• 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. Murph

    My experience on plasmalogens

    I've bought shark liver oil and started taking a couple of tablets a day. the product I got is this one: https://www.beevitamins.com.au/products/costar-shark-liver-oil-1000mg-365-capsules-australian-made Seems like very good value at A$33.50 for 365 1000mg tablets. Took them yesterday and...
  2. Murph

    r/CFS is the biggest shithole I've ever seen

    we all get mad online sometimes. you, me, them. I'll just say that bemsirching the single biggest patient community as a bad group of people - and saying they don't even have mecfs - is a symptom of being mad online rather than a description of reality
  3. Murph

    r/CFS is the biggest shithole I've ever seen

    r/cfs is a different community to r/cfsme and r/mecfs the latter are small outposts of the biopsychosocial model. The former is a very large subreddit. I've been a member there for years, since it had like 1500 members. Now it has 46000. I can guess you got dowvoted for saying the community...
  4. Murph

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome

    They did measure it. That last number, the .74... suggests levels were not statistically important in this small sample. It's the Varible Importance in Prediction and only scores over 1 count as significant.
  5. Murph

    Patients say keto helps with their mental illness. Science is racing to understand why. NPR 2014

    https://www.upr.org/npr-news/2024-01-27/patients-say-keto-helps-with-their-mental-illness-science-is-racing-to-understand-why Patients say keto helps with their mental illness. Science is racing to understand why By Will Stone...
  6. Murph

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome

    yes!! not sure about that. More detail on exactly what they were told would be very useful!
  7. Murph

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome

    The effort preference thing is really vital to understand. it was just a simple computer game. But the only way they got that data to signifigance was by excluding one participant. That participant is healthy volunteer F. I'm going to argue HV F played their silly game close to perfectly and...
  8. Murph

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome

    Since we are all talking about the effort preference, I got the source data and plotted it in full granular detail. First, a replication of the smoothed graph above, with a bit more detail. The downward sloping lines on my chart below are basically the same as the ones on theirs above, so their...
  9. Murph

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome

    When it comes to effort preference the findings seems to hinge on this one test about whether you'd choose to press a button with the little finger of your non-dominant hand 98 times in 21 seconds or prefer to do 30 button presses with your usual index finger, for seven seconds, in return for...
  10. Murph

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome

    This is an interesting wide-ranging paper with two big weaknesses: 1. It began so long ago that it isn't looking at some things that have been shown to be interesting more recently, like monocytes and platelets. it's a fishing expedition, but we've learned some great new fishing spots while...
  11. Murph

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome

    Here's the abstract: Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome Brian Walitt, Avindra Nath Nature Communications volume 15, Article number: 907 (2024) Cite this article Abstract Post-infectious...
  12. Murph

    CD19 CAR T-Cell Therapy in Autoimmune Disease — A Case Series with Follow-up (Muller et al 2024)

    tl;dr: autoimmune disorders are now cured. :o
  13. Murph

    CD19 CAR T-Cell Therapy in Autoimmune Disease — A Case Series with Follow-up (Muller et al 2024)

    CD19 CAR T-Cell Therapy in Autoimmune Disease — A Case Series with Follow-up Fabian Müller, M.D., J Georg Schett, M.D. Abstract Background Treatment for autoimmune diseases such as systemic lupus erythematosus (SLE), idiopathic inflammatory myositis, and systemic sclerosis often involves...
  14. Murph

    WASF3 disrupts mitochondrial respiration and may mediate exercise intolerance in myalgic encephalomyelitis/chronic fatigue syndrome

    I appreciate you putting some context around why you're posting about zinc. it is hard for me to grasp the biological interactions that lead you to think zinc, of all vitamins and minerals, might be relevant. It never hurts to reiterate the full set of conceptual linkages that you are carrying...
  15. Murph

    Social Anxiety being related to CFS

    I was naturally pretty extroverted as a young person. Loved parties. too much maybe. But yep, post mecfs I started hating parties and getting uncomfortable sometimes at them and even beforehand. I have a dexamfetamine prescription and it certainly helps return me to a more extroverted state...
  16. Murph

    WASF3 disrupts mitochondrial respiration and may mediate exercise intolerance in myalgic encephalomyelitis/chronic fatigue syndrome

    Here's another treatment that people already attest to that fits with an andoplasmic reticulum stress model of me/cfs: vitamin d3 https://pubmed.ncbi.nlm.nih.gov/38352211/ 1,25-dihydroxyvitamin D3 affects thapsigargin-induced endoplasmic reticulum stress in 3T3-L1...
  17. Murph

