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

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  1. G

    Special Message for you from Ron Davis (video)

    @HTester -- Thanks for the info. I have a question. Ron has indicated that based on his nanoneedle experiments, ME/CFS patients' cells behave fine when in a healthy person's plasma, while both healthy patients' cells and CFS patients' cells "crap out," so to speak, when put into a CFS patient's...
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    False hope?

    If this does turn out to be an immunological disease, the nice thing is we may be able to piggy-back off of new immune modulators that come out for other medications.
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    False hope?

    RA has multiple effective treatments. Parkinson's and MS involve neurological damage, which is a whole 'nuther ballgame. Unless CFS also involves significant permanent neurological damage, it's a very different situation. We are certainly more than a decade away from figuring out how to...
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    False hope?

    The good news is Derya Unutmaz, who got one of the COE grants, has found preliminary evidence of T-cell abnormalities and is going to do more digging with this grant money. I don't know if they're the same findings, but Mark Davis also found T-cell abnormalities.
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    False hope?

    Rituximab is a promising lead and if the phase 3 trial is successful, it should be available pretty soon. Cyclo is a lead, although it would probably only be justified for the bed-bound (and maybe more severe house-bound). Suramin is more tenuous but might work out. If any of these three drugs...
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    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    I believe that is the exact hypothesis Ron Davis and Robert Naviaux are pursuing. Blockways in metabolic pathways linked to danger signaling, without any damage in the mitochondria themselves.
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    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    But it seems like most of us (myself included) feel crappy most of the time, not just after exertion. I always struggle to do physical (or mental) work. The crashes are the worst times, but I never feel normal no matter how little I am doing or have been doing and I think that is the case for...
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    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    And based on his research, Ron Davis thinks glycolysis is shut down. (His findings are mostly unpublished, though.)
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    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    The Norwegians think pyruvate dehydrogenase is being blocked.
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    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    How about your boys in Norway? https://insight.jci.org/articles/view/89376
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    Help! Daughter's university doing flawed study tying parents perceived illness to students neuroses

    Lots of psychologists all over the world are nuts about this stuff, including in the US. They simply have less influence in the CFS research community in the US than in Europe. They're still nuts, just less powerful.
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    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    What do you make of the metabolic studies that have been done so far -- by the Norwegians, Naviaux, Hanson, etc.? Are those consistent with a disorder involving the mitochondria and impaired signaling but not involving defective metabolism per se?
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    Help! Daughter's university doing flawed study tying parents perceived illness to students neuroses

    “Does the thought of a serious illness scare you?” You'd have to be pretty freaking stupid to NOT be scared at the thought of a serious illness... I guess psychologically "normal" people are supposed to say "oh serious illness is totally fine"
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    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    also probably 3 more posts until we get screamed at for going slightly off topic
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    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    I hope so! I thought we were finally getting somewhere with these metabolism studies :(
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    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    Does this mean you don't think it's likely that there is some sort of important metabolic disturbance going on somewhere in the body in CFS?
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    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    Don't you tend to think that what is going on in the brain is effect, not cause? I'm skeptical of the claim by some that this is primarily a neurological disease and that the brain is driving symptoms. It seems much more plausible that what is going on in the brain is an effect of some...
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    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    @Jonathan Edwards -- I don't believe we ever got your opinion on the three projects that got funded. Any thoughts? Anything that looks particularly promising? Anything that looks like a waste of time?
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    Azathioprine

    Hi, @Sidney. What ever happened? Did you come off Imuran? Has it caused any of your symptoms to become permanently worse? I ask because I just got put on it for Crohn's.
  20. G

    Funding for NIH Centers of Excellence?

    pretty sure it's in addition to. I don't have a source, but note that NIH just doled out more money to the UK biobank in addition to funding the COE's.
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    UK ME/CFS Biobank gets large NIH grant

    Hi, all. Please see this thread from Charles Shepherd: http://forums.phoenixrising.me/index.php?threads/breaking-news-uk-me-cfs-biobank-team-receives-largest-ever-grant-to-continue-biomedical-research-pr.54786/ I figured I would re-post it in the news section to make sure everyone saw. I would...
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    Breaking News! UK ME/CFS Biobank team receives largest ever grant to continue biomedical research pr

    also @charles shepherd I suspect more people will see this if it got moved to "General ME/CFS News." Or maybe a thread could be posted there linking to this.
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    Breaking News! UK ME/CFS Biobank team receives largest ever grant to continue biomedical research pr

    @Jonathan Edwards @charles shepherd do you know if this team has any promising leads, since my understanding is that this grant is merely to continue research they've already been doing?
  24. G

    Ocrelizumab?

    Also, if it's impossible to tell how many of these "hidden" B-cells are being destroyed, how are drug companies going to know if the drugs they're developing are actually going to be better at targeting them?
  25. G

    Ocrelizumab?

    Is it safe to assume, however, that drugs that are better at killing B-cells in lymph nodes and the spleen would be significantly more dangerous than Rituximab?
  26. G

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    y u so angry
  27. G

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    you cold as ice
  28. G

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    come on that was a little funny
  29. G

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    no
  30. G

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    I think it is possible to believe all of the below: - All 3 projects that got funded look awesome (I'm particularly pleased with the focus on immunology and metabolomics); - There is not some sort of conspiracy at NIH against Ron Davis or OMF; - This is a big step forward for NIH, for which they...