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  1. Pibee
    Post

    Nature: ‘It’s all gone’: CAR-T therapy forces autoimmune diseases into remission

    seems CD19 wont be enough for MS, ... at least based on OCB just dropping in 1 patient and persisting in other, that's discouraging. It might...
    Post by: Pibee, Apr 4, 2024 in forum: Other health news and research
  2. Pibee
    Post

    TSHR-based chimeric antigen receptor T cell specifically deplete auto-reactive B lymphocytes for treatment of autoimmune thyroid disease, 2023, Huang+

    No, I haven't heard anything for Graves, except maybe running into the same study you shared here. It seems definitely far from happening for...
    Post by: Pibee, Mar 14, 2024 in forum: Other health news and research
  3. Pibee
    Post

    Nature: ‘It’s all gone’: CAR-T therapy forces autoimmune diseases into remission

    I know CAR-T aimed at B-cells for antigens of MusK and DSG3-CAART for pemphigus vugaris, failed, with or without chemo preconditioning. Do you...
    Post by: Pibee, Feb 28, 2024 in forum: Other health news and research
  4. Pibee
    Post

    Nature: ‘It’s all gone’: CAR-T therapy forces autoimmune diseases into remission

    It will be soon 3 years for the first [German] patient (it was done 1+ years earlier in China and because they used CD19-BCMA they have even...
    Post by: Pibee, Feb 24, 2024 in forum: Other health news and research
  5. Pibee
    Post

    Nature: ‘It’s all gone’: CAR-T therapy forces autoimmune diseases into remission

    I never expected that I, as a MECFS/Sjogrens/POTS/SFN person can be cured by CD19 alone, I feared for 2 yrs it will require BCMA. Seems Chinese...
    Post by: Pibee, Feb 24, 2024 in forum: Other health news and research
  6. Pibee
    Thread

    Autoantibodies identify primary Sjögren's syndrome in patients lacking serum IgG specific for Ro/SS-A and La/SS-B, Longobardi et al, 2023

    https://pubmed.ncbi.nlm.nih.gov/37147113/ Abstract Objective: Identify autoantibodies in anti-Ro/SS-A negative primary Sjögren's syndrome (SS)....
    Thread by: Pibee, Feb 3, 2024, 0 replies, in forum: 'Conditions related to ME/CFS' news and research
  7. Pibee
    Post

    Metabolic Disorders Causing Fatigue and Exercise intolerance in Sjogren’s Syndrome, 2014 Suresh et al

    Just to make it a bit more clear that the seronegative Sjogrens (no SSA) is not a made-up thing by private physicians, but it is included in the...
    Post by: Pibee, Feb 3, 2024 in forum: 'Conditions related to ME/CFS' news and research
  8. Pibee
    Post

    Nature: ‘It’s all gone’: CAR-T therapy forces autoimmune diseases into remission

    yeah very impressive. Just afraid if anti-BCMA would make relapse earlier than when also CD19 used, and if we need both
    Post by: Pibee, Feb 2, 2024 in forum: Other health news and research
  9. Pibee
    Post

    Metabolic Disorders Causing Fatigue and Exercise intolerance in Sjogren’s Syndrome, 2014 Suresh et al

    I am not diagnosed by private physicians, I am diagnosed in a University hospital with a lip biopsy They don't need to change the definition of...
    Post by: Pibee, Feb 2, 2024 in forum: 'Conditions related to ME/CFS' news and research
  10. Pibee
    Post

    Nature: ‘It’s all gone’: CAR-T therapy forces autoimmune diseases into remission

    https://www.pnas.org/doi/pdf/10.1073/pnas.2315990121 25 year old patient with Sjogrens / immune-mediated necrotizing myopathy (IMNM) successfully...
    Post by: Pibee, Feb 2, 2024 in forum: Other health news and research
  11. Pibee
    Post

