• 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.

    To become a member, simply click the Register button at the top right.

Search results

  1. I

    B cells and autoimmunity: Is measuring antibody titers reliable when B cells are low?

    Hi @Shanti1, thank you very much! I find this very interesting and helpful - so if you have more to read, I'll be interested. :D In my case CD19/CD20 cells are lowish (low-normal to slightly low), Igg3 subclasses are transiently low, slightly lowered: IgA CD27+ memory B cells low: IgA CD27-...
  2. I

    B cells and autoimmunity: Is measuring antibody titers reliable when B cells are low?

    Yes, @Shanti1, they were measured. IgA and IgG are normal (I have low sIgA), Igg3 is transiently low (got Igg in the past for that). Can you explain?
  3. I

    B cells and autoimmunity: Is measuring antibody titers reliable when B cells are low?

    Thank you @Gingergrrl for your reply! :hug: Via a lab test (blood sample). Yes, it's a lymphocyte subset panel. The standard panels here don't include CD19/CD20 though, that had to be included manually. CD19/CD20 wasn't very low or zero, it was at the lower limit and slightly decreased.
  4. I

    B cells and autoimmunity: Is measuring antibody titers reliable when B cells are low?

    Hi @Gingergrrl Thank you for asking. You make good points. I guess every substance that B cells produce and can be measured by a lab could be affected. But in my original post I only meant autoimmune testing for autoantibodies (because I didn't think of the rest). My B cells are low/lowish...
  5. I

    B cells and autoimmunity: Is measuring antibody titers reliable when B cells are low?

    That's definitely interesting. 🤔 And quite helpful. How can you spot B-cell autoimmunity then? And, if antibodies can't be really produced... how can you have B-cell autoimmunity at all? Or is it just like this: I will read both your posts tomorrow again. I seem to have a low concentration...
  6. I

    B cells and autoimmunity: Is measuring antibody titers reliable when B cells are low?

    Thank you @Pyrrhus, that helps. How do you "work around"/integrate this when checking for autoimmunity related to CD19/CD20?
  7. I

    B cells and autoimmunity: Is measuring antibody titers reliable when B cells are low?

    Hi everybody, somewhere in a post (I think by @Pyrrhus) I read that measuring virus titers is unreliable if IgM/IgG/IgA are low. I wonder if the same applies to low B cells, specifically CD19+ and CD20+ B cells (CD20+ are depleted during Rituximab treatment if I understood correctly, and that...
  8. I

    Poll: Have you ever experienced complete paralysis of a part of your body?

    Maybe nobody. I would maybe try to get to Dr. W. in Germany. (Yeah, but... I know.) I would contact the PPA for help. E.g. they have "Ask the Experts" and other things... They are very supportive.
  9. I

    Poll: Have you ever experienced complete paralysis of a part of your body?

    In UK, there are Hanna et al. who do some PP research, but they were not recommended to me by people who know better. I.e. it sounds very much like this team is "textbook PP experts".
  10. I

    Poll: Have you ever experienced complete paralysis of a part of your body?

    Cool @Jenny TipsforME that you replied after all these years. Re. POTS as trigger: Epinephrine activates the Na-Ka-pump, which often leads to the potassium dysbalance observed in PP. Or: epinehrine often is a paralysis trigger in hypoPP. I not sure how it is with norepinephrine, but I guess...
  11. I

    You probably have an autoimmune disease...

    Thank you @Gingergrrl! I remember now you told me that before, but not in that detail, and I find it helpful.
  12. I

    Updated Diagnostic Criteria and Classification of Mast Cell Disorders: A Consensus Proposal

    It has a doi, i.e. it's a publication. I was only saying my opinion about the publication.
  13. I

    Updated Diagnostic Criteria and Classification of Mast Cell Disorders: A Consensus Proposal

    I don't find it helpful that both groups, the "tryptase group" (to which this publication belongs - Valent is one of *the* tryptase proponents: it's only MCAS if you have anaphylactic shocks/elevated blood tryptase) and the "non tryptase-group", each write about "consensus criteria" if there...
  14. I

    You probably have an autoimmune disease...

    I read on a Renaissance historian's blog that (in her view) autoimmunity is the result of the Black Death (I think 1378 or 1348) and the following Plagues. Because only people with a stronger immune system survived, but a stronger IS comes at the cost of autoimmunity. I have to specify: The...
  15. I

    You probably have an autoimmune disease...

    TPO and MAK were elevated several times (some years later they were normal again) - I was told I have Hashimoto's, but ultrasound shows a small, but otherwise normal thyroid. What's interesting is I have a slightly jumping TSH between 0.01 and 1.4 (no change in symptoms). GAD65 was elevated...
  16. I

    SFN without pain?

