• 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. A

    MCAS activated by Long COVID or by Vac: CRITERIA FOR CLINICAL DIAGNOSIS. Also for ME/CFS, Fibromyalgia, MCS, POTS, EDS, RLS,SNF, Autoinmune Diseases

    MCAS (episodes of symptoms of histaminosis/anaphylaxis) activated by Long COVID or MIS-C or by Post-Vax Syndrome: CRITERIA FOR CLINICAL DIAGNOSIS. https://www.researchgate.net/publication/377384635 Also for ME/CFS, Fibromyalgia, MCS, POTS, Dysautonomia, Ehlers-Danlos Syndrome (EDS), Small...
  2. BaileyBeached

    Urolithin A effects particularly in MCAS and cci

    Hi everyone, I have mitochondrial dysnfunction as well mcas, cci, ijv compression, Lyme and severe dysautonomia. Urolithin A was recommended to me for mitochondrial issues, and I saw a paper saying it also boosts collagen production and a posts here or there saying it seemed to help floxed...
  3. JasonPerth

    MCAS Treatment

    Hi All, I have found this super easy to read paper about MCAS treatment, i believe it was shared by a Doctor in US familiar with MCAS and how to treat it. As you go through the pages it actually has alot of natural benifits for a range of other symptoms aswell. Ofcourse our MECFS bodies while...
  4. G

    Stomach Decline in Extremely Severe ME/CFS

    Hello. I am a FT caregiver for my daughter, who’s in her early 30s and has suffered from ME/CFS for four years (the past two years severe, and the past 9 months extremely severe). She got sick after a virus in 2019 and has been in a gradual decline since. She’s been housebound since the end of...
  5. W

    beta blocker allergy

    I do not know what happened however after my decline in health started then I prodce allergies to different drugs , herbals, foods. beta blockers are one of them . I need to use them cuase I got arrythmias mostly tachcarydia however they give itching and red spots. Is it a sign of MCAS? I have...
  6. T

    Quercetin metabolism, sulphur

    Hi all! I’m very confused and hope someone can help me. I really would like to take Quercetin for my MCAS but I also have hydrogen sulfide Sibo which causes sulfur intolerance. There’s conflicting information regarding quercetin becoming metabolite of sulphur in the body. When I message...
  7. chilove

    What could be causing sudden new symptom of weak and burning, aching muscles in my legs?

    Looking for suggestions on what could be causing a recent and sudden new symptom: Aching and burning and sore muscles in my legs? It started with my left knee suddenly giving out while I was walking but it didn't hurt, my knee would just sort of buckle. Then it progressed to that knee getting...
  8. chilove

    Increased viral symptoms with antiviral treatments/supplements?

    Hi all, my integrative medicine doctor recently did some testing and found out that I have an active case of re-activated EBV. She had me start on a few different supplements for it including Monolaurin (Which I was already taking 3 times per day) Lysine Zinc Des Bio homeopathics Byron...
  9. SWAlexander

    Long Covid + Histamine / MCAS - Dr Tina Peers in conversation with journalist Nicola Haseler

    Full interview with Dr. Tina Peers on a possible cause of Long Covid symptoms.
  10. SWAlexander

    Persistent Antiphospholipid Antibodies, Mast Cell Activation Syndrome, Postural Orthostatic Tachycardia Syndrome and Post-COVID Syndrome: 1 Year On

    Abstract This is the first case report of a patient with post-COVID-19 postural orthostatic tachycardia syndrome (POTS) with multiple persistent antiphospholipid antibody (aPL)-positivity more than a year after illness onset who also meets Global Consensus-2 criteria for mast cell activation...
  11. frozenborderline

    Evusheld, long lasting aspects, and possible side effects

    At this point I don't think evusheld or novavax are terrible risks compared to other immunization treatments against covid, or compared to effects of covid itself. However I do worry about one thing. i should like to ask an immunologist or a knowledgeable patient about this: if evusheld, the...
  12. frozenborderline

    Headless youth podcast Origin Story Part III--my experiences with CCI diagnosis, the history of Lake Tahoe and Environmental illness

    Listen to Origin Story Pt. 3 by Headless Youth Podcast on #SoundCloud https://soundcloud.app.goo.gl/pHvgT
  13. frozenborderline

    Immune problems, covid, and waiting for the right vaccine

    I can't feel safe going out to appointments, which I desperately need for a number of things, until I'm somewhat immunologically protected against covid. I'm unvaccinatd. I have seen what the mrna vaccines risk doing to people with severe ME and mcas. On the other hand I believe covid is...
  14. SWAlexander

    Mast Cell Activation Syndrome (MCAS)

