1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Hyperparathyroidism: An Often Overlooked Differential Diagnosis to ME/CFS
Andrew Gladman puts hyperparathyroidism under the microscope, exploring what the disease is, how it can mimic ME/CFS in presentation and how it is treated.
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Dr. Peterson Talks! On Ampligen, Autoimmunity, Pathogens and His New Partnership

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jul 13, 2012.

  1. Cort

    Cort Phoenix Rising Founder

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    I have no idea and Dr. Peterson didn't seem to know either.

    The NIH study was always kind of mysterious but I believe Dr. Peterson was sending patients across to the country to get extensive testing done. I never knew what it was focused on though...As I noted the physician he was in touch with was impressed with just how sick some of the patients were...
  2. Cort

    Cort Phoenix Rising Founder

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    He's said that at various times over the years; he said the same kind of thing to me in 2009 I think, it was, at the HHV6 conference. He's always felt people with ME/CFS have gotten the short end of the stick big time...that they'd been treated really, really poorly and given that really aggressive advocacy was called for...Honestly except in stops and starts we really haven't done that...we haven't had an organization that was willing to organize that kind of effort and we haven't had the healthy people behind us who would have been so helpful....Just look at Mary Dimmock, the healthy mother of a son with ME/CFS; she has made a huge difference with the Stakeholder meeting, the DHHS letter, the MECFS Coalition....she's played a very important role in all of these.....If we had just five or ten more Mary Dimmocks we could really build something....Not to say that its not the patients responsibility but in most disorders I think you have a strong cadre of healthy people leading the charge. - That's emphatically not true in ME/CFS....
    Sing likes this.
  3. akrasia

    akrasia Senior Member

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    How robust a study could it have been if they were prepared to jettison it without a word of explanation? And why was it mysterious?

    As for the impression these very ill patients made on this doctor, where has the NIH been while people, just as sick, or sicker have been allowed to languish and die. Even their responses to this, if not accompanied by major mea culpa and concrete action, are shameful. If they are ignorant, they have been willfully so.

    While you and I often disagree, I do appreciate the information you provide.
  4. Cort

    Cort Phoenix Rising Founder

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    Thanks Akrasia- we have had our disagreements!

    I agree - the federal govt's response to ME/CFS has been shameful, negligent - horrible...there aren't too many adjectives too strong....

    As to the study I really have no idea...it was there and then it wasn't; that doesn't sound too robust does it? Maybe it was a researchers pet project that he got tired of or lost the money for...it never to my knowledge showed up in the NIHReporter which cites funded studies....but then alot gets done with discretionary funds...
  5. Simon

    Simon

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    Yet another fine piece with a huge amount of new information, Cort, thank you.

    I share your optimism that things are really beginning to move in CFS research both individually and collectively. Best of all, people are really getting to grips with the need for robustly defined and measured patient cohorts.

    The PHANU/Peterson link up is a good example of this. Brenu's (a PHANU researcher) work confirming the Klimas/Fletcher finding of diminished Natural Killer Cell Cytotoxicity in CFS was a good study, but its one weakness was in using self-reported CFS diagnosis backed up only by a questionnaire, which unfortunately wouldn't meet the requirement of any published case definition. The hooking up of PHANU's research resources and technology to Peterson's large group of well-categorised patients is a perfect match.

    I'd not hear of CASA before, and great that something has emerged from the SOK quite so quickly. And good that Peterson has been able to persuade Lipkin to extend the range of tissues sampled, which speaks volumes for their relationship and also, I think, shows that Lipkin appears very willing to listen and adapt.

    ps
    I think you might get more readers if you did split it up, say in this case into Ampligen and Other Research. While your writing is very readable, that much text is a bit daunting and chunking it up might make it more accessible.
  6. Cort

    Cort Phoenix Rising Founder

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    Thanks Simon - I think you have a good point about too much text.....Look for more from PHANU on natural killer stuff; they are all over that.
  7. brennan

    brennan

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    Great article, Cort -- thank you. I'm curious about the Chimerix trial. Haven't heard anything about it in months. Is that still going to happen?
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Cort,

    you forgot to ask DrP what the cure is??

    great article, thanks for keeping us updated.

