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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. nandixon

    An Isolated Complex V Inefficiency and Dysregulated Mitochondrial Function in Immortalized Lymphocytes from ME/CFS patients 9/2019

    @wigglethemouse, I'm hoping to post something fairly soon. I've been very short of extra energy the last few weeks from having to exert myself physically much more than usual due to a drought on my property and moreover because of some eye surgery that went wrong and that won't get fixed for 2...
  2. nandixon

    An Isolated Complex V Inefficiency and Dysregulated Mitochondrial Function in Immortalized Lymphocytes from ME/CFS patients 9/2019

    Just cross-posing the following, since the Ciregia study supports Fisher's findings:
  3. nandixon

    Comparison between four studies on energy metabolism

    The findings of the 2016 Ciregia study (full text here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5048217/) have now been essentially validated to a fairly good extent with respect to ATPB, which is also known as ATP5B, a subunit of ATP synthase (aka Complex V). In Paul Fisher's recent study...
  4. nandixon

    Sudden Supraventricular Tachycardia Attacks

    Yes, you'd want to see a cardiologist and confirm that's what it is, by wearing a 24-hour Holter monitor, for example. In my case the SVTs, which were quite bothersome and interfered with falling asleep, were treatable with coenzyme Q10 (CoQ10). They were initially kept at bay with 150 mg which...
  5. nandixon

    An Isolated Complex V Inefficiency and Dysregulated Mitochondrial Function in Immortalized Lymphocytes from ME/CFS patients 9/2019

    I'm reposting a post below which I posted on another thread because this is where it actually belongs and because I'm going to be following up shortly when I have more energy about the problem I noted in the "Edit 2" at the bottom of the post. (That upregulation of ATP5B that Dr Fisher found...
  6. nandixon

    ME/CFS Variant Spreadsheet with Frequencies, CADD scores, Variant Effect Prediction, etc (Citizen Science)

    @kday, The openSNP sample size for the ME/CFS patients is probably much too small to be able to make any statistically meaningful associations for genetic analysis purposes. There is however another ME/CFS dataset you might be able to use: The data that Klimas gathered for the study of this...
  7. nandixon

    Third Annual Community Symposium on the Molecular Basis of ME/CFS Sponsored by OMF - DISCUSSION

    GABA doesn't generally cross the blood brain barrier and so doesn't seem too likely to help for sleep when taken orally.
  8. nandixon

    ME/CFS Variant Spreadsheet with Frequencies, CADD scores, Variant Effect Prediction, etc (Citizen Science)

    @kday, I believe everyone should be GG for that one. OpenSNP is suggesting that 23andMe apparently had a number of no-calls for that SNP, so I think that may be why the allele frequency for the G allele (i.e., the normal allele) in the spreadsheet has the appearance of being so low for the...
  9. nandixon

    Third Annual Community Symposium on the Molecular Basis of ME/CFS Sponsored by OMF - DISCUSSION

    @skandar, Your intuition may very well be correct. Yes, surely it would have been tested early on given Whitney's positive response to it. The Seahorse experiment is the only thing I've seen as well.
  10. nandixon

    Suggested Pathology of Systemic Exertion Intolerance Disease: Impairment of E2/E3 Subunit of PDH

    @Learner, No, that paper is not wrong, but all of the effects of alpha-lipoic acid he is talking about never actually occur in humans (at least not to any appreciable extent) unless ALA is actually supplemented. He sort of says that at the end of the paper, although in a sort of obfuscated way...
  11. nandixon

    Suggested Pathology of Systemic Exertion Intolerance Disease: Impairment of E2/E3 Subunit of PDH

    @sb4, I'm not sure how well taking extra caprylic acid can drive the formation of ALA (it might not be very rate limiting). It may be your just getting one of the effects of using medium chain triglycerides in general, although I think caprylic acid has some other specific effects as well. I...
  12. nandixon

    Suggested Pathology of Systemic Exertion Intolerance Disease: Impairment of E2/E3 Subunit of PDH

    @Learner1 Glad you brought this up. The authors of the study, as well as Genova, have a very common and widespread misunderstanding about the nature of alpha-lipoic acid. (In fact, Genova has been essentially providing the same wrong information about ALA for going on at least 20 years now as...
  13. nandixon

    What if every patient would „just“ give 50 dollars to ME/CFS research? We have to step up!

    Yes, both him and Maureen Hanson. So in that case I think they need to get together ASAP and do what I mentioned a couple days ago, and not be dragging things out anymore by working mostly independently and by following the far too slow traditional scientific method:
  14. nandixon

    Third Annual Community Symposium on the Molecular Basis of ME/CFS Sponsored by OMF - DISCUSSION

    @Rufous McKinney Yes, it's possible that a drug could correct the signal but actually have no effect or even a bad effect on the patient. The bad effect might happen either because of general side effects or because the manner in which it corrects the impedance signal (by normalizing...
  15. nandixon

    Third Annual Community Symposium on the Molecular Basis of ME/CFS Sponsored by OMF - DISCUSSION

    The best possibility I could come up with for how Ativan (lorazepam) might be helping in ME/CFS is that it strongly binds to a receptor that is primarily located in the outer mitochondrial membrane called the translocator protein (TSPO), formerly called the peripheral benzodiazepine receptor...
  16. nandixon

