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Interactions with Medical Professionals

Discussion in 'Active Clinical Studies' started by Elizabeth Kendrick, Nov 4, 2012.

  1. Elizabeth Kendrick

    Elizabeth Kendrick

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    Do you suffer from chronic fatigue syndrome? How has your interaction with medical providers affected you? Would you like to share your experiences with others? Please participate in the survey below to add your voice to the body of research on chronic fatigue syndrome. After completing the survey, please share this link with others who suffer from CFS. https://www.surveymonkey.com/s/R79PHB2

  2. Valentijn

    Valentijn Activity Level: 3

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    "Have you gone to a medical professional during the past year for treatment of your chronic fatigue symptoms?"
    "Are you currently being treated for your chronic fatigue symptoms by a medical care provider?"
    "Have you been prescribed any medications in the past month to treat symptoms associated with your chronic fatigue?"
    "During the past month, how often have you had unusual fatigue after exertion?"

    SIGH. We Do Not Have Chronic Fatigue. We have ME/CFS, of which chronic fatigue is sometimes a symptom. Chronic fatigue is a symptom, not an illness - there are no symptoms of a symptom.

    And the thing we get after exertion is not fatigue. It's illness. Or do you call it fatigue when you have a bad case of the flu?
    Waverunner and Enid like this.
  3. Valentijn

    Valentijn Activity Level: 3

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    Lots of typical psych stuff, no mention of OI, no understanding of PEM. Waste of time.
  4. pamb

    pamb Senior Member

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    In the past, not much help at all, except the usual psychiatric ideas. arghhhhhh. Amazingly, time has passed and now, in Edmonton, Canada, my husband has two physicians who actually understand some of what is going on. It is such a relief. One is his pain doc, so it helps that he understands the concept of pacing and PEM, the other is the environmental doc we've been working with for three months. Need to post in the right place on that, some slow progress in reducing inflammation.
    on the other hand - John's current GP has no clue and no interest in learning, so we only see him for stuff you have to see a GP for, and don't look for anything other than the prescription of the day, if we know before going in that a specific med is needed for an acute flare up of a skin rash or something.
    Valentijn likes this.
  5. Elizabeth Kendrick

    Elizabeth Kendrick

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    Hi, Valentijn,

    Thank you for writing about your concerns and frustrations. I meant no offense in using the term "Chronic Fatigue Syndrome." As someone who also has suffered, following infection with CMV, I have always called it "chronic faigue syndrome," even though I've become aware of a recent development of the term ME. I totally agree that "chronic fatigue" does not even begin to encapsulate the sick feeling of malaise that follows exertion. It is truly an awful experience. That has been something that has frustrated me, also. I used the term "chronic fatigue syndrome" in my study, thinking it was the more commonly used term, and I wanted to make sure participants knew what I was talking about when I used the term. During the first year or so of my suffering, I had never heard the term "ME," so if someone had posted a survey about it, I would not have thought it applied to me. I certainly meant no disrespect in using the term "chronic fatigue" - to disrespect the experiences of others sufferers would be to disrespect my own experience of the illness.

    I am a doctoral student, and I intend to dedicate my life's career to working on research pertaining to CFS/ME, due to my own experiences with it. I hope there is room for me in the CFS/ME community to do this work. I really want to make a difference!

    Kind regards,

    ~Elizabeth Kendrick
  6. Denise

    Denise Senior Member

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    I hope that PR members/readers will think carefully about their participation in this survey. https://www.surveymonkey.com/s/R79PHB2
    From the survey start page:
    "Project Title: Perceived Illness Invalidation from Medical Professionals and Perceived Stress as Predictors of Symptom Distress Among Chronic Fatigue Sufferers.

    Principal Investigator: Elizabeth A. Kendrick, M.S.
    Faculty Sponsor: Denise Beesley, Ph.D.
    Department: Educational Psychology

    You are being asked to volunteer for this research study if you are between the ages of 18 and 64, suffer from chronic fatigue, and are not pregnant.

    Purpose of the Research Study: The purpose of this study is to learn more about how interactions with medical providers impact individuals with chronic fatigue syndrome."

    As you notice, the survey does not always distinguish between ME/CFS and chronic fatigue. Going through the survey I say quite a few things that concern me about the survey.

    I hope that someone here can also post concerns about the survey on Co-Cure.
  7. Elizabeth Kendrick

    Elizabeth Kendrick

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    Hi, Denise,

    Thank you for writing about your concerns and frustrations. I meant no offense in using the term "Chronic Fatigue Syndrome." As someone who also has suffered, following infection with CMV, I have always called it "chronic faigue syndrome," even though I've become aware of a recent development of the term ME. I totally agree that "chronic fatigue" does not even begin to encapsulate the sick feeling of malaise that follows exertion. It is truly an awful experience. That has been something that has frustrated me, also. I used the term "chronic fatigue syndrome" in my study, thinking it was the more commonly used term, and I wanted to make sure participants knew what I was talking about when I used the term. During the first year or so of my suffering, I had never heard the term "ME," so if someone had posted a survey about it, I would not have thought it applied to me. I wanted to make sure even new sufferers knew if pertained to them. I certainly meant no disrespect in using the term "chronic fatigue" - to disrespect the experiences of others sufferers would be to disrespect my own experience of the illness. The only reason I ever even developed an interest in this area was because of my own horrific experiences with the disorder.

