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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. Michelle

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    Is it the same panel of reviewers scoring all 10 of the applications? Or does NIH send the applications to a pool of reviewers, who then score the applications and the applications with the highest scores win? Because it sounds like, as frustrating as it may be, Davis & Co. may have simply...
  2. Michelle

    "These Dangerous ME/CFS Exercise And Symptom Denial Trials Must Come To An End"

    Ah, this makes some sense, I suppose. I've been trying to wrap my head around why Crawley & Co. would do this study. I mean, their form of CBT is not all that different from LP, so I can see why intellectually they would see a certain kinship with it. But the whole point of all these ridiculous...
  3. Michelle

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    It can be difficult to remember that two people can look at the same history and situation and come to very different conclusions. That may mean one person is wrong and another is right (or even both are wrong or both are right), but it doesn't mean one is bad or evil or a stooge or whatever. It...
  4. Michelle

    Chronic fatigue in Ehlers–Danlos syndrome—Hypermobile type

    I suppose the EDS diagnosis has been "lucky" in helping get things like a wheelchair and physical therapy (sorta). However it came at the cost of the medical geneticist who diagnosed me ending the appointment proclaiming "we just need to get you MOVING!" Then proceeded to report to my GP that...
  5. Michelle

    Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS (Fluge et al., 2016)

    Well, there are additional questions. As @nandixon pointed out, there is the question about whether the experience of the opioid subgroup would fit with his theory about impaired S1P signaling. Which was the main question I had. Many of us are puzzled about this response to opioids and would...
  6. Michelle

    Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS (Fluge et al., 2016)

    Hope this isn't too off-topic, but I just wanted to make sure that Tunguska's post way up thread linking to a paper suggesting that opioids increase mTOR signalling didn't get lost in such a long thread given the substantial subgroup of us who find opioids improve functional capacity. Would...
  7. Michelle

    Response to the editorial by Dr Geraghty by the PACE Trial team

    And, of course, when White et al say CBT, they mean something very different from the sort of CBT patients in the survey they cite would be expecting and that patients with any other disease would get. But, as someone upthread says, it takes a lot of time to explain that for the "lay" reader...
  8. Michelle

    Walitt Invited Shorter and Nath Approved Him

    Somebody IS doing a FOI, right?
  9. Michelle

    Whey protein powder to address ME/CFS metabolic issues being identified by researchers - which one?

    Just a note to those in the US, Swanson Vitamins has the Dymatize ISO Whey AND they pay for the return shipping (and give a refund) if something doesn't work. Even if it's open and you've used up half of it or whatever. So a great way to try things out. Godsend if you've got this Damn Disease...
  10. Michelle

    Correspondence in Private Eye on PACE Trial

    Ack! Thanks @Esther12. I'll fix the link in my post. For some reason I kept losing chunks of my comment last night. It's what I get for reading/posting when I was supposed to be in bed! :redface::(
  11. Michelle

    Correspondence in Private Eye on PACE Trial

    I love how White et al say that the data made no difference to their conclusions. Not that they would have used it, but beliefs would have been the better word rather than conclusions. Indeed Simon Wessley used the very word when he told Steven Lubet regarding the PACE trial that "I do believe...
  12. Michelle

    Why is CFS so difficult to detect with standard instrumentation ?

    There are tens of thousands of physiological processes happening at any given moment in the human body. Your doctor has the ability at this point to order tests to measure maybe 50 or so of these processes. A specialist another 50 or so more (I'm almost certainly understating this, but not by...
  13. Michelle

    Postural orthostatic tachycardia is not a useful diagnostic marker for chronic fatigue syndrome.

    In addition to all of the problems mentioned in this thread about this study (a study which says more about the researchers & peer review for the journal than anything about POTS and ME/CFS or SEID), most OI & ME/CFS studies have a difficult time seeing a problem I've noticed in myself and seen...
  14. Michelle

    "Lancet Flubs PACE Letter: Exposes Journal to Ridicule"

    The older I get, the more I believe that doing something for somebody's own good when they don't want you to do it is about the most dangerous motivation possible. I'll take greed and selfishness over do-good-ing any day.
  15. Michelle

    "Lancet Flubs PACE Letter: Exposes Journal to Ridicule"

    This is an issue that I've spent far too much time thinking about the last couple of weeks -- both due to PACE and reading recently a paper published in a reputable social science journal that was also shockingly bad. As a graduate student, I believed that science -- or Science -- was a true...
  16. Michelle

    Naviaux et. al.: Metabolic features of chronic fatigue syndrome

    1.) I can't remember now if someone mentioned this upthread (it's taken me days to read through it all!), but with regard to funding I would think the personalized medicine potential with this technology/data would make it a poster-child for funding through the new Precision Medicine Initiative...
  17. Michelle

    "Once Again, Lancet Stumbles on PACE" (Aug 29) by Vincent Racaniello

    My favorite part of that piece is where, during the GMC inquiry, Horton is asked: I think that really says everything. Horton takes the word of authors over Science. Every bloody time.
  18. Michelle

    Congressional Advocacy Push -- Can you help?

