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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. Tony Mach

    A request regarding the 33 XMRV negative patient samples in Lombardi et al. 2009

    I need to write something about myself first apologizes for that. If you want to skip that, jump right down to the first headline (Lombardi et al. 2009) below. It was sometime around February 2011 that I learned of CFS and subsequently of XMRV. My symptoms were getting worse since 2010...
  2. Tony Mach

    Dr. Andrew Wakefield is suing Brian Deer and BMJ's Fiona Godlee for defamation..

    Well, I actually took the time to look at the talks of Andrew Wakefield before I made my judgement. I was quite critical of the MMR vaccine and shocked after I read about mercury in the vaccines. After looking at both sides (and the anti-vaxx side quite lacking in the fact department) I find you...
  3. Tony Mach

    Is it worth getting CD4, CD8 and HGH tested - likely to provide useful info?

    Do you have gradual or flu-like onset? If it is gradual onset (and maybe if it isn't), have your thyroid checked: T3, T4, TPO. If there is something a little bit strange (say TPO up a bit, but still OK), then check the most common anti-bodies (I think there are 2 out of 4 or 5). Any decent...
  4. Tony Mach

    Zhou et al: Lack of xenotropic MLV-related virus and/or MLV detection in blood donors

    This just leaves one questions for all that believe that XMRV/"HGRV"/WHATEVER is spreading in people: Where are all the healthy carriers?
  5. Tony Mach

    Zhou et al: Lack of xenotropic MLV-related virus and/or MLV detection in blood donors

    What they did was very clever, as far as I understand it. First, they developed a neutralization assay (NT). There are several ways to look if a virus was (or still) is present in a person. You can look for the virus's RNA/DNA via PCR, you can try to culture it. Or you can look to see if...
  6. Tony Mach

    Zhou et al: Lack of xenotropic MLV-related virus and/or MLV detection in blood donors

    I gave each sentence a new paragraph and highlighted one sentence I deemed important. via the CO-CURE mailinglist
  7. Tony Mach

    Antiretroviral Trial

    Hello Sue/Daffodil, is there a summary somewhere what you have been taking (when/how much) and how your lab results and symptoms where affected by it, and what the side effects were. Reading through 1538 posts (now 1539) in this thread is a bit too much for me. If someone could supply a link...
  8. Tony Mach

    My AZT + RAL Trial

    bump Which thread? I couldn't find anything from her about the AZT.
  9. Tony Mach

    New WPI and CDC XMRV sequences in genbank

    So why do you still bother looking into this, if you think that some sort of conspiracy is going to keep all evidence for your thesis from ever being published?
  10. Tony Mach

    Do I have CFS, ME, ICL, or AIDS?

    You forgot one: 51. Because I have a tendency to favor information that confirms my "Non-HIV AIDS" believe, I will as a result gather evidence and remember information selectively, and interpret it in a biased way. (see "Confirmation Bias")
  11. Tony Mach

    Could this really be CFS?

    I find it hard to judge whether the fatigue in CFS is something different than the "tiredness/weakness" you describe. That is one of the main problems of ME/CFS. If your situation is constantly bad and not worsening post-exertional, I would tend to rule out ME, but that is really difficult to...
  12. Tony Mach

    "Researcher Who Studied Benefits Of Red Wine Falsified Data Says University"

    Found here: http://wattsupwiththat.com/2012/01/12/winegate-red-wine-health-researcher-falsified-data/
  13. Tony Mach

    "Mathematician cracks immunity codes"

    Something I have seen, maybe of interest to some. The last sentence makes me wary. But hey, he claims he found something, so everybody look into it and see if he's right. And it was published in the journal Science, so what could possibly go wrong? I think this is the paper (I gave every...
  14. Tony Mach

    Ampligen approval granted extension by FDA

    Supposedly Howard B. Urnovitz has developed an test that can find HIV-antibodies in urine. Maybe he is just an unconventional mind, and I do him injustice. Still, I will not bet the farm (one way or the other), even if I had a farm
  15. Tony Mach

    Ampligen approval granted extension by FDA

    I took a look at Howard B. Urnovitz, PHD, senior manager of Chronix, as I did not have him on my radar before. Oh my. I will just say my quack alarm went off quite noticeable and I will leave it at that. I going not to take statements from Chronix at face value, not until they present...
  16. Tony Mach

    Do I have CFS, ME, ICL, or AIDS?

