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  1. Perrier
    Post

    Efgartigimod (Vyvgart) - what could the trial data possibly tell us?

    Not sure where to post this: list of clinical trials for LC and ME:...
    Post by: Perrier, Feb 28, 2024 in forum: Drug and supplement treatments
  2. Perrier
    Post

    The LIFT trial (OMF) - Pyridostigmine (mestinon) and Low Dose Naltrexone (LDN)

    OMF just posted an interview with Dr. Systrom. Very discouraged here: gives the impression that Mestinon & LDN will help, and then doctors...
    Post by: Perrier, Nov 9, 2023 in forum: ME/CFS research news
  3. Perrier
    Post

    The LIFT trial (OMF) - Pyridostigmine (mestinon) and Low Dose Naltrexone (LDN)

    I have a few friends in the UK & Ireland who are on LDN, but it has not really helped, according to their reports. Folks are desperate and are...
    Post by: Perrier, Nov 2, 2023 in forum: ME/CFS research news
  4. Perrier
    Post

    The LIFT trial (OMF) - Pyridostigmine (mestinon) and Low Dose Naltrexone (LDN)

    I have been in touch with pts in Germany, who were trying it, and also no decent results, and many side effects. If this is all that is on the...
    Post by: Perrier, Nov 1, 2023 in forum: ME/CFS research news
  5. Perrier
    Post

    The LIFT trial (OMF) - Pyridostigmine (mestinon) and Low Dose Naltrexone (LDN)

    OK, mea culpa for assuming what is available in the USA is also available in the UK. in the USA it is easily available. In the early 2000s it...
    Post by: Perrier, Nov 1, 2023 in forum: ME/CFS research news
  6. Perrier
    Post

    The LIFT trial (OMF) - Pyridostigmine (mestinon) and Low Dose Naltrexone (LDN)

    These 2 drugs IMHO will not result in much, and this is a waste of money. LDN is not tolerated by many pts due to side effects. Improvements are...
    Post by: Perrier, Nov 1, 2023 in forum: ME/CFS research news
  7. Perrier
    Post

    Ed Yong: Articles on Long Covid, 2023

    Another brilliant perceptive post dear Hubris. Thank you. Actually there isn’t enough work done on the effects of being forced into this kind of...
    Post by: Perrier, Jul 28, 2023 in forum: General ME/CFS news
  8. Perrier
    Post

    Ed Yong: Articles on Long Covid, 2023

    You describe this very well and my daughter has used similar words. No one should have to have this happen to him or her. We don’t really live in...
    Post by: Perrier, Jul 28, 2023 in forum: General ME/CFS news
  9. Perrier
    Post

    Ed Yong: Articles on Long Covid, 2023

    Thank you. From what I see it looks more like severe weakness, not fatgue: a complete inability to generate energy, and when after days and weeks...
    Post by: Perrier, Jul 28, 2023 in forum: General ME/CFS news
  10. Perrier
    Post

    Ed Yong: Articles on Long Covid, 2023

    Thanks Hubris: your comment is brilliant. My daughter was a criminal lawyer, and indeed the criminal's life is better than a pt with severe ME:...
    Post by: Perrier, Jul 27, 2023 in forum: General ME/CFS news
  11. Perrier
    Post

    Research news from Bhupesh Prusty

    My daughter tried IVIG and it did not alter things: after several infusions, her mouth swelled, tongue swelled, and Benadryl IV had to be...
    Post by: Perrier, Jun 4, 2023 in forum: ME/CFS research news
  12. Perrier
    Post

    International ME/CFS Conference of the Charité Fatigue Center on 11./12. May 2023 in Berlin, supported by the ME/CFS Research Foundation

    Thanks. Now to move on: there will be another ME conference in the UK. Does anyone have more details, so that we can register to watch. I...
    Post by: Perrier, May 12, 2023 in forum: ME/CFS research news
  13. Perrier
    Post

    International ME/CFS Conference of the Charité Fatigue Center on 11./12. May 2023 in Berlin, supported by the ME/CFS Research Foundation

    Does anyone know if this conference, these talks, will be on line at some point? You tube? Thanks
    Post by: Perrier, May 12, 2023 in forum: ME/CFS research news
  14. Perrier
    Post

    Research news from Bhupesh Prusty

    If not mistaken, Dr. Prusty said he had a 'model.'
    Post by: Perrier, May 8, 2023 in forum: ME/CFS research news
  15. Perrier
    Post

    Research news from Bhupesh Prusty

    And what is the test for subgroups? And can autoimmunity be diagnosed? This is a great thread. I really do not appreciate the 'teasing.' The life...
    Post by: Perrier, Apr 26, 2023 in forum: ME/CFS research news
  16. Perrier
    Post

    ME researcher Jonas Bergquist - interviews, talks

    A number of ME patients have done apheresis to remove clots and this has not helped them with any improvement. Some have been on blood thinners...
    Post by: Perrier, Apr 25, 2023 in forum: ME/CFS research news
  17. Perrier
    Post

    Published poems by Veronica Ashenhurst, who has Severe ME

    Trish is right: heartbreakingly beautiful work. These poems brought tears to my eyes.
    Post by: Perrier, Feb 21, 2023 in forum: General Advocacy Discussions
  18. Perrier
    Post

    Machine Learning-assisted Research on ME/CFS

    In Canada (saying from Mohawks): too many Chiefs here not enough Indians. Selfishness at the expense of lives, and suffering, and a very...
    Post by: Perrier, Jan 14, 2023 in forum: General ME/CFS news
  19. Perrier
    Post

    Poem based on Anthony Komaroff ME/CFS article is a finalist in US poetry contest

    Here's someone who did a lovely job of making a graphic of Veronica's poem on twitter: [MEDIA]
    Post by: Perrier, Nov 9, 2022 in forum: Other health news and research
  20. Perrier
    Post

    Poem based on Anthony Komaroff ME/CFS article is a finalist in US poetry contest

    It is very challenging to write a "found' poem because the poet must not change verb tense, nor make a singular noun plural, nor add in a single...
    Post by: Perrier, Nov 7, 2022 in forum: Other health news and research
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