    cheers!!!
  9. dannybex

    dannybex Senior Member

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    Hi Cort,

    Off-topic, but did you notice that on the original page linked above, every reply shows up twice? Makes reading a long article...even longer! :)
  10. Cort

    Cort Phoenix Rising Founder

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    Ah...the Chimerix trial....For now it doesn't seem to be happening..Dr. Peterson said to keep up hope but that he Chimerix seemed to be focused more on other projects. I got the feeling Chimerix kind of drifted away; the project seemed like it was on and then it just kind of never got going. He was hoping they were going to drift back. Hopefully it will at some point...it sounds like a great opportunity and great drug for those with herpesviruses.
  11. Cort

    Cort Phoenix Rising Founder

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    :eek: I keep forgetting to ask him that....I knew there was something I forgot. :) :thumbdown:
  12. coolbreeze

    coolbreeze

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    Cort, a fabulous and well-written article and I so appreciate all that you are doing!! Keep up the great work, you are an amazing man to provide all this information to all of us, thank you! :)
  13. Cort

    Cort Phoenix Rising Founder

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    ...Xenforo problem...please ignore this post...
  14. Bob

    Bob

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    Cort, just to let you know, the quote in your post, above, has 'misfired'.
    The quote in your last post belongs to completely different and random thread:
    http://forums.phoenixrising.me/index.php?goto/post&id=30505#post-30505

    (It's a little befuddling! :confused:)

    I noticed that this happened for you in the comments under another recent article, as well:
    http://forums.phoenixrising.me/inde...nd-implications-for-me-cfs.18172/#post-277037

    You quoted a post from a completely different random thread again:
    http://forums.phoenixrising.me/inde...tion-of-wpi-xmrv-study.1001/page-5#post-28207

    I don't think this is a new phenomenum... I think it used to happen to me occassionally on the previous system.
    The solution is to edit your post, and to re-quote the post that you are responding to.
    That will fix your post, if you can remember which post you were responding to in the first place!
  15. Sing

    Sing Senior Member

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    Thanks, Bob, for correcting that funny intrusion from a posting I had made in 2009--a mouse, indeed! But getting the alert on it did prompt me to read Cort's article and this thread carefully, which feels very important. Thanks, Cort, for pulling together what is happening in the field of research so well, because it helps us respond in more coordinated, intelligent and effective ways both to our individual situations and to this situation at large.

    I have thought of us as like the boxer who has taken a couple of bad head punches but is still trying to hold on in the ring. We may not be able to fight strong anymore but we can try to fight smart.
    Bob likes this.
  16. Bob

    Bob

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    Do you mean you are looking for volunteers for the wiki in general? i.e. setting it up?
  17. Cort

    Cort Phoenix Rising Founder

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    Its happening to me in particular....perhaps because I'm logging into both Wordpress and Xenforo......merging systems together can be problematic...Thanks for documenting what's going on.
  18. Cort

    Cort Phoenix Rising Founder

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    I like the boxer image - getting a bit punchy but still hanging in their and looking for the right opening :)
    Sing likes this.
  19. Cort

    Cort Phoenix Rising Founder

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    We have a very good outline...We need people to work together to figure out a) which wiki we want b) permissions c) which parts of the website should be incorporated into it and how to incorporate it into the Forums/website. We got off to a great start but things have fizzled over the last month and a half...
  20. GracieJ

    GracieJ Senior Member

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    Cort,

    If this shows up twice, I apologize. Had it all written out... Internet timed out, not sure it posted.

    Thanks so much for a great in-depth magazine length article. I enjoyed it. As I am following other things currently, I almost did not read it right away, and further down into the body of the article, my attention was held completely as you mentioned the CDC, biomarkers, etc. I am not sure how it could have been titled to tip me off to other topics within the body of it, and I am not sure splitting it into parts would have been good either! It was good as one intact piece. Maybe a marker at the top as to depth, length, etc.??

    So much information, so little time... a huge semantic spider web that just spills over and grows exponentially daily.

    Thank you for all you do. It is a full-time job just keeping up with YOU and what you have written about ME/CFS. Don't know how you do it...
    CJB and Bob like this.

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