• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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    Interactions with Medical Professionals

    I understand the suspciousness and mistrust, Valentijn, particularly since I recall my frustration and sense of betrayal upon searching the psychological journals and finding that almost all research denigrated the experiences of CFS sufferers as being psychopathological. I had hoped to bring a...
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    Interactions with Medical Professionals

    Thank you to all who participated in this research study. Almost 300 people have participated, so my advisor and I have decided to close the survey. I truly appreciate each of you who allowed your voice to be part of this study. My hope is that we will make a difference in educating the medical...
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    Interactions with Medical Professionals

    Thank you so much for offering your perspectives and ideas. I am reconsidering my previous plan to devote my life's career to researching CFS, but if I do continue with that plan, I will certainly be more consistent in my use of the term CFS and will likely add ME to that, as well. I actually...
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    Interactions with Medical Professionals

    You shared some valuable perspectives, and I thank you for responding. I am experiencing some reluctance, at this point, of continuing with my previous plan of devoting my life's career to researching CFS. I care deeply about what my experience with suffering was like, and I envisioned...
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    Interactions with Medical Professionals

    Dear Mr. Kemp, I appreciate you writing to me, as I truly care about how my research impacts my participants. I sincerely did not intend for my research to appear deceptive in any way, and it was certainly not designed with deception in mind. The survey questions about the frequency and severity...
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    Interactions with Medical Professionals

    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...
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    Interactions with Medical Professionals

    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...
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    Interactions with Medical Professionals

    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
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    Interactions with Medical Professionals

    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.
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    Interactions with Medical Professionals

    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...
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    Interactions with Medical Professionals

    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...
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    Interactions with Medical Professionals

    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...
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    Interactions with Medical Professionals

    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...