    I am sorry, but you have almost no idea what you are talking about. Yes, the $6M that go into ME/CFS research is a joke. BUT. No, first of all ME/CFS is not "HIV negative AIDS" as you write to everybody. Not by far. Not even close. Secondly, as a HIV patients you constantly need to be on...
  17. Tony Mach

    Ampligen approval granted extension by FDA

    They had a small test with few patients and it looks like they are checking their results in a larger cohort. This can take some months. Usually then you write up your results, submit them to a journal, get them reviewed, maybe add or change something and then it is published. Under normal...
  18. Tony Mach

    Ampligen approval granted extension by FDA

    In Osler's Web there is some info about how they started in the eighties. As far as I know, back then they had a chance to get Ampligen licensed by the FDA under some relaxed rules, but they choose not to for unknown reasons. They are definitely not a big pharm-company, so they can't put...
  19. Tony Mach

    Ampligen approval granted extension by FDA

    I think it is something they got from the company "Chronix". Last year, I think it was spring, I read something about a sort of "next generation sequencing" or some such. Much marketing talk, difficult to discern what they were up to. They worked together with the university of Gttingen. There...
  20. Tony Mach

    Webb et al 2011: What stops children with a chronic illness accessing health care ...

    That, actually sounds quite critical. But in one of the next paragraph they stress the "lack of empathy", so I am getting mixed signals here. So should doctors better hide what they think, learn to "better communicate a lie", learn to play an dishonest theater? Or should there be a change...
  21. Tony Mach

    Webb et al 2011: What stops children with a chronic illness accessing health care ...

    I thought first: "Gee, what a nice study." BUT. The problem is that the Wessely school is known to operate under the "false illness believe" paradigm and they think it is not helpful to state that (would lead to adverse patient reaction, or some such). If they don't operate under "false...
  22. Tony Mach

    Allergic reaction to food following antibiotics

    As far as I know, microbes are an important part of the gut ("the good bacteria") and antibiotics adversely affects them all, whether good or bad. You should talk to your doctor about getting a quality (medical grade) pro-biotic, to improve the gut flora after the anti-biotics. Another thing...
  23. Tony Mach

    Low Carb diet = protein overload of kidneys?

    If you suspect protein in your urine, you could get urine sticks to test for it. In that case a visit to the doctor would be well advised. But if you changed you diet, your body is probably adapting and this might go away. I had kidney-area pain that was similiar to what you describe...
  24. Tony Mach

    Nature.com Blog: Debate over role of Eppstein-Barr virus in MS reinvigorated

    As both EBV has been implicated in ME/CFS by some, and ME/CFS has been (mis-)diagnosed as MS or atypical MS in the history, the one sentence I highlighted really sticked out for me. My money with regards to MS is on Terry Wahls we'll see, maybe it is the interaction between bad nutrition and...
  25. Tony Mach

    Dr. Bieger and XMRV

    Sorry, the only thing I knew was that Dr. Bieger has used VIPdx and/or WPI for a small study he had done before, which turned out inconclusive (no details on the study design etc.). i know next to nothing about the Heidelberg group. I find this bit of "information" (no even three minutes of...
  26. Tony Mach

    Rituximab or Methotrexate (Mtx) for CFS/ME

    Where do you take that from? Just because there is not enough knowledge about ME/CFS does not mean that we have "cancer". You read WAAAAAY too much into this. And by the way: "Cancer" is a catch all category like "vehicle". There are many many different forms of cancer. The research does...
  27. Tony Mach

    caffeine - an ok indulgence in moderation, or bad for MEers?

    My (preliminary) personal experience at the moment: Up to two pots of black tea per day is good for me helps me get out of bed and through the day. Two cups of coffee per day (and one pot of black tea) is bad for me (increased fatigue and muscle pain). (And damned, I really like coffee much...
  28. Tony Mach

    No XMRV in Sjgren's patients

    Yeah, maybe the few loud "zealots" drown out the broader picture for me. The problem for me is that these voices are lobbying everywhere and they accept only the word of one person: Dr. Mikovits. Everybody else is stupid or a lying bastard. If this were some area of say physics with some theory...
  29. Tony Mach

    No XMRV in Sjgren's patients

    OK, let's play fantasy medical research. Search for Pathogens: 1. Lipkin "deep sequencing" / "next generation sequencing" 2. Enteroviral Capsid Protein VP1 (Chia, Chapman, and others) 3. The research into involvement of HHVs and ERVs (to name only two groups) seems not so promising to me, but...
  30. Tony Mach

    Lipkin Study - more concerns

    No, no, no. We don't "all know" that. First of all I suspect that you mean MLV-related viruses, when you write "MRV". And second of all, you provide no evidence for this supposed common knowledge. Whatever argument you want to make, it fails at your first argumentative sentence. And I have a...