• 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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

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    Few physical differences found between healthy individuals and those afflicted chronic fatigue syndrome (sciencenordic.com)

    http://sciencenordic.com/few-physical-differences-found-between-healthy-individuals-and-those-afflicted-chronic-fatigue-syndr https://forskning.no/me-virus/norske-forskere-fant-fa-fysiske-forskjeller-mellom-me-syke-og-friske/1344737
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    Gastrocrom or equiv in Australia?

    200mg 30mins before meals 4 x per day is the standard dose. I don't think an inhaler will affect/treat anything outside the lungs, but you'd need to research that to be sure.
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    Jen Brea, Anna Kerr, Dr Heidi Nicholl, Chris Armstrong Aus radio interview/discussion podcast

    Yes I'd be lost without RRR. I too thought the interview and discussion were well done.
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    Jen Brea, Anna Kerr, Dr Heidi Nicholl, Chris Armstrong Aus radio interview/discussion podcast

    Originally aired on 3RRR community radio Melbourne. Facebook post with info https://www.facebook.com/UncommonSenseRRR/posts/1811681535517061 https://soundcloud.com/uncommonsense-rrr/jennifer-brea-unrest-myalgic-encephalomyelitis
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    Review Article: Does the microbiome & virome contribute to me/cfs?

    I haven't fully read this yet so can't offer any comments: http://www.clinsci.org/content/132/5/523 Does the microbiome and virome contribute to myalgic encephalomyelitis/chronic fatigue syndrome? Fiona Newberry, Shen-Yuan Hsieh, Tom Wileman, Simon R. Carding Clinical Science Mar 09, 2018, 132...
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    Mitochondrial and Energy Metabolism Dysfunction in ME/CFS — Myhill, Booth and McLaren-Howard Papers

    Hah oops, that's the thread I meant to post this in! It was the bit about acetyl-coA that made me wonder about the link. I'm also experimenting with supplementing Citrate using citric acid reacted with bicarb (in addition to magnesium and potassium citrate) Cheers :) Cheers, will look into...
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    Mitochondrial and Energy Metabolism Dysfunction in ME/CFS — Myhill, Booth and McLaren-Howard Papers

    Forgive me if this is a stupid question, I'm no biochem expert - but could my recently discovered significant energy boost from eating large amounts of coconut oil possibly be relevant to this discussion? https://nutritionreview.org/2013/04/medium-chain-triglycerides-mcts/
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    Reduced diversity and altered composition of the gut microbiome in individuals with ME/CFS

    Apologies if this is off topic, irrelevant or already posted, but chronic immune activation due to microbial translocation appears to be a feature in HIV patients too http://www.ncbi.nlm.nih.gov/pubmed/17115046
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    Dr. Afrin Webinar

    This MCAS webinar was held recently and is now on Youtube if anyone is interested
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    Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness an

    My book arrived. Now I just have to air it off for a few weeks so I can read it!
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    DAO/Daosin supply issues?

    @Gingergrrl I have an unopened bottle of Swanson Daosin and an opened but only 1-2 tabs used bottle of Twin Labs Quercetin Plus C you are welcome to if you want to pay for shipping from Australia plus the ~$20? cost of the Daosin, if that's of any use to you. Might cost a bit to ship though? Let...
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    DAO/Daosin supply issues?

    I use that other one from Swanson now - which is exactly the same as the ones I also bought directly from Eat - All.com(Sciotec's shop who make/license the Daosin pellets) They are all using Daosin beadlets so my bet is they are the same thing, just without the shellac listed. I'm just not 100%...
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    DAO/Daosin supply issues?

    Does anyone know what is going on with all the DAO products going out of stock at the moment? Looks like there might be an issue with supply of the raw DAO perhaps. Daosin, Histame and others are all becoming unavailable. I see Sciotec, who hold the patent, were bought out last year...
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    FMT (poo pills) released commercially

    NYT article http://www.nytimes.com/2015/11/10/health/fecal-transplants-made-somewhat-more-palatable.html?ref=health&_r=0
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    FMT (poo pills) released commercially

    A lot of people have been waiting for this to happen. http://arstechnica.com/science/2015/11/635-poop-pills-cure-deadly-gastrointestinal-infection/ http://www.openbiome.org/fmtcapsules
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    no start up reactions, just adrenaline and restlessness

    Yep - a lot I know. It seemed to be the upper limit referenced for safe doses. Of course you'd want to be careful and talk with a doctor if you are considering it. It helps my sleep a lot and means I can take a lot of supps that would normally keep me awake and give me bad anxiety.
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    Critterina's Histamine Intolerance Journal

    Hi Critterina - no I haven't even asked yet, I don't think I'm game to try it at the moment! Just don't feel strong enough and living by myself means I don't have the support if it goes wrong. Maybe one day!
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    no start up reactions, just adrenaline and restlessness

    You could consider trying a higher dose perhaps. 300mg wouldn't be enough to have any effect for me, I take at least 20times that amount, basically to gut tolerance. I have to take it during meals to tolerate that amount though, and you need to work up to that amount very slowly to see what you...
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    no start up reactions, just adrenaline and restlessness

    Does it help those symptoms at all ?
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    no start up reactions, just adrenaline and restlessness

    Taurine helps me a lot with similar symptoms.
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    Do I still have ME/CFS if immune deficiency found?

    Thanks heaps for the replies. When I read about MBL deficiency I see things like autoimmune problems and arthritis mentioned, both of which loosely fit for me. But given the lack of solid data for those associations it sounds like I need to focus less on this and stick with the ME/CFS path...
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    Do I still have ME/CFS if immune deficiency found?

    Thanks for the replies :) Maybe I can put it a bit clearer what I'm getting at. If for example the doctors found I had un-diagnosed cancer or MS and that was causing my symptoms, the ME/CFS diagnosis would go out the window no question. Does the still unknown nature of ME/CFS mean that some...
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    Do I still have ME/CFS if immune deficiency found?

    Years and years ago I was "diagnosed" with ME/CFS. Late last year I was found to have an immune deficiency - very low levels of MBL(mannose binding lectin). Doctors don't seem to take seriously or be able to answer my question of whether or not I still officially have ME/CFS now this immune...
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    MTHFR anxiety treatment news article

    Good to see this in the mainstream news: http://www.news.com.au/national/south-australia/how-a-vitamin-cured-my-anxiety-elisa-blacks-story-of-lifelong-struggle-and-new-hope-for-the-future/story-fnii5yv4-1227251037624
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    Critterina's Histamine Intolerance Journal

    Thanks, I think my main concern would be hypoglycaemia, so I would want some supervision if I tried it. Hope you are still seeing improvement!
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    Critterina's Histamine Intolerance Journal

    @NilaJones Do let us know if you notice any changes to food intolerance after doing the fast. Thanks for sharing your experience :-)
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    Critterina's Histamine Intolerance Journal

    You've got me really interested in trying a fast now. Just need to work up some courage.....
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    Sore Kidneys and Methylation

    I've just restated SAM-E (100mg) and have mildly sore kidneys. Urine is foamy also.