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    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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  1. R

    Oxaloacetate Treatment For Mental And Physical Fatigue In Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and… (Cash et Kaufman, 2022)

    It is probably worth digging into the comments on Cort's page on this study https://www.healthrising.org/blog/2021/10/06/oxaloacetate-mitochondrial-supplement-chronic-fatigue-long-covid/ One gem I was directed to was https://psblab.org/?p=618
  2. R

    Oxaloacetate Treatment For Mental And Physical Fatigue In Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and… (Cash et Kaufman, 2022)

    from a quick glance at the paper it would seem that aspartate would be better than malate. They list six metabolomic changes that come from adding oxaloacetate to the mitochondria and one of them is the change in the NAD+/NADH ratio that comes from turning oxaloacetate into malate. So adding...
  3. R

    Could and upset liver be a clue to Me/cfs?

    With the ox bile I was following the advice I was given - to restore the pool of bile then top it up daily to make up for the amount lost in the stool. But I am not sure what is best. I would like to find something that just switched on my liver and made everything work as normal but do not...
  4. R

    Could and upset liver be a clue to Me/cfs?

    Interesting from memory it took a month or so of taking 3 x 500mg ox bile per day.
  5. R

    Could and upset liver be a clue to Me/cfs?

    If people want to supplement to produce bile/ more bile: Dosing with ox bile is a little difficult. You have a circulating pool of bile that is mostly recycled, so the trick is to take a relatively large dose until you get bile diarrhoea and then scale back till you no longer have the diarrhoea...
  6. R

    Could and upset liver be a clue to Me/cfs?

    I have the same problem. Like some above I think that this issue is probably downstream of whatever perpetuates ME/CFS, but it is still capable of causing further damage. Bile is important for both absorbing fat soluble nutrients and disposing of fat soluble wastes. To try to deal with this I...
  7. R

    Pastimes for severe cfs

    audiobooks are a good idea. There are lots of free ones on archive.org https://archive.org/details/librivoxaudio I download them onto an mp3 player and when I am having noise sensitivity issues I listen to them through either noise canceling headphones or noise isolating earphones. If I like...
  8. R

    Does anyone with CFS get back to 100% ever?

    @jaybee00 thanks for the link to the podcast. His comments on stress ring a bell with me, I cannot watch movies for all the reasons I used to like them and only manage the blandest tv if I watch it online and skip all the tense or otherwise emotional bits. And do indeed find stress energizing...
  9. R

    Does anyone with CFS get back to 100% ever?

    I hope so. But I have my doubts. I know that there was a presentation given by Neil McGregor (a biochemist who has been doing me/cfs research since the 90s) in which he said that pwme/cfs were so very different from controls genetically that he thought that they had never in truth been well...
  10. R

    My memory loss is terrifying

    Save by taking notes, I don't know it can be fought. Loss of memory is a loss of self, and it should be galling. Or maybe not. I think terror is probably right at your stage, and that it only becomes galling when you are resigned to it. And I don't know that I am happy to discover that I've...
  11. R

    First migraine ever

    Oh and I should mention that one of the problems in migraines is that the stomach often stops churning so taking soluble paracetamol is perhaps better than a capsule.
  12. R

    First migraine ever

    Migraine is kind of complex, and my experience as a lifelong migraineur may be irrelevant to someone who has only started after getting CFS. I have two suggestions. One is anecdotally at least a lot of migraineurs to find that a ketogenic diet is helpful (something I am doing now). The...
  13. R

    How to create more stomach acid?