    This is seriously cool, and (fingers-crossed & the sleep gods align the stars right) I hope to call my congressman tomorrow using your helpful script. :) I realize we are starting with baby-steps (which, alas, takes a ton of work in DC for even that), but I'm curious what anyone is saying about...
  19. Michelle

    Occupy M.E. (Jennie Spotila): Fact Checking, Dr. Nath

    In thinking about this a bit more, I'd add an addition (long-winded) thought: @jspotila is making an important point about the need for NIH to include patients in decision-making. It isn't just about being nice to patients (though that would be, well, nice). It's also about the effective use...
  20. Michelle

    Occupy M.E. (Jennie Spotila): Fact Checking, Dr. Nath

    One could argue that until there IS a paradigm shift at the NIH, there will not be appropriate funding. And by paradigm shift I mean no decisions about us, without us. If they could do it with HIV/AIDS research, why not ME/cfs? Why is asking to be included in the design of the study be such a...
  21. Michelle

    Tribunal orders QMUL to release anonymised PACE data 16 Aug 2016

    If I'm reading correctly the Tribunal's opinion (lol and that's always a big IF ;)), I think all we know from Dr. Chalder's comments is that none of the authors of the PACE trial faced anything more than a lone heckler. Sir Simon, otoh, is not an author on the PACE trial and has been the most...
  22. Michelle

    New paper: Progressive brain changes in CFS

    Just adding a big "me too" to this one. Been writing since I was 8. Creating at plot was like breathing. And then about 7-8 years into this Damn Disease it just stopped. I could think of plot scenarios but it would never go further than that. I have notebooks full of story ideas that have...
  23. Michelle

    Opioids in the treatment of ME/CFS patients

    I've been absolutely dumbfounded to hear so many reasonably intelligent people (including a certain ME/CFS writer and former PR member who I otherwise very much respect) repeat such ridiculous nonsense as "opioids don't work." (:bang-head: Emperor. Naked.) For some people, sure they don't. But...
  24. Michelle

    Opioids in the treatment of ME/CFS patients

    @Gingergrrl beat me to linking to the lengthy thread on opioids and their effectiveness for many PWME — it's well worth a read, though I've always been surprised at how little discussion there is in that thread on the role of vasodilation. I'm among those who have found a curious improvement...
  25. Michelle

    Ron Davis at San Francisco rally: very close to a biomarker, looks like a mitochondrial problem

    I would be the first to disregard any comments of mine w/regard to biomechanics of mitochondria but based on my probably woefully inadequate understanding of it all, wouldn't we be having more problems with, say, organ function if mitochondria were the problem? Sorry if that's a stupid question...
  26. Michelle

    Anyone helped by Huperzine & Vinpocetine ?

    My integrative medicine MD prescribed something called Nitric Balance, which has both Huperzine and Vinpocetine as well as a few other things, and I have found it helpful both for a wee bit of energy and with pain. It basically has a vasodilatory effect. The downside about the product (aside...
  27. Michelle

    Mitochondrial muscle research and ME/CFS (Karl Morten et al, University of Oxford)

    @charles shepherd I can't remember the specific study at the moment but I know they've found similar issues post-West Nile virus here in the US of up to 50% of patients. Which for me has always underscored that ME/CFS is unlikely to ever be pathogen-specific but something that occurs as a...
  28. Michelle

    How To Explain CFS

    I've tried MMJ a couple of times but have only found it slightly helpful -- and costly for that little bit! I'm in Oregon and have a cannabis shop across the street. I may give it another shot with some edibles but have to talk w/my PCP first as I'm on opioids and don't want to risk losing my...
  29. Michelle

    Mitochondrial muscle research and ME/CFS (Karl Morten et al, University of Oxford)

    @charles shepherd Thanks for the presentation. Unfortunately the sound quality was rather poor so I apologize if I'm simply restating a comment you made but I mis-heard! One of the issues discussed was the lack of funding for ME/CFS research, and Dr. Morten made a comment about the Gates...
  30. Michelle

    How To Explain CFS

    I usually explain it as having the flu but that it never goes away, on top of a constant hangover and jet lag. In my specific case, I add "while being slowly electrocuted" as I also have severe, widespread electric, burning like pain that may or may not be due to this disease or may be...