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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. alex3619

    Undenatured whey

    Maybe NAC, not cysteine due to it being comparatively ineffective. It might be cost effective though, I have not examined this. NAC supplies cysteine a lot more effectively though, and is used therapeutically, especially for paracetamol poisoning, though also brain injury and I think some were...
  2. alex3619

    Undenatured whey

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6211803/ Just one of many papers on Immunocal, which has its own cold temperature patented process, and works a lot like NAC in boosting glutathione levels. I picked this one as its available full text, and rodents can be sacrificed to give better...
  3. alex3619

    i think i figured it out (the cause of cfs ) i will pass on the baton

    Unless it requires specific genetic predispositions, several of which have been hypothesized, including IDO2 mutations. These hypotheses are still undergoing testing, we do not know if this valid yet.
  4. alex3619

    Undenatured whey

    I investigated this a long time ago, and even had several long conversations with one of the researchers in Canada, circa 2009 or so. This is not pasteurized, its not heat treated at all. They use some kind of molecular distillation or filter. This was discovered by accident when...
  5. alex3619

    Undenatured whey

    No. I got the same sensation from a blood thinner when I was in hospital though.
  6. alex3619

    i think i figured it out (the cause of cfs ) i will pass on the baton

    PS If it can form part of the numerous abnormal vesicles found in the blood that could be a way it moves around.
  7. alex3619

    i think i figured it out (the cause of cfs ) i will pass on the baton

    Interesting but at least incomplete. It helps to break up long arguments into smaller paragraphs. My first paper on ME was about 2,3 dpg, in 1999, though my primary focus was hypercitricemia. However I was trying to explain why it was low in one study, and later it was shown to be high...
  8. alex3619

    Undenatured whey

    From 1990 or so to 2001 Immunocal gave me the energy to finish my biochemistry degree. However in 2001 I got a very unpleasant side effect, an all over burning sensation, and it was very intense. I had to stop the product, which made the last year of my degree much harder. The timing of the...
  9. alex3619

    Intermittent Ketogenesis

    Intermittent fasting allows people with dietary intolerances to get some of the benefits of keto. Its really hard to do keto if you are salicylate intolerant, for example. I am currently on intermittent fasting to deal with my blood sugar issues. Unlike common wisdom, there is such a thing as...
  10. alex3619

    Antivirals Effective Against Coronavirus?

    This is my biggest concern. The best defence against coronavirus is probably prevention: isolation (stay in your home), avoid crowded places especially planes, handwashing, gloves, eye protection and high grade masks in public are the most obvious preventative measures. Checking with your...
  11. alex3619

    Nanoneedle update: finding what's in the blood

    I see its primary value as a test-bed. You can screen many drugs, as they have done, and all the new drugs as they are developed. However once we focus in on effective treatments, it can be used to titrate doses and refine methods, including dosage protocols. That is invaluable in accelerating...
  12. alex3619

    Low omega-3 index and polyunsaturated fatty acid status in patients with CFS/ME

    No. I prefer not to say who it was, only that they have/had an international reputation, this was a private disagreement.
  13. alex3619

    ME/CFS: Untangling Cytokine Signature

    Some of them last only seconds. I do not expect to see the interesting stuff in arachidonic acid, I expect we need to look for stable eicosanoid breakdown products if we can identify them. I know nothing about current clinical tests. I was involved in this stuff about 26 years ago.
  14. alex3619

    ME/CFS: Untangling Cytokine Signature

    COPD signalling is interesting as I have an undiagnosed breathing problem that can totally shut my breathing down for up to a few minutes. Its either on, or off, though the intensity can be low enough sometimes that I am just struggling to breathe, similar to asthma. The primary risk, for me, is...
  15. alex3619

    ME/CFS: Untangling Cytokine Signature

    I have been warning people about a potential link with PGE2 for decades. Its the primary inflammatory hormone at the tissue level. Indeed I have been saying that our drive to more series 2 prostaglandin synthesis is likely to create deficiency (think salicylate sensitivity) and excess (think...
  16. alex3619

    Alternative to peanut butter?