    @knackers323 Its pretty much just meat and fat. It follows ration of 2g fat to 1g of protein in theory - in reality the people at Paleomedicina advise using some rules of thumb that should lead to meals with the right ratios. So one is that with muscle meat one can usually say add 35g of fat...
  14. R

    How to create more stomach acid?

    yes you can make it, Myhill has some details here https://drmyhill.co.uk/wiki/Growing_Mutaflor, I just used capsules and a brand of soymilk made with whole beans that already contained glucose. Why the whole beans and not the soy isolate - I really cannot remember, but it did taste better...
  15. R

    Vaccine-triggered CFS linked to nasopharynx inflammation, and 81% cured or improved by treating this nasopharyngitis

    @gbells The Q-tips I used for the back of my throat were the jumbo swabs and they seem pretty robust: I cannot really see them breaking off. I guess it is worth checking to make sure that you don't have shoddy q-tips though.
  16. R

    Vaccine-triggered CFS linked to nasopharynx inflammation, and 81% cured or improved by treating this nasopharyngitis

    do you have any evidence of this @gbells. I was pretty cautious before trying and went to see an ENT first. He considered it to be a perfectly sensible thing to do and did not mention any such risk. And I certainly did not experience anything of the sort after using hundreds of those cotton...
  17. R

    Carnivore Diet for ME?

    Great to hear @Henrik I have had improvement - from being mostly in bed to being mostly in a chair (in good weeks a normal chair, in normal weeks a reclining one)- but not remission. I have also of course been ill for a long time and have lost something like 14kgs lean mass so getting back to...
  18. R

    Connectivity within the brainstem is impaired in chronic fatigue syndrome

    @pattismith what we had was a poster presentation @Marylib has found the published peer reviewed article which is available for free download - you just have to click the download pdf tab at the top of the page.
  19. R

    Vaccine-triggered CFS linked to nasopharynx inflammation, and 81% cured or improved by treating this nasopharyngitis

    To apply it I used 6" "sterile cotton tipped applicators" (they are like one ended long stemmed cotton buds) in my nose and jumbo swabs at the back of my throat.
  20. R

    Potassium supplements vs Gookinaid/homebrew

    I've played around with these things a bit and it depends on your purpose. If you have PoTS and you want to inflate yourself by increasing your blood volume I have found playing around with the WHO oral rehydration solution works best I discussed it here...
  21. R

    Led lightbulbs making my brain fog worse?

    I am a migrainer and find all LEDs and fluorescents a problem (migraine trigger). You may find this site interesting https://ledstrain.org/
  22. R

    Brain inflammation & temperature

    I have not tried this technique but I do find that my symptoms seem to become much worse when I feel inflammation (warmth and tingling sensations) in my face, head or neck, and have found for me that taking vitamin K2 and unbiquinone and being in ketosis helps. Given that it is winter here an...
  23. R

    Carnivore Diet for ME?

    Thanks for the link @skwag it is an interesting podcast.
  24. R

    Carnivore Diet for ME?

    @Lolo I am uncertain about the ribose, but I find that I got it when I read about it on myhill's site, and I find that I desire it most days. I understand what it is meant to do, but cannot point to any obvious change in symptoms. I just know that I desire a small amount most days and...
  25. R

    Carnivore Diet for ME?

    @Hope4 thanks for the links. I recently heard about the Donaldson book on a podcast and have been listening to it (I use text to speech software to read). I think there is an error in the info on the diet for MS page. In a podcast (biohakers lab) I heard a British guy who had used keto to...
  26. R

    Carnivore Diet for ME?

    @Lolo the only carbs I am getting from food come from liver, so I get a little once or twice a week. But I also have about a 5g a day of ribose. Perhaps it is relevant that I am also taking a lot of inositol. Acc Wikipedia inositol is used for a lot of things including fat metabolism. It is...
  27. R

    Carnivore Diet for ME?

    Glad to hear it @Lolo I hope you enjoy it Sorry to hear that things are not going so well for you @outdamnspot
  28. R

    Carnivore Diet for ME?

    Lamb breast is very fatty, The fat is at least as thick as the meat. Or at least I should say untrimmed lamb breast is like this. The fat is mostly on the side that would be closest to the skin.
  29. R

    Carnivore Diet for ME?

    When I am ordering stuff from Woolies or Coles I get the lamb bones and roo mince too. The lamb breast cooking time is so short because the cut is so thin. Anxiety is a powerful motivator. And I was really in a hole when I read that research back in 2016.