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

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Search results

  1. I

    Article: A Hitch in its Step: PACE Trial Indicates CBT/GET No Cure For CFS, 60% of Patients Show No

    Response I also think this part of Cort's comments is key: The fact that the treatments were not particularly effective for anyone suggested they were generic treatments that might have produced the same results for anyone with a chronic illness and thus may have said little about the...
  2. I

    Thyroid and Blood Pressure Questions

    Dr. Hyde (a CFS Specialist) has reported finding a high rate the thyroid cancer in CFS patients. Don't mess around with this! Also I traced back through some scientific papers that MuLV's may be linked to Thyroid Cancer (this was prior to the announcement of them being found). Search for my...
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    Retrovirus Positive CFS Patients Show Enhanced Response to Ampligen(R), an Experiment

    Just because they are XMRV -ve doesn't mean that they are MuLV -ve necessarily. It could be that whatever detection they used for this didn't pick up the MuLV CFS patients.
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    CFS patients and families deliver strong message to NIH officials on Sept. 7, 2010

    Thank you to all of the patients for representing CFS suffers. Hopefully this is a first step to educating those who actually have the ability to kick this off....
  5. I

    XMRV and Dr Byron Hyde

    I read this awhile ago and did some thinking about it. If I understand what his point his, he was thinking that XMRV couldn't cause the clusters of ME/CFS that are often seen due to its incubation period. However, one of the papers I found about MuLV's (this was pre-Altar but I still had a...
  6. I

    Its lawsuit time . . .

    IMHO going after the CDC or other agencies at this point is going to have limited results. Maybe down the road once the science is better. Has anyone here been denied disability payments they were due as a result of the illness? My sister did get some after fighting tooth and nail. I have...
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    Dr jan venter

    I wonder if going to the media might not get better results. Again, we would want to make sure the facts are all figured out first. If you hand a reporter a story wrapped in a bow they will ofter run with it.
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    Dr jan venter

    So what we need is to know for sure that they demand patients go to an "information" session before they can see them. If they are doing that they are in violation of the health act and we can do something about it. Is that what happened to you?
  9. I

    Graves' Disease and TH1/TH2 imbalance

    Graves disease seems to be generally regarded as a TH2 dominant disease http://content.karger.com/produktedb/produkte.asp?typ=fulltext&file=NIM2004011004209 Hashimoto’s Thyroiditis is TH1. This makes the whole thing consistent with your observations. If Marco said Graves disease is TH1...
  10. I

    XMRV Workshop Program

    More likely he was told that it is researchers only. If he had just paid and shown up they probably would have let him in :-)
  11. I

    Dr jan venter

    Thinking through it a bit further I do think that if they are actually requiring people to attend an information session (or sessions) and charging for it we should report them. I believe we do need to make sure we have the facts straight and accurate. Frankly, it sounds like a dodgy way to...
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    Dr jan venter

  13. I

    CAA, CDC and Cfs research

    From reading a couple of articles it seems that research (done a fair while ago) showed that MuLV's could be passed through saliva (when mice are fighting for example), sexually and mother's milk in mice. Many mice have genetics such that they are protected from MuLV's. It has been shown that...
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    Dr jan venter

    Ouch... Sorry to hear that he is charging so much. My sister saw him a long time ago (she has been sick since 87) and at that time I don't think he was charging anything (although it is possible my parents paid something and I just didn't know anything about it). Dr Hyams sounds like he...
  15. I

    Possible New Chronic Fatigue Syndrome Drug Investigated

    Given how long it takes a drug to go through the process to stage II they would have started this long before the evidence of a virus started to show up. It could very well be that the recent findings will make this totally pointless. Hmmm... I wonder if I should short their stock :-)
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    Dr jan venter

    I quickly did a bit of research on the other doctor mentioned. At one point he seemed to be fairly impressive. I notice he was involved with Ampligen which WPI is now as well! Here is my source... http://www.ncf-net.org/conference/2000.htm A CLINICAL TREATMENT MODEL FOR CHRONIC FATIGUE...
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    Dr jan venter

    I am in Victoria. I don't have CFS but my sister does. Nothing pisses me off more than frauds trying to take advantage of sick people. CFS sufferes in Canada should be able to get treatment under our health system. It clearly sounds like this clinic is structured to extract money from...
  18. I

    Modes of transmission of XMRV - MRVs

    In Mice MuLV is transmitted in breast milk.
  19. I

    Looking for MuLV's and how they cured them in mice...