    Metabolic Disorders Causing Fatigue and Exercise intolerance in Sjogren’s Syndrome, 2014 Suresh et al

    Depends on the study, testing method etc. So can't be concluded yet. Thus, open discussion. Same applies for Sjogrens...you'll find study saying...
    Post by: Pibee, Feb 1, 2024 in forum: 'Conditions related to ME/CFS' news and research
  12. Pibee
    Post

    Metabolic Disorders Causing Fatigue and Exercise intolerance in Sjogren’s Syndrome, 2014 Suresh et al

    I think the benefits in my case were from reducing bacterial overgrowth /SIBO in the beginning, 10+ days, and then overkill. I get the same...
    Post by: Pibee, Jan 31, 2024 in forum: 'Conditions related to ME/CFS' news and research
  13. Pibee
    Post

    Metabolic Disorders Causing Fatigue and Exercise intolerance in Sjogren’s Syndrome, 2014 Suresh et al

    Many of us were diagnosed without dryness and/or SSA, with lip biopsy. My lip biopsy showed 1 focus score even before I developed dryness, over 5...
    Post by: Pibee, Jan 30, 2024 in forum: 'Conditions related to ME/CFS' news and research
  14. Pibee
    Post

    Metabolic Disorders Causing Fatigue and Exercise intolerance in Sjogren’s Syndrome, 2014 Suresh et al

    I can barely spit, and recently had my saliva volume measured and they said it's normal. I couldn't believe it. The ref. range for saliva volume...
    Post by: Pibee, Jan 30, 2024 in forum: 'Conditions related to ME/CFS' news and research
  15. Pibee
    Post

    Metabolic Disorders Causing Fatigue and Exercise intolerance in Sjogren’s Syndrome, 2014 Suresh et al

    See the studies below. Also, note, as you mentioned with ME, in Sjogrens research the problem is they do it on some cohort they had recognized,...
    Post by: Pibee, Jan 30, 2024 in forum: 'Conditions related to ME/CFS' news and research
  16. Pibee
    Post

    Metabolic Disorders Causing Fatigue and Exercise intolerance in Sjogren’s Syndrome, 2014 Suresh et al

    I cant exercise, because dysautonomia. And fatigue I had 2005-2019, then got rid of it after IVIG + abx (I guess something metabolic) but at the...
    Post by: Pibee, Jan 28, 2024 in forum: 'Conditions related to ME/CFS' news and research
  17. Pibee
    Thread

    Metabolic Disorders Causing Fatigue and Exercise intolerance in Sjogren’s Syndrome, 2014 Suresh et al

    Metabolic Disorders Causing Fatigue in Sjogren’s Syndrome ABSTRACT NUMBER: 2546 Metabolic Disorders Causing Fatigue in Sjogren’s Syndrome...
    Thread by: Pibee, Jan 27, 2024, 26 replies, in forum: 'Conditions related to ME/CFS' news and research
  18. Pibee
    Post

    Nature: ‘It’s all gone’: CAR-T therapy forces autoimmune diseases into remission

    There are actually 2 case reports in CAR-T BCMA research on NMOSD, 3 out of 13 patients had also Sjogren's (or better say Sjogren's caused their...
    Post by: Pibee, Jan 25, 2024 in forum: Other health news and research
  19. Pibee
    Post

    Nature: ‘It’s all gone’: CAR-T therapy forces autoimmune diseases into remission

    CAR-NK CD19 is being tested in China for Sjogrens so hopefully they release case reports early. SLE case reports look good but they released them...
    Post by: Pibee, Jan 25, 2024 in forum: Other health news and research
  20. Pibee
    Post

    Nature: ‘It’s all gone’: CAR-T therapy forces autoimmune diseases into remission

    [IMG] From lupusencyclopedia Join us FEB 3 at 5PM EST for an online talk about CAR-T cell therapy in...
    Post by: Pibee, Jan 8, 2024 in forum: Other health news and research
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