• 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.

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  1. SWAlexander

    Role of pharmacological activity of autoantibodies in ME/CFS

    Abstract Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a condition characterised by extreme fatigue, memory impairment, pain and other symptoms that vary from patient to patient. It affects about 0.9% of the population and is often triggered by an acute...
  2. SWAlexander

    Catalytic Antibodies May Contribute to Demyelination in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

    Abstract: Here we report preliminary data demonstrating that some patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) may have catalytic autoantibodies that cause the breakdown of myelin basic protein (MBP). We propose that these MBP-degradative antibodies are important to...
  3. C

    Dysregulated autoantibodies targeting vaso- and immunoregulatory receptors in Post COVID Syndrome correlate with symptom severity (Sotzny et al, 2022)

    Abstract Most patients with Post COVID Syndrome (PCS) present with a plethora of symptoms without clear evidence of organ dysfunction. A subset of them fulfills diagnostic criteria of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Symptom severity of ME/CFS correlates with natural...
  4. C

    Serum of Post-COVID-19 Syndrome Patients with or without ME/CFS Differentially Affects Endothelial Cell Function In Vitro (Flaskamp et al, 2022)

    Abstract A proportion of COVID-19 reconvalescent patients develop post-COVID-19 syndrome (PCS) including a subgroup fulfilling diagnostic criteria of Myalgic encephalomyelitis/Chronic Fatigue Syndrome (PCS/CFS). Recently, endothelial dysfunction (ED) has been demonstrated in these patients, but...
  5. SWAlexander

    Fibromyalgia likely the result of autoimmune problems

    Summary: New research has shown that many of the symptoms in fibromyalgia syndrome (FMS) are caused by antibodies that increase the activity of pain-sensing nerves throughout the body. The results show that fibromyalgia is a disease of the immune system, rather than the currently...
  6. SWAlexander


    This our First Round Table Discussion on Neurology where leading experts share their experience and research findings/challenges that they face while understanding the whole picture of Long Covid. We discussed how autoantibodies. viral persistance, MAST cell activation, Gut health - all come...
  7. I

    Link between POTS, MCAS and CFS - Innate inflammation in response to an antigen..t-cell exhaustion's role?

    31:00 onwards Dr Grubb explains which autoantibodies are found in POTS and suggests they are driven firstly by the innate immune system, including mast cell mediators and other cytokines, which then triggers the adaptive immune system to make autoantibodies . He argues it can't be coincidence...
  8. I


    Hi, does anyone know if there is anywhere in the UK that offers IVIG privately? I'm looking to try it out as a POTS treatment which seems to be autoimmune in my case. It seems it is only offered on the NHS for immune deficiency and, whilst I know i'm immune deficient (low white blood cells and...
  9. Waverunner

    Tingling hand and feet; worsening by folic acid and B12 supplements

    Hi all, had some strange issues for several weeks now. I suffer from pretty bad food intolerances that seem to evolve over time. Three to four weeks ago I started to have strong dizziness, tingling hand, and feet, increased fatigue, and nausea. These symptoms last for several days but get...
  10. Hufsamor

    BC-007: Successful drug against Autoantibodies helps with long COVID

    https://www.archyde.com/worlds-first-healing-attempt-at-erlangen-eye-clinic-successful-drug-against-autoantibodies-helps-with-long-covid/?fbclid=IwAR2ytVru3Z2gUS0Z639fFuiUwcXUlJVsLvR-m9lfw7FkMQM5kDlKVkPPrMo Thanks to a drug that was originally developed to combat heart disease, a team of...
  11. ChookityPop

    What autoantibodies and ANAs tests should I do?

    I want to do all the relevant/potential relevant tests I can do. I have POTS and have trouble with blood pooling. I have also had two anaphylactic shocks and have a lot of allergies, so I think I have MCAS. I eat basically carnivore and I think that have eliminated potential anaphylactic...