    Sorry... I could have done some translating here. The parts I found interesting is that they mentioned the spleen as a "virus factory" which suggests a place to look for MuLV in humans. They also mention using immunoglobulin which has been suggested as a treatment in humans due to the immune...
  20. I

    Looking for MuLV's and how they cured them in mice...

    In case anyone is wondering azidothymidine = AZT which was found to be the best at repressing XMRV I believe.
  21. I

    Looking for MuLV's and how they cured them in mice...

    So far in the distant past it seems like someone did for looking for MuLV's in humans... http://www.cancer-therapy.org/CT6A/HTML/31._Gardner,_285-302.html Too bad they didn't find them then. They did find how to cure them in mice: Contrary to expectations based on the AKR mouse...
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    Modes of transmission of XMRV - MRVs

    Summary of MuLV In mice genetics come into play with whether or not you can get MuLV's. If you have the genetic ability to fight off MuLV's this can be taken away by a co-infection. http://jvi.asm.org/cgi/reprint/83/21/11211.pdf http://www.bioscience.org/u37153137/.../2167/2167.pdf...
  23. I

    New, Improved Project ENOUGH!!! thread

    As I mentioned in my response to that post... Please don't link CFS to Polio Vaccine being the source of HIV. There is no scientific basis for that and it makes us look like loons. I will help with Project Enough as time permits but ONLY if we stick to scientific fact and don't let crap...
  24. I

    How to Attack a Scientific Theory and Get Away With It (Lots of info)

    So IMHO there is no comparison between this issue and XMRV. Worobey et al. 2008 is not a "letter" but a peer reviewed paper based on experimentation and scientific results. If you were to stretch and use this as an analogy for XMRV Worobey would be the WPI using good solid scientific...
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    Article: The Best XMRV Study Underway? Dr. Singh Talks!

    Ritalin is a super stimulant. It is also given to people with narcolepsy. My worry (no scientific backing to this just opinion) is that it would give people with CFS an artificial burst of energy which given that they are still sick would push them to do things their body can't handle and...
  26. I

    Article: The Best XMRV Study Underway? Dr. Singh Talks!

    Thyroid Cancer http://info.cancerresearchuk.org/cancerstats/types/thyroid/incidence/
  27. I

    Article: The Best XMRV Study Underway? Dr. Singh Talks!

    I doubt that they are being medicated for ADD/ADHD. Maybe depression or something else. The symptoms for ADD/ADHD are pretty much EXACTLY the opposite of CFS.
  28. I

    Viology podcast - XMRV special with Singh 8th August

    Again... Patience. The amount of money going to the disease will rapidly increase once/if a link is shown. Until then I actually do understand the caution. If the government threw money at everything that people wanted them to there would be rapidly no money.
  29. I

    Viology podcast - XMRV special with Singh 8th August

    Great podcast. If the virus is there she is going to find it. Looking in various fluids, having cadavers to work from, using multiple test types, etc. shows she knows what she is doing. Also the sample exchange with WPI will stop the whispers for once and all. In many senses the patient...
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    Interesting Articles on Mouse version of XMRV

    Here are a couple more interesting articles showing how the mouse version of XMRV works... Again, take my summaries with a grain of salt. I could have some aspect of the science wrong B Lymphocyte Activation by Coinfection Prevents Immune Control of Friend Virus Infection1 -...