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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. firefly

    a fascinating story on Autism

    "]www.huffingtonpost.com/2012/08/27/an-immune-disorder-at-the_n_1833051.html?fb_action_ids=10151196635827938%2C10151181380262603&fb_action_types=news.reads&fb_source=other_multiline&action_object_map={%2210151196635827938%22%3A10151130524949936%2C%2210151181380262603%22%3A10151059696108005}&actio...
  2. firefly

    Now that CFSAC's over, what should we do?

    YES!
  3. firefly

    Now that CFSAC's over, what should we do?

    To elaborate a bit more on this. My sense is that shaming only works when there is a real threat behind it -- major press coverage, possible damaged reputation, ecc. In these cases it can be effective, and yet, even then, it alienates the person or group that has been shamed, who is then even...
  4. firefly

    Now that CFSAC's over, what should we do?

    I like this too! And.... I think it's key for us, as a community, to remember that scoring a rhetorical point that makes the CFS community feel better is easy. The real question is, what will motivate someone to action. It's possible that shaming will do that. But I'm not convinced. As we...
  5. firefly

    Now that CFSAC's over, what should we do?

    One more reason to go for ICC: The biggest source of money right now is from the CFI initiative. N. Klimas is in charge of patient recruitment for those sutdies. I don't know for certain, but I can only assume she is using ICC, or CCC at the very least. This is where we have the most...
  6. firefly

    Now that CFSAC's over, what should we do?

    To sum, we could rehash this till kingdom come. I don't think that gets us anywhere. We really only have 3 basic options: 1) Fully back the ICC 2) Fully back the CCC 3) Lobby for a committee effort to come up with a third, data-driven, definition. But make no mistake: this will take...
  7. firefly

    Now that CFSAC's over, what should we do?

    I may have missed this further up in the thread. Are there any objections to using the ICC creteria developed by Klimas, et all, as published in the Journal of Internal Medicine? This seems like a thorough research and clinical criteria, and a natural rallying point for advocacy efforts. Why...
  8. firefly

    Any news on Lipkin study?

    Could we keep this thread focused on updates to the actual study? It's tough, (albeit, a bit amusing) to have to click on here looking for news of the study and instead have to wade through pages of conspiracy theory talk about Hollywood. Perhaps start another thread on Hollywood...
  9. firefly

    MAF 314, looking for someone to share

    A few folks have mentioned sources before. Could anyone in the U.S. (and East Coast) share where they obtain fresh colostrum? Many thanks.
  10. firefly

    MAF 314

    Hi folks, I will soon begin MAF-314. Could anyone who has done this in the US, suggest what the best source of Colostrum might be? Also, where did you obtain all the jars (which need to be in metric system meaurements.) Thanks! Feel free to PM me if you'd rather.
  11. firefly

    Has anyone tried Mickel Therapy or Reverse Therapy?

    But if you do try it, I recommend going into having decided that you will not get mad when you disagree about what causes the disease. Otherwise, you will likely just get angry; The alternative is to view it as a toolbox: some of the tools in there are quite helpful and would have been tough...
  12. firefly

    Has anyone tried Mickel Therapy or Reverse Therapy?

    I found Reverse Therapy after after having gone to Mayo Clinic for POTs. I had tried Florinef, and had felt terrible on it. I interrupted the Florinef, and found Dr. Palermo, in Connecticut, who trained with John Eaton and is certified to work with RT. I had two in person sessions, each lasting...
  13. firefly

    Has anyone tried Mickel Therapy or Reverse Therapy?

    I've tried Reverse Therapy and found it to be helpful, with reservations. I look at it this way. As far as mind-body medicine goes, it's the best I've found (and works well with yoga and meditation.) What drew me into it was reading about how John Eaton (the founder) started thinking along...
  14. firefly

    MAF 314

    I'd love to chat with someone who has taken or is currently taking MAF 314. If you'd be willing to tell me a bit more about it, could you PM me? Many thanks. Appreciated.
  15. firefly

    The real story about XMRV coming out today?