    Mast cells are found throughout the body and play a complex and critical role in immune response and keeping people healthy. However, when these cells become altered or activate inappropriately to specific triggers, they can create symptoms throughout the body. While mast cell activation...
  15. frozenborderline

    An Open Letter to the Open Medicine Foundation, by Kaylin Jones

    https://openletteropenmedicinefoundation.com/an-open-letter-to-the-open-medicine-foundation-by-kaylin-jones/ Another person asking the OMF to look into mold or environmental toxins in ME/CFS. So far they haven't responded. But lets keep trying. If anyone else has experienced environmental...
  16. frozenborderline

    Hellmouth (a story about being in hell)

    https://atomicchesterton.blogspot.com/2022/02/hellmouth.html?m=1 This was previously published in lit mag softcartel. It's based on composites of dreams and real experiences that come from the truly hellish experience of severe ME/CFS I think it's a pretty good story and maybe a realistic...
  17. frozenborderline

    What outlets do we have to publish pieces of art or writing about this illness and theology or spirituality, or just any art about it?

    What outlets besides our own blogs can we publish art specific for ME/CFS peolle or people with chronic illness? Omf rejected a poem I wrote for supposedly being too dark, it made me very sad and made me think I cant really connect with people in the me/cfs community. Bc this particular poem...
  18. 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...
  19. I

    Lactoferrin dosage

    Hi, does anyone know how often Lactoferrin should be taken in order to inhibit tryptase? Thanks
  20. V

    Mast Cell Activation Syndrome and Long Co

    Not sure if anyone has posted this paper https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8459548/#__ffn_sectitle
  21. SWAlexander

    Should There be an Increased Focus on Lipedema, the Lymphatic System, and Adipose Tissue Fibrosis in Ehlers-Danlos Syndrome, Fibromyalgia and ME/CFS?

    Article Along with fatigue and nausea, pain has been one of the defining symptoms of my daughter’s illness. After she was diagnosed in 2018-2019 at age 14-15 with hypermobile Ehlers-Danlos syndrome (EDS), chronic fatigue syndrome (ME/CFS), craniocervical instability, Chiari malformation, occult...
  22. SWAlexander

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

    Abstract Mastocytosis is a hematologic neoplasm characterized by expansion and focal accumulation of neoplastic mast cells (MC) in diverse organs, including the skin, bone marrow (BM), spleen, liver, and gastrointestinal tract. The World Health Organization classification divides the...
  23. frozenborderline

    I have Hereditary Alpha Tryptasemia , what does this mean for my care?

    I have long had sensitivities to things like mold and outdoor toxins such as Mystery toxin Hell toxin Cyanobacteria Fire Retardant Associated Toxin There was always a lot of crossover with ME/CFS as being in good air helped my PEM and energy envelope more 5han any other treatment and...
  24. frozenborderline

    How do i get my doctor to pay attention to my case and be less scattered and more responsible ?

    I found an amazing immunologist and mast cell specialist. I thought "since my current me/cfs specialist is too scattered to help me well, this doctor should suffice, and maybe she can lead a bit more in treating my case rather than me having to do a lot of the steering". Well, our first visit...
  25. Sherpa

    Getting Over Post-Vaccination Flare

    Hi Friends, I got the Moderna vax second shot 17 days ago and I am still feeling a post-vaccination flare. I had been completely recovered and working full-time and exercising hard for past 3 years. I had nearly forgotten about CFS. The vaccine has temporarily thrown me back into a world of...
  26. Aspen

    MCAS elimination diet: tips and tricks?

    Hey folks, here’s a place to post your MCAS safe-food wisdom! I’m finally starting to get a handle on my MCAS food and skin product sensitivities… it’s blowing my mind how many things I react to, but also how much better I can feel when I stick to safe foods/products. While I’ve heard folks...
  27. Sherpa

    Palmitoylethanolamide (PEA) to deactivate mast cells

    Friends, I have been suffering from an intense mast cell activation flare due to the Moderna Covid vaccine. While researching treatments into MCAS, I came upon an blog talking about how both CBD and PEA (palmitoylethanolamide) reduce mast cell activation. It quotes: PEA reduces mast cell...
  28. frozenborderline

    Seeds of some ideas: art and movies that relates to ME/CFS

  29. H

    Problems with Mast Cell stabilizers

    So I'm at my wit's end a bit this evening. I'm currently on a plan from my MCAS doctor to take Mast Cell stabilisers in the hope it calms my symptoms, but I've just tried a new one (Ketotifen) and I'm reacting badly to it, and I'm wondering what to do. The background to this is that initially I...
  30. frozenborderline

    My grand theory of etiology part II

    I've posted my unifying theory of etiology before. But part II is not quite done yet, however it has a lot of the parts there, just not all there, and not assembled properly or in order, so I've decided to kick off working on assembling it by posting about it here. None of the parts by...