to the online survey, you can access it by copying and pasting the link into the address bar of your web browser.


    Thank You for your valuable contribution and for supporting the research!

    With Kind Regards,
    Caroline Kenny, DPsychSc
    Psychologist in Clinical Training
    National University of Ireland , Galway

    Copyright 2011 ProHealth, Inc.
    Printed From:
  2. carol


    I've done the survey. It takes about 30mins and it's something we can do to highlight the isolation and disbelief we suffer. I would encourage all sufferers to complete it.
  3. Enid

    Enid Senior Member

    But I don't have fibromyalgia - I do have ME which includes Fibromyalgia - disbelief 100%. Don't really fit the bill.
  4. Esther12

    Esther12 Senior Member

    This is the sort of research that should have been done 20 years ago, prior to deciding whether the biopsychosocial approach would benefit or hurt patients.
  5. L'engle

    L'engle moogle

    This is great. One specific to ME/CFIDS would be excellent as well. My pain is from exhaustion, not really FM in the classic sense so I don't feel I can fill it out.
  6. paddygirl

    paddygirl Senior Member

    Just did it but I made a very specific comment that I would not wish my input to be used for any Wessely-ish babbling. How very sad that he and his cronies have made us so distrustful of them.:(
  7. PhoenixDown

    PhoenixDown Senior Member

    I've had a look and it looks like there's a strong psychological angle to the questionnaire. I don't mind such research if it's 100% intellectually honest, doesn't make careless assumptions, and doesn't take up public funds (we've lost millions already) but I think they are beating a dead horse with this avenue of thinking.
  8. Desdinova

    Desdinova Senior Member

    As someone with an FM diagnosis I'm personally weary of participating in any study with any mental health professional. Especially if that persons past history, current stance on and future plans involving FM are unknown to me. Least I play a part in furthering someones round hole square peg make it fit agenda.
    Enid likes this.

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