    WASF3 disrupts mitochondrial respiration and may mediate exercise intolerance in myalgic encephalomyelitis/chronic fatigue syndrome

    Hwang is trying to do a trail of relyvrio which includes sodium phenylbutyrate (not sodium butyrate!). that's why we're guessing it's better...
  18. Murph

    WASF3 disrupts mitochondrial respiration and may mediate exercise intolerance in myalgic encephalomyelitis/chronic fatigue syndrome

    Here's an interesting study: These guys got tired of there being a bunch of conflicting studies on UPR in Amyotrophic Lateral Sclerosis and set out to resolve them once and for all with a huge, powerful study done PROPERLY. It brings bad news: science doesn't really understand what the f is...
  19. Murph

    For those of you who are moderate

    I agree with both these! 1. I think the fast/slow thing is about orthostatic intolerance. going fast forces muscles to really contract and send blood back to the heart. it also generates adrenaline and other vasoconstrictors that don't come from slow movement. Now, I can't run or dance really...
  20. Murph

    Daily episodes of blurry vision and pain around eyes

    lots of foods are high in phosphate; googling will turn up a list. As for coke, I've noticed coke zero improves my symptoms sometimes. If I'm out and about and feel fatigue coming on, stopping and having 600mL of coke zero can really turn things around. It could be the liquid, the phosphate...
  21. Murph

    Rewinding your biological age

    I recently read the book Lifespan by the Harvard scientist David Sinclair (an Australian, i always like to see us making a splash on the world stage!). Now, he is overpromising. In some details he is totally full of shit. I recommend this rebuttal. But in other important ways he's right. He...
  22. Murph

    For those of you who are moderate

    My exercise tips: 1. How to choose the right starting volume of exercise. If you're severe, don't. Just rest. If you're moderate or mild, imagine how much you think you can safely do right now. It might be 10 leg lifts or lifting 2kg. Divide that by 10. Start there. The goal is to choose an...
  23. Murph

    For those of you who are moderate

    This is really important. I don't know what substance is building up (or being used up) when we do exercise (possible phosphocreatine?). But we can deal with it better if we rest frequently. This means there's far more capacity for bursts of exercise than sustained exercise. Three ways in which...
  24. Murph

    Daily episodes of blurry vision and pain around eyes

    I had a similar thing where my eyes were periodically blurry. I can give what I think is good news - it's possibel for it to be muscular rather than structural or neurological. When I went to the optometrists they said my eyes were in great heath but the little muscles that are supposed to work...
  25. Murph

    WASF3 disrupts mitochondrial respiration and may mediate exercise intolerance in myalgic encephalomyelitis/chronic fatigue syndrome

    We all have to balance effectivness and accessibility. Sodium phenylbutyrate is undoubtedly likely to be superior at fixing ER stress. But getting it is tricky and it's safety seems less clear. Whereas tudca *should* work at least a bit and is super cheap and easy to get. I'm not ruling out...
  26. Murph

    WASF3 disrupts mitochondrial respiration and may mediate exercise intolerance in myalgic encephalomyelitis/chronic fatigue syndrome

    This paper (wasf3 disrupts ...) stands out in the me/cfs field because it proceeds from observation first. There's lots of work that proceeds from theory, for example the itaconate shunt. And lots of researchers like scheibenbogen who have observations but also a bunch of theory papers that race...
  27. Murph

    Is/was there anyone here who has had cranialcervical surgey?

    @Daffodil did it. made her worse I believe.
  28. Murph

    WASF3 disrupts mitochondrial respiration and may mediate exercise intolerance in myalgic encephalomyelitis/chronic fatigue syndrome

    A side-observation here. They find the me/cfs patient uses up her phosphocreatine quickly and struggles to get it back. s1 is the patient with mecfs, she was tested twice. her recovery constant is found to be 80 seconds compared to 30 seconds in her brother. as the next picture shows...
  29. Murph

    WASF3 disrupts mitochondrial respiration and may mediate exercise intolerance in myalgic encephalomyelitis/chronic fatigue syndrome

    wasf3 is a protein. it is made by a gene of the same name, sure. But its increased production is the problem and that is due to a signal. Something (a virus, a cytokine, er stress, something else) could be encouraging its overproduction. Nobody is saying mecfs is due to a mutation in the wasf3...
  30. Murph

    Bayesian Statistics Improves Biological Interpretability of Metabolomics Data from Human Cohorts (Brydges, Che, Lipkin, Fiehn 2023)

    The results of peroxisome dysfunction are defintiely consistent with some observations made in mecfs. It is possible what we have is lingering viruses fucking with our peroxisomes and creating problems with membrane lipids and mitochondria downstream of that. I'm not saying this is super...