    I got SCIG, it didn't help with symptoms like exhaustion and fatiguability or muscle problems. It worsened POTS for 2-3 days substantially. I had severe headaches (took prednisolone for it). But SCIG is not IVIG. The neurologist that diagnosed SFN only recommended IVIG for autoimmune SFN. Even...
  17. I

    Is me/cfs a blood disorder?

    I tried using an oxygen machine. It helped slightly, but not really, and in the long run the effects subsided. I wondered the same: If oxygen played a role, shouldn't extra oxygen help? On the other hand: If "transport systems" are affected, extra oxygen wouldn't help that much I think. In POTS...
  18. I

    SFN without pain?

    I have SFN, confirmed by QST and skin biopsy of upper and lower leg. I have no pain. I have dysautonomia, presenting, amongst others, as hyperadrenergic and neuropathic POTS. I have Raynaud's, too, and I have problems with temperature regulation. The sweat test was normal. At a clinic, a "finger...
  19. I

    Is me/cfs a blood disorder?

    I have "sticky platelet syndrome". I have no idea what this is and it was not followed up. I also don't know if this is relevant.
  20. I

    Germany: ME/CFS in Germany

    I am glad I was proved wrong. But to defend myself :D this is unique in the ME world. Congratulations to the organizers who have done an amazing job, but also thanks to all who participated.
  21. I

    Poll: Have you ever experienced complete paralysis of a part of your body?

    It won't be a surprise :D Yes. Why does it interest you?
  22. I

    Exercise Intolerance: Insights from Invasive Cardiopulmonary Exercise Testing of Patients with ME/CFS (Joseph et al., 2021)

    Would you link? This is new to me, so I can learn. The same here. Do I understand you correctly that you say some with SFN present mainly with pain, others mainly with fatigue and/or PEM? Where do you have that from? QST and skin biopsy show SFN, but I don't have pain. That's why it was...
  23. I

    Exercise Intolerance: Insights from Invasive Cardiopulmonary Exercise Testing of Patients with ME/CFS (Joseph et al., 2021)

    So if a skin biopsy shows SFN in the lower AND upper leg (and a QST shows SFN in the hands), the SFN is not caused by poor circulation?
  24. I

    Exercise Intolerance: Insights from Invasive Cardiopulmonary Exercise Testing of Patients with ME/CFS (Joseph et al., 2021)

    For those with SFN...Does this mean...exercise accelerates destruction of small fibers? Does being upright? For those with POTS or anything else that leads to this oxygen problem... Does this lead to the onset of SFN? (But not everyone with POTS, e.g., has SFN...) Since being upright and...
  25. I

    Dr David Tuller: Advocates Issue Hopeful Comments After NICE Pow-Wow on ME/CFS Guideline

    Thank you @Countrygirl! I personally think the BPS proponents were relatively quiet because they found their solution of how to proceed with their agendas. I agree they will probably proceed with new names, a strategy psychiatry has used for decades. Or: "They speak with a forked tongue"...
  26. I

    Dr David Tuller: Advocates Issue Hopeful Comments After NICE Pow-Wow on ME/CFS Guideline

    How come that MEAction and your source say opposite things? Honestly, it all sounds too good to be true. Also, if everybody agreed what was all the fuss about...Sure, there may have been efforts behind the scenes. As I said in another thread I may be too negative.
  27. I

    The NICE Round Table Meeting to be postponed to October with the Royal Colleges' Prof Dame Carol Black as Chair

    Recent developments indicate to me that GET/CBT will remain. I am, as I confess, pretty negative about this. It seems that, indeed, certain powers intervened. I honestly never thought anything will change without substantial pressure on those in power. That's always been so in history, we are...
  28. I

    Petition 122600 to the German Bundestag: Healthcare, Scientific Research and Political Support for ME/CFS Sufferers!

    I really don't want to be pessimistic, but considering that MEAction has gathered around 20,000 signatures in other actions - as far as I know over a longer period than 4 weeks? and with better social networking? - I see little chance that this creates 50,000. When I look at some of the...
  29. I

    NICE is facing a legal challenge over its ME guidelines delay

    In my view that sounds like a strawman argument. Yes, legally they may not be able to bind medical staff, but medical staff are bound to guidelines. A doctor would have to have good arguments for deviating from them before a court. It would always be a decision from case to case, and I doubt a...
  30. I

    Temporary paralysis I need your Insights

    In my case, if I am completely paralyzed, I can't move my body. I would have to pee in my bed...luckily it never happened. 😅 I can open my eyes a bit and briefly, and I can say single words with a lot of will. My consciousness is not affected, but it seems certain brain areas are "on pause". I...