    Eco, your comments are an important warning, yet I also feel you are portraying a picture of unnecessary doom. The story belongs to all of us. At any point it can be turned around. Our community needs to find a way to stand for its rights, make demands, and yet do so with respect. Martin Luther...
  16. firefly

    Annette Whittemore on Nevada Newsmakers again

    got it. today's link on CFS Central. www.cfscentral.com/
  17. firefly

    Annette Whittemore on Nevada Newsmakers again

    Where is this info coming from? I don't see Levy anywhere on the agenda...or any mention of Science hosting the chat session.
  18. firefly

    Doctor says chronic fatigue syndrome can be cured!?

    What Nielk said. Dr. Enlander has been an amazing doctor. Sober, attentive, realistic, and yet hopeful and encouraging. I'm glad I've had the chance to be his patient.
  19. firefly

    Dosages for GcMAF

    Thanks, Lobba. That's very helpful.
  20. firefly

    Dosages for GcMAF

    Hi all, Another synthesis thread. As I read through the postings, I'm noticing dosing metrics are all over the map: vials, cc's, ml, ng. Can those of you who are taking GcMAF report here on what doses you are taking using the ng (nanogram) metric? (Or if a different metric is...
  21. firefly

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    I'm wading through all this information and wanting to recap where we stand with this. As I understand it there are several options for obtaning GcMAF: 1) www.gcmaf.eu/info/ This GcMAF is being supplied to a number of clinics in Europe. Has anyone tried it privately in the U.S.? 2)...
  22. firefly

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    Lou, I think I started it all by asking about the rumors of "self-assembly" and what they could possibly mean. So, no worries on my count. I think we are all on the same page now. Lobba -- yes, it seems we are using different words to say the same thing. Warmly, Firefly.
  23. firefly

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    I don't believe it's possible to "prepare" onself. Perhaps assemble, or administer, under careful medical supervision. But the formula remains highly complex and proprietary. It seems the bottom line right now is that getting the politics right is going to be a challenge.
  24. firefly

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    The critical question is: how long do you attempt to stay under the radar. Small or large, if the FDA decides it wants to quash something, it will. (See, Burzynski, the movie -- sad, infuriating, hopegiving all at once). Here's hoping the path for MAF 314 is less riddled with law-suits. We...
  25. firefly

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    Indeed. The politics are going to be difficult to navigate. I know prof. Ruggiero will do what is best for patients. I hear what you are saying -- not sure I agree with it though. The cat's out of the bag already. Scrutiny will come whether the trials are small or large. I see no way around...
  26. firefly

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    Yes, just as I imagined. Alas, all that comes into contact with Cheney becomes limited and expensive. I have been suggesting to Dr. Ruggiero that he produce and market the product via other avenues and clinical trials.
  27. firefly

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    Hi Joey, Just to give another anecdotal experience with MAF 314, someone "off the street" (i.e. no prep purification before) tasted one spoonful of MAF 314 and had a massive reaction--almost had to go to the ER with an IRIS response. She had the "real stuff" from the study, so individual...
  28. firefly

    GcMAF trial

    Hi OS, Your version of it is likely the right one. I did not take careful notes on this when he mentioned it, so best to take my recollections with a grain or three of salt. All best, F.
  29. firefly

    Help pls! Scary ER night--Is this an OI thing??

    Hi HTree, For a full autnomic assessment (including tilt-table testing) you could see Dr. Roy Freeman at Beth Israel Deaconess Medical Center. He should be able to investigate other neurological issues too. I saw their office a few years ago and they were very thorough. Good luck. Let us...
  30. firefly

    GcMAF trial

    I was just down in NYC yesterday to see Dr. Enlander. He currently has about 12 patients doing the GcMAF trial. So far (after five weeks) two are doing extremely well, a few others show some improvement, the rest are moving slowly. IRIS has been a factor for some and they have had to lower...