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  1. LJord
    Post

    2024: NIH National Institutes of Health - ME/CFS Symposium on Intramural study - 2 May

    And where are they beginning? Effort preference.
    Post by: LJord, May 2, 2024 in forum: ME/CFS research news
  2. LJord
    Post

    Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

    I am doubting the accuracy of HRV as a predictor but then I am also doubting I’m getting good readings since I switched the the arm band. That’s...
    Post by: LJord, Apr 11, 2024 in forum: Monitoring and pacing
  3. LJord
    Post

    Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

    I’m really curious how Dr. Putrino intends to use the information from the people who volunteered and who use the Visible app.
    Post by: LJord, Apr 10, 2024 in forum: Monitoring and pacing
  4. LJord
    Post

    Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

    I can stay under the allowance until I do something wild and crazy like taking a shower. Then all bets are off for a few days. Then there are...
    Post by: LJord, Apr 10, 2024 in forum: Monitoring and pacing
  5. LJord
    Post

    Functional Neurological Disorder (FND) - articles, social media and discussion

    This isn’t theoretical for me. In an emergency room I was told that the Dr. would not answer my questions because I needed to believe in the...
    Post by: LJord, Apr 4, 2024 in forum: Psychosomatic theories and treatments discussions
  6. LJord
    Post

    Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

    I did the FUNCAP yesterday and I do remember now. I’m not sure how I feel about it. It says I’ve improved. I’m finding that I’m getting so much...
    Post by: LJord, Apr 3, 2024 in forum: Monitoring and pacing
  7. LJord
    Post

    Functional Neurological Disorder (FND) - articles, social media and discussion

    And yet, no one is denying people diagnosed with FND of the treatment they are receiving whereas people misdiagnosed with FND are in fact denied...
    Post by: LJord, Apr 2, 2024 in forum: Psychosomatic theories and treatments discussions
  8. LJord
    Post

    Review The vicious cycle of [FND]s: a synthesis of healthcare professionals’ views on working with patients, 2020, Barnett, Tyson et al

    I have been diagnosed with FND and both times the history was misrepresented in my records to make me fit the FND criteria. I don’t as far as I...
    Post by: LJord, Apr 2, 2024 in forum: Other psychosomatic news and research
  9. LJord
    Post

    Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

    I sometimes worry about my memory.
    Post by: LJord, Mar 28, 2024 in forum: Monitoring and pacing
  10. LJord
    Post

    Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

    Huh. I have no memory of a questionnaire. But I do see previous health reports.
    Post by: LJord, Mar 28, 2024 in forum: Monitoring and pacing
  11. LJord
    Post

    Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

    Where is that? I haven’t seen this. So far it’s symptom severity but I’m thinking I’m looking in the wrong place.
    Post by: LJord, Mar 28, 2024 in forum: Monitoring and pacing
  12. LJord
    Post

    Prevalence of autoimmune diseases in functional neurological disorder: influence of psychiatric comorbidities and biological sex, 2024, Joseph et al.

    You laugh. I’m in Boston struggling to get medical care. I’m freaking terrified.
    Post by: LJord, Mar 21, 2024 in forum: Other health news and research
  13. LJord
    Post

    Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

    They do have a FB group. It is very active.
    Post by: LJord, Mar 18, 2024 in forum: Monitoring and pacing
  14. LJord
    Post

    Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

    I started with the free Visible HRV app. I have been using the more extensive paid app since it came out. Initially it was just a relief to have...
    Post by: LJord, Mar 9, 2024 in forum: Monitoring and pacing
  15. LJord
    Post

    Acupuncture and other traditional Chinese medicine news and discussion thread

    So I’ve never heard anyone claiming acupuncture as a cure. I do go to an acupuncturist and have a heart monitor on. I’ve noticed that my heart...
    Post by: LJord, Jan 18, 2024 in forum: Other treatments
  16. LJord
    Post

    Neuroimaging in Functional Neurological Disorder: State of the Field and Research Agenda, 2021, Perez, Carson, Edwards, Hallet, Stone et al

    So I somehow I just thought it was a woman? I must not have read it as carefully as you have. I was pretty triggered.
    Post by: LJord, Dec 17, 2023 in forum: Other psychosomatic news and research
  17. LJord
    Post

    Neuroimaging in Functional Neurological Disorder: State of the Field and Research Agenda, 2021, Perez, Carson, Edwards, Hallet, Stone et al

    David Tuller included a link to an article by a woman who was profoundly grateful for her FND diagnosis. It is long and in depth. She states...
    Post by: LJord, Dec 17, 2023 in forum: Other psychosomatic news and research
  18. LJord
    Post

    Neuroimaging in Functional Neurological Disorder: State of the Field and Research Agenda, 2021, Perez, Carson, Edwards, Hallet, Stone et al

    My question is: Does the Hoovers (sign?) actually indicate anything real? I also want to know what the difference is between a Functional stroke...
    Post by: LJord, Nov 30, 2023 in forum: Other psychosomatic news and research
  19. LJord
    Post

    Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

    I also find the HRV score to be fairly useless. Timing is a problem and the outcomes don’t match my reality. I’m currently trying to track...
    Post by: LJord, Nov 28, 2023 in forum: Monitoring and pacing
  20. LJord
    Post

    A Quick and Practical Approach to Secure a Chronic Fatigue Syndrome Diagnosis: The Novel Functional Limitation Index 2023, Corbalan et al

    It is important to me in order to get treatment for anything at all (was labeled with Functional Neurologic Disorder and now everything is in my...
    Post by: LJord, Nov 25, 2023 in forum: ME/CFS research
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