• 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. Ingold12

    Possible CFS with neurological symptoms

    Hi everyone, I'm new to the forum, in June 2022 I got what I presume was a viral illness, with symptoms such as fever, cough, throat pain and slight dysphagia. All symptoms besides the dysphagia subsided until I got tired moving for a new job and, between July and August, I first developed...
  2. N

    Full remission after 7 years of ME/CFS - What worked for me

    Hi all, just wanting to share my success story and how I got complete remission through an intense autoimmune protocol, low-dose abilify, and getting a cold. Full disclosure the doctor who's autoimmune protocol I followed does absolutely make money from books and very expensive consults, but I...
  3. C

    Increased risks of cancer and autoimmune disease among the first-degree relatives of patients with myalgic encephalomyelitis... (Moslehi et al, 2022)

    Increased risks of cancer and autoimmune disease among the first-degree relatives of patients with myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) Abstract Background: Myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) is a disabling multi-system complex disorder with...
  4. 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...
  5. 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...
  6. D

    Starting ivig - concerns

    Hi all, I’ve found a doctor who is willing to try immune treatments for my POTs (based on antibodies), along with other general signs and symptoms suggestive of some sort of strange immune dysfunction/autoimmunity, coupled with a strong family history of autoimmunity on my mothers side. I also...
  7. SWAlexander

    Has anybody access to this article? "Autoimmune Hemolytic Anemias"

    Autoimmune Hemolytic Anemias Hemolytic anemias, which are rare, are often caused by autoimmune destruction of red cells. The hemolysis can be intravascular or extravascular. In general, IgG mediates warm antibody–induced hemolysis, and IgM cold antibody–induced hemolysis. Immunosuppression is...
  8. SeanQHX1

    Opioids and Brain Fog

    Hi everyone again. For about 3 years I've been taking codeine (in the form of co-codamol) regularly every day to get relief from the continuous bombardment of severe brain fog and what I can only describe as horrible head feelings I've had non-stop, getting progressively worse since becoming ill...
  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. Celandine

    Why Women are More Prone to Long Covid (and ME/CFS)

    Good piece in the Guardian looking at various theories. Very applicable to ME, as well. One of the things it says is "Some scientists have already begun to describe long Covid as an oestrogen-associated autoimmune disease..." which is very interesting and not something I've seen mentioned...
  11. SeanQHX1

    Possible Autoimmune Encephalitis

    Hi everyone once again. I'm currently waiting on word to see a neuroimmunologist in the hopes of finding answers after battling worsening, disabling brain and head symptoms for 5 years now which I suspect at this point to have neuroimmune causes. Just now, I continue to deteriorate with this...
  12. V

    What are symptoms of autoimmune encephalitis?

    I have a vague knowledge of it and have seen various posts scattered, so was wondering if those who have been through it can say some more about how it presented in them. Also interested in whether there is any connection to that and, for lake of a better term, (new onset) "neuropsychiatric" (I...
  13. gbells

    Autoimmunity-Related Risk Variants in PTPN22 and CTLA4 Are Associated With ME/CFS With Infectious Onset

    I found some information on genetic mutations that trigger ME when people are exposed to chronic viruses. Previously I shared an article about MTHFR mutations that also do this by impairing folate availability to provide ubiquinol. In this case the proteins made trigger hyper-responsiveness in...
  14. jen1177

    I need to hear from people who've gotten BOTH shots of the covid vaccine

    I had a bad reaction to my first Moderna shot and I'm trying to figure out if I should get the second one. All the articles I've read say the symptoms are worse after the second shot, but I'm hearing anecdotally that some people who had strong reactions to the first shot had lesser reactions to...
  15. M

    Elevated CU index - Autoimmune Mast Cell Disease?

    My new immunologist had me do a test recently called a CU index. I had an elevated result with autoantibodies against IgE. More info on CU index if interested https://www.viracor-eurofins.com/test-menu/2103-cu-index/ From what I understand, the CU index is done for patients with chronic...
  16. SeanQHX1

    Brain symptoms still getting worse - Losing hope

    Hi everyone again. After looking through some old threads, I see that someone previously reported brain symptoms which are exactly like mine and couldn't have put it any better into words. This was after I spent years thinking that I was the only one in the planet with this mysterious brain...
  17. J

    Elevated Vitamin D 1,25 Dihydroxy and Low Vitamin D, 25-OH

    Hello all, I have an abundance of multi-system symptoms that seem to be some sort of chronic version of ME, dysautonomia, autoimmune or other "zebra" type issue yet to be diagnosed. Recently, an endocrinologist that also specializes in Mast Cell Activation Syndrome (a hunch that I had and we...
  18. ShepherdK

    Myalgic Encephalomyelitis/Chronic Fatigue Syndrome as a Hyper-Regulated Immune System Driven by an Interplay Between Regulatory T Cells and Chronic Hu

    Myalgic Encephalomyelitis/Chronic Fatigue Syndrome as a Hyper-Regulated Immune System Driven by an Interplay Between Regulatory T Cells and Chronic Human Herpesvirus Infections Full Text...
  19. X

    Equilibrant/Oxymatrine use: what is seen as autoimmune?

    Is this seen as autoimmune and Equilibrant/Oxymatrine can't be used? Celltrend results: https://forums.phoenixrising.me/threads/severe-ill-case-from-germany.59101/page-2#post-1008617
  20. MariaMagdalena

    Sjogren's Syndrome- Dry eyes, mouth? get this one ruled out, or in!

    Hey everyone! I was going to post this to the forum reserved for alternate or overlapping diagnosis, but there was no heading there for this so I guess I'm putting it into the general circulation. If I missed a more appropriate placement, feel free to move it, mods. I have recently been making...
  21. nyanko_the_sane

    Connecting the Dots with EDS in Managing Pain w/Dr. Pradeep Chopra

    These Posts Have Been Moved from: https://forums.phoenixrising.me/threads/jen-brea-on-whether-some-of-us-might-be-mis-diagnosed-eds-patients.75684/page-2 Connecting the Dots with EDS in Managing Pain w/Dr. Pradeep Chopra Not sure how this great webinar got past us, but I am posting it here...