    Salicylate tolerance is associated with antioxidant status, with better status implying better salicylate tolerance. This is particularly the case for glutathione, which helps regulate the desaturase enzymes. So getting adequate vegetable and fruit intake for antioxidants, plus possibly a...
  17. alex3619

    Alternative to peanut butter?

    Not offhand. Exact measures of salicylate content are not often published, in part because they are variable and too complex to use in simple dietary advice. Many lists do not even contain avocado oil. What we do know, if I recall correctly, is its high, as is EVOO. If for myself I would...
  18. alex3619

    Alternative to peanut butter?

    It depends on dosage in my experience, and dosage tolerance can vary over time. Low constant doses of salicylate can increase tolerance, but over that can still hit you hard. Its just that if you have a low constant intake and accidentally get more you tolerate it better. The reaction is not as...
  19. alex3619

    Discussion about concerns that some dodgy treatments get promoted by patients to patients.

    I have only a limited reading history of Taleb, so I cannot advise you. However I think his books are good. There are at least two things people have trouble thinking about intuitively - exponential growth, and discontinuities. Discontinuities cannot be predicted from trends. They require...
  20. alex3619

    Any recent ME/CFS outbreaks?

    There are lots of family clusters, but as you say there is an issue with timing. However these raise the possibility of a genetic risk factor. Also just because someone is exposed at one time point does not mean it will be a trigger. It might take several exposures to sequentially trigger, or...
  21. alex3619

    Any recent ME/CFS outbreaks?

    What I used to call the two hit hypothesis, or multiple hit hypothesis (since it might not be only two factors).
  22. alex3619

    Any recent ME/CFS outbreaks?

    I am more concerned about a bad batch than the vaccine itself. If this were the case, and they bothered to keep records (very unlikely) then it would be theoretically possible to isolate the batch number and match it to CFS or ME onset. Sadly I doubt there is any interest, or records still exist.
  23. alex3619

    Any recent ME/CFS outbreaks?

    ... or even a bad vaccine batch. Everyone got polio vaccine.
  24. alex3619

    Any recent ME/CFS outbreaks?

    I think this is likely to be the case, which disappears the ME outbreaks. ME was historically associated with polio outbreaks. Of course polio is now mostly eradicated, so this might be another reason there are no more outbreaks. Its important to realise the vast majority of polio patients...
  25. alex3619

    Any recent ME/CFS outbreaks?

    It might be but its more likely its several. However CFS is probably a huge number of illnesses, all lumped together. Certainly there are a huge range of triggering pathogens, though the usual culprits are either EBV or an enterovirus.
  26. alex3619

    Any recent ME/CFS outbreaks?

    I don't think they are reported as ME or CFS outbreaks. They are reported based on the pathogen triggering the outbreak ... such as Q fever or giardia. Yet there is a lot of uncertainty here. There is also the issue that many patients get diagnosed these days that have nothing to do with a...
  27. alex3619

    Berlin Cures Phase II trial

    The problem with them tracking a biomarker is we still do not know if the biomarker is important. This trial will help determine that. So it does not matter if its going down or not, unless its important. The science is not there yet. Treating autoantibodies was also what the Rituximab trial...
  28. alex3619

    Berlin Cures Phase II trial

    Most phase 3 trials fail, and a great many phase 2. It was a comment about the likelihood of success. However, eventually, one such trial will succeed. More will follow. Treatments will enter the market. We just don't know if its this trial, you can never tell before the results are in. You can...
  29. alex3619

    Berlin Cures Phase II trial

    Most such trials fail. They keep failing till one succeeds. Is this the one? From what I read just now it looks like a good candidate.
  30. alex3619

    A 50,000 Foot Overview of Major ME/CFS Theories

    Any theory with a homeostatic basis might explain this. As you push the set point for homeostasis pushes back. However it might be more a strange attractor than typical homeostasis, that is interactions of the disease chemistry keep driving that chemistry to a small range.