    I am a doctoral student, and I intend to dedicate my life's career to working on research pertaining to CFS/ME, due to my own experiences with it. I hope there is room for me in the CFS/ME community to do this work. I really want to make a difference!

    Kind regards,

    ~Elizabeth Kendrick
  8. Elizabeth Kendrick

    Elizabeth Kendrick

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    P.S. You mentioned that there were several things that concernd you about the survey, in addition to the reference to "chronic fatigue." Do you mind to share those concerns with me? I really want my survey to be all that it needs to be. I really care about this research. Please feel free to email me about your concerns at the email address listed on the first page of the survey.

    Kind regards,

    ~Elizabeth Kendrick
  9. Valentijn

    Valentijn Activity Level: 3

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    "CFS" isn't the problem, but calling it CF in several questions definitely is a problem.
    taniaaust1, Enid and Adamskitutu like this.
  10. Elizabeth Kendrick

    Elizabeth Kendrick

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    Oh, okay. I will talk to my advisor about whether we should submit with the IRB to make a change to the wording then. Thank you for the input! I really appreciate it.
    taniaaust1 and SickOfSickness like this.
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Also, have you read the international diagnostic criteria for ME? This might give you some ideas about shifting the slant to reflect some of the most common symptoms like OI and more about the nature of PEM.

    Sushi
    Enid and Valentijn like this.
  12. Elizabeth Kendrick

    Elizabeth Kendrick

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    Thank you so much, Sushi. I will definitely look into that, and I will plan to approach things differently in future research.

    Many thanks,

    ~Elizabeth
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Thanks. I haven't looked at the questions myself but Valentijn feels that they reflect more of a psychological approach and that won't "fly" with ME/CFS patients.

    Sushi
    Enid and ggingues like this.
  14. ukxmrv

    ukxmrv Senior Member

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    What are you studying Elizabeth?
  15. Elizabeth Kendrick

    Elizabeth Kendrick

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    I am studying counseling psychology. I became ill following a CMV infection, during the last semester of my master's program. I ended up having to take a medical leave of absence from my school and from my work, during my first semester of my doctoral program, due to extreme post-extertional malaise, severe insomnia, daily low-grade fevers, cognitive fog, difficulty speaking, difficulty functioning in routine daily life, and depresson (that came on AFTER I became ill, and did NOT cause my symptoms). After 1 1/2 years of illness, I am doing much better now, and I care deeply about having my research make a difference for the CFS/ME community.
  16. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I agree. I will not spend the time to help "support" a flawed questionarre/document. Just helps propagate the rubbish!

    GG
  17. tatt

    tatt

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    I had some problems trying to complete the questionnaire because it doesn't really cover what I see as the main problems. I become ill if I try to do too much - and that includes answering questionnaires. I do better if I lie flat when I need to think, although my doctor tells me I don't have POTS (without testing for it). I get depressed when I see doctors who have no idea what my problem is or how to treat it - so as far as possible I avoid them. Apart from that I'm not depressed because I have fora to seek a solution. Friends tend to disappear when you can't share anything with them - so those with severe ME may have few left. Doesn't really fit with your questions and I would have liked an opportunity to say that.
  18. Elizabeth Kendrick

    Elizabeth Kendrick

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    Thank you for sharing that, Tatt. I agree that, from my own experience, the cognitive exertion can lead to as much malaise as physical exertion. (That is one reason I had to take a medical leave from my doctoral program during the first semester.) I would like to find a research measure that includes that. I may ask my friend, Dr. Lenny Jason, if he knows of a measure that would include that feature. I also identify with what you wrote about depression. I was not depressed until I became sick with CMV and then remained sick for 1 1/2 years. Prior to that, I had been a particularly happy person. As for the friendships, I totally identify with that, as well. I think that a future research study assessing the impact of CFS on friendships would be a wonderful idea for a study! Thank you so much for sharing your thoughts!

    Kind regards,

    ~Elizabeth Kendrick
  19. Enid

    Enid Senior Member

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    Just to add my experience of "interactions with medical professions" is that they will not interact with ME - the range of symptoms simply confuses and historically here in the UK ME/CFS is considered "psychological".
  20. Peter Kemp

    Peter Kemp

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    Dear Elizabeth,

    here are my concerns. I look forward to reading your reply.

    Elizabeth Kendrik M.S. stated in a message on CoCure 04 November 2012 06:25:

    "Do you suffer from chronic fatigue syndrome? How has your interaction with
    medical providers affected you? Would you like to share your experiences
    with others? Please participate in the survey below to add your voice to the
    body of research on chronic fatigue syndrome. After completing the survey,
    please share this link with others who suffer from CFS.
    https://www.surveymonkey.com/s/R79PHB2 "

    I have gone through this survey and can detect nothing that relates to "How
    has your interaction with medical providers affected you?". There is a page
    of questions about interactions with medical professionals; e.g.: "Medical
    professionals think I should be tougher" [select from - Seldom, Sometimes,
    Often, Very Often]. There is nothing about how this affected the
    respondent.

    There are virtually identical pages of questions for interactions with
    Social Services, Family, Spouse/Partner, Work colleagues. There are
    questions seeking details about diagnosis and symptoms. There are questions
    that appear to be evaluating coping, anxiety, depression and emotional
    lability.

    I do not believe that this research is about: 'How has your interaction with
    medical providers affected you?'

    If this is a mistake, in my opinion it would still be unacceptable to mislead potential
    research participants.

    Peter Kemp
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