    Third Annual Community Symposium on the Molecular Basis of ME/CFS Sponsored by OMF - DISCUSSION

    See this thread for Fisher's study: https://forums.phoenixrising.me/threads/an-isolated-complex-v-inefficiency-and-dysregulated-mitochondrial-function-in-immortalized-lymphocytes-from-me-cfs-patients.77577/ Fisher seems confident that the results of the study of that thread are going to lead...
  17. nandixon

    Third Annual Community Symposium on the Molecular Basis of ME/CFS Sponsored by OMF - DISCUSSION

    @Inara, I'm pretty sure Whitney would be diagnosed with catatonia by most medical professionals familiar with that condition. Mutism, not eating and, of particular importance, a rapid response to Ativan, all of which apply to Whitney, are essentially diagnostic for catatonia. Most people think...
  18. nandixon

    Third Annual Community Symposium on the Molecular Basis of ME/CFS Sponsored by OMF - DISCUSSION

    Yes, that was partly why I did the exercise of showing how everything *might* fit together. Note in particular in the hierarchy of findings that Fisher's finding of ATP synthase impairment might be the most immediate cause of the mitochondrial fission that Prusty found. This means that even...
  19. nandixon

    Third Annual Community Symposium on the Molecular Basis of ME/CFS Sponsored by OMF - DISCUSSION

    Here's a theoretical hierarchy of 'what may be causing what' in ME/CFS based on supporting scientific literature and the findings so far (with the associated researcher in parentheses): Pathogen such as HHV-6A (Prusty) ---> Exosome containing microRNA (Ron Davis & Prusty, the 'something in the...
  20. nandixon

    Third Annual Community Symposium on the Molecular Basis of ME/CFS Sponsored by OMF - DISCUSSION

    Yes, I did a post a couple weeks ago on using SS-31 on the thread for Dr Fisher's ATP synthase (Complex V) impairment finding here...
  21. nandixon

    Third Annual Community Symposium on the Molecular Basis of ME/CFS Sponsored by OMF - DISCUSSION

    I'm just putting this out very quickly as it is quite late. There is a very interesting and potentially very exciting connection between Paul Fisher's work[1] showing an impairment in ATP synthase in ME/CFS immortalized lymphocytes and Bhupesh Prusty's work[2] showing increased fission (and...
  22. nandixon

    Turmeric/Curcumin poll

    You have to understand that the very same polyphenolic portion of a molecule, i.e., a phenyl ring with multiple hydroxyl groups attached, that enables it to scavenge peroxynitrite is the very same part of the molecule that also binds to ATP synthase and inhibits it.[1] So it is quite likely...
  23. nandixon

    What if every patient would „just“ give 50 dollars to ME/CFS research? We have to step up!

    That is possible, but we know from how unreproduceable virtually all of the studies to date have been that at least some attempt now needs to be made to go beyond categorizing patients for research purposes based simply on symptoms alone. One definition of insanity is doing the same thing over...
  24. nandixon

    What if every patient would „just“ give 50 dollars to ME/CFS research? We have to step up!

    At the present time, I would only give money that can be specifically designated for use in discovering what the "something in the blood" is. If this disease was ALS, and it had been found that something in the blood plasma of ALS patients caused healthy cells to have ALS characteristics, can...
  25. nandixon

    Turmeric/Curcumin poll

    You might have missed the most important part of what I wrote so here it is bolded: To give you a visual, below are just some of the polyphenols that by 2010 had been found to inhibit ATP synthase (Complex V). And curcumin and numerous other polyphenols which have also been found to inhibit...
  26. nandixon

    Mitochondrial and Energy Metabolism Dysfunction in ME/CFS — Myhill, Booth and McLaren-Howard Papers

    "The idea was that Dr Myhill would take blood from one patient and send samples to both laboratories to be tested on the next day. Dr Myhill offered to fund the cost of such a comparison." A single patient analyzed by the two groups is not good enough. Blinded amples need to come from multiple...
  27. nandixon

    Mitochondrial and Energy Metabolism Dysfunction in ME/CFS — Myhill, Booth and McLaren-Howard Papers

    Yes, I would really like to see blinded samples of patients and healthy controls sent to the Acumen people to see if they can correctly discriminate between the two just to make sure there's not some hidden little detail that Acumen does that Karl Morten's group isn't aware of that actually...
  28. nandixon

    Turmeric/Curcumin poll

    Yes, most of the many naturally occurring polyphenolic compounds, including also quercetin and resveratrol in addition to curcumin and the two you mentioned (i.e., rosemary = rosmarinic acid, and cinnamon = derivatives of cinnamic acid) are inherently capable of scavenging peroxynitrite (which...
  29. nandixon

    Turmeric/Curcumin poll

    Curcumin can be a great antiinflammatory but will be a disaster for some people with ME/CFS because of its negative effect on ATP production. It's what's known as an "uncoupler" because it inhibits the mitochondrial enzyme ATP synthase (Complex V) and prevents that enzyme from making use of the...
  30. nandixon

    Third Annual Community Symposium on the Molecular Basis of ME/CFS Sponsored by OMF - DISCUSSION

    I think it's almost certainly going to be the case that a number of other diseases are also going to give a similar impedance signal. But that's okay because it's not important that the nanoneedle be able to be a diagnostic tool to differentiate diseases. It just needs to be used as an...