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  1. Dancer
    Post

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

    I'm trying this, too. So far (four days) I'm really appreciating the ease (just a quick morning and evening check-in) and the fact I could pick...
    Post by: Dancer, Nov 25, 2022 in forum: Monitoring and pacing
  2. Dancer
    Post

    Open New York, USA: Assessment of N-Acetylcysteine as Therapy for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (NAC ME/CFS)

    I do think the finding of low glutathione is interesting - I definitely had that. But I tried NAC and also glutathione IV treatments and none of...
    Post by: Dancer, Sep 10, 2020 in forum: Recruitment into current ME/CFS research studies
  3. Dancer
    Post

    David Tuller - Trial By Error: This Year’s US Clinician Summit

    I had the same problem with stomach pain after being on LDN - but my integrative health doc prescribed a topical cream of LDN that I applied each...
    Post by: Dancer, Jun 8, 2019 in forum: General ME/CFS news
  4. Dancer
    Post

    An ME patient goes on a virtual pilgrimage Ruth Lampard Church Times May 2019

    I loved this!!! My hubby and I had begun hiking sections of a long trail before I got ill. Our goal had been to eventually complete all sections....
    Post by: Dancer, May 3, 2019 in forum: General ME/CFS news
  5. Dancer
    Post

    NIH: Accelerating Research on ME/CFS meeting, 4th and 5th April 2019

    Ron Davis up next! :-)
    Post by: Dancer, Apr 5, 2019 in forum: General ME/CFS news
  6. Dancer
    Post

    NIH: Accelerating Research on ME/CFS meeting, 4th and 5th April 2019

    Fascinating talk right now about mitochondria fusion/fission activity. [ATTACH]
    Post by: Dancer, Apr 5, 2019 in forum: General ME/CFS news
  7. Dancer
    Post

    NIH: Accelerating Research on ME/CFS meeting, 4th and 5th April 2019

    ME/CFS patients differences in butyrate (not sure I'm posting this slide correctly, so I'm hoping interested folks can see it.)[ATTACH]
    Post by: Dancer, Apr 5, 2019 in forum: General ME/CFS news
  8. Dancer
    Post

    NIH: Accelerating Research on ME/CFS meeting, 4th and 5th April 2019

    Thanks, @andypants!
    Post by: Dancer, Apr 4, 2019 in forum: General ME/CFS news
  9. Dancer
    Post

    NIH: Accelerating Research on ME/CFS meeting, 4th and 5th April 2019

    Are they currently on break? Instead of a black screen, I have the blue title screen. No audio or video.
    Post by: Dancer, Apr 4, 2019 in forum: General ME/CFS news
  10. Dancer
    Post

    NIH: Accelerating Research on ME/CFS meeting, 4th and 5th April 2019

    Cut out for me, too. I've been trying to absorb what I can, but my brain has given up following it. :-)
    Post by: Dancer, Apr 4, 2019 in forum: General ME/CFS news
  11. Dancer
    Post

    NIH: Accelerating Research on ME/CFS meeting, 4th and 5th April 2019

    The current speaker is emphasizing the need for standardized data points and data sharing. A lot is over my head, but what I understand is good...
    Post by: Dancer, Apr 4, 2019 in forum: General ME/CFS news
  12. Dancer
    Post

    NIH: Accelerating Research on ME/CFS meeting, 4th and 5th April 2019

    My main take-away from Naviaux this time was that using the means of studying and/or healing acute illness does NOT work on chronic illness. That...
    Post by: Dancer, Apr 4, 2019 in forum: General ME/CFS news
  13. Dancer
    Post

    New MRT Imaging Biomarkers and Treatment With Kinetic Oscillatory Stimulation (KOS) in Nasal Cavity for ME/CFS, underway, Karolinska University

    Seems like a gizmo is search of having therapeutic value to something (looks like they are proposing it to have value for migraines, and other...
    Post by: Dancer, Apr 19, 2018 in forum: ME/CFS research
  14. Dancer
    Post

    Leonard Jason wants ME/CFS patients to do a PEM survey

    Done. Lenny Jason is a treasure. The very wording of his questions made me feel HEARD. Over the years he has really paid attention to patient's...
    Post by: Dancer, Apr 11, 2018 in forum: ME/CFS research
  15. Dancer
    Post

    Circulating extracellular vesicles as potential biomarkers in CFS (2018) Castro-Marrero et al

    Since I'd never heard of EV's, I did a quick google and see that they are being studied as markers in cancer, aging and other things. So perhaps...
    Post by: Dancer, Mar 27, 2018 in forum: ME/CFS research
  16. Dancer
    Post

    USA: National Institutes of Health (NIH) intramural ME/CFS study

    I would totally volunteer but I've been ill over ten years, so don't qualify. Since it often takes folks so long to even be diagnosed, it may be...
    Post by: Dancer, Mar 21, 2018 in forum: ME/CFS research news
  17. Dancer
    Post

    Low-dose Naltrexone articles and experiences

    Me too. I kept trying LDN in pill form, and after several days, would consistently get sharp stomach pain and GI probs. My doc prescribed a cream...
    Post by: Dancer, Mar 18, 2018 in forum: Drug and supplement treatments
  18. Dancer
    Post

    Solve ME/CFS: "Tell Congress To Give ME/CFS Research a Fighting Chance!"

    Done. I so appreciate Solve ME/CFS making it easy to do. Nothing to look up. Just added a quick personal note and hit send.
    Post by: Dancer, Feb 17, 2018 in forum: Advocacy Action Alerts
  19. Dancer
    Post

    Nature: A reboot for chronic fatigue syndrome research

    But at least she derided the term "yuppie flu" by using the word "snidely."
    Post by: Dancer, Jan 3, 2018 in forum: General ME/CFS news
  20. Dancer
    Post

    Energy envelope maintenance among patients with myalgic encephalomyelitis and chronic fatigue syndrome (2017) O'connor et al.

    One of the difficulties with managing an energy envelope is that it's ever-shifting. Some days I have a bit more strength or last a few minutes...
    Post by: Dancer, Dec 13, 2017 in forum: ME/CFS research
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