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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. J

    PatientsLikeMe doing a CFS/FMS survey for Petrie (major psychobabbler)

    Patientslikeme.com lives by people using it. I suggest writing to their researcher (Michael Massagli), politely informing him of your objections to this sort of pseudo-scientific research. What will really get him concerned is if you say that you, and everyone you are in contact with will stop...
  2. J

    Dr. Cheney comments on a you-tube video about his poster at the XMRV Workshop

    I can't claim to be very knowledgeable, but I believe that is exactly what Cheney is postulating - that CFS is (at least partially) an adaptive response to an infection. Those who have XMRV/HGRV/whatever but don't have CFS are more likely to develop cancer than those with CFS, whose immune...
  3. J

    Article: A Time To Act!

    "The new HIV - and 7% of us may already have it." Playing fast and loose with facts, but headlines are about grabbing attention, not being 100% accurate.
  4. J

    Cheney Clinic positive XMRV/MLV/HGRV study??

    I believe he has been using VIP Dx.
  5. J

    I think my CFS is gone....back to work?

    I'm afraid I agree with all the advice above about being careful, even if you get a long period of time where you feel 100% better. I too had almost complete remission that lasted 6-8 years followed by various crashes. One thing I would add to the advice about avoiding stress is BE CAREFUL...
  6. J

    Article: Four Viruses! Alter Paper Confirms Retroviral Findings in CFS

    I respectfully disagree. Correcting misinformation can be respectful or disrespectful depending on how it is done. I don't think anyone is ever persuaded by inflammatory rhetoric. It just turns the debate into partisan point scoring which is neither informative nor useful. There are a set...
  7. J

    Article: Four Viruses! Alter Paper Confirms Retroviral Findings in CFS

    And me. Please stop posting these aggressive attacks on Cort. People come here to read his reporting, not your self-important posturing. If you want to contribute to the debate, there's no reason why you can't do so in a respectful and objective manner.
  8. J

    Supporting the WPI from Australia

    I was able to obtain sickness benefits in Australia after being diagnosed with ME in the 1980s. I have no idea what the situation is currently since I've been fortunate enough to be able to return to work. It's certainly true that most GPs are able to offer little help here, but I haven't...
  9. J

    Supporting the WPI from Australia

    It's certainly not a well thought out statement from a careful researcher. However, it's possible his actual talk was more nuanced. The slides may be giving an unfair impression of the actual speech.
  10. J

    Supporting the WPI from Australia

    Reading further, I'm pretty sure that talk was from a previous year. Oddly, I can't see the year mentioned anywhere but someone has written a summary of it, so I assume it has already been given... Maybe he would be less categorical were he to give the talk now?
  11. J

    Supporting the WPI from Australia

    This is kind of getting a bit off topic, but I notice from Andrew Lloyd's slides, in the link Melodie posted earlier, the following statements: CFS is not: a muscle disorder a psychiatric disorder a retroviral infection an auto-immune disorder a sleep disorder a metabolic disorder...
  12. J

    You may wonder why the CAA treats XMRV the way they do... So:

    Nice post Michelle, thanks for spending the energy to write it.
  13. J

    Supporting the WPI from Australia

    Can a locally registered charity fund research efforts in another country?
  14. J

    Supporting the WPI from Australia

    I would love to donate to help the WPI. I live in Australia and my accountant has told me that only locally registered charities are tax deductible. It may seem like a small thing, but in the long run tax deductible status can make a big difference to charitable giving. I'm wondering if...
  15. J

    Lyme Dr in Australia

    This article appeared in the SMH earlier this week. It seems that some people do think Lyme is in Australia. It also references a GP who says he is treating several Lyme cases. http://www.smh.com.au/nsw/court-grants-lyme-disease-autopsy-20100719-10hyx.html
  16. J

    xrmv testing- australia

    Hi Zoe, I think Andrew probably addressed a lot of your question - i.e. how to get the test ordered in the US if you can find an Australian doctor to request the test for you. If you want to see Dr Cheney, he will just draw the blood and mail the sample in from his office since he keeps the test...
  17. J

    xrmv testing- australia

    Zoe, I travelled to the US to see Dr Cheney and had the WPI XMRV test done as part of that visit. It's a very expensive way to get that test done though as Cheney charges a lot for consultations. Also, you will have to go to North Carolina. I'm sure you can find other US doctors who will...
  18. J

    Stem Cells

    So, it's an unsubstantiated rumour then.
  19. J

    Stem Cells

    It seems odd to be complaining about a "gag order" that you don't actually know exists. What makes you believe that Dr Cheney would impose any such thing on his patients (not that I even believe such a thing is legally possible)? Perhaps they simply don't want to discuss their personal medical...
  20. J

    possible letter to the Australian Health Minister

    Hi Alex, I think you (we) should try to get Get Up (http://www.getup.org.au/), the advocacy organisation, interested in this issue. They have tremendous experience and skills mobilising people around issues that they consider important. They are currently campaigning around mental health...
  21. J

    good news clip of judy m explaining how we get sick from xmrv

    I think the only way that the public is really going to get interested in this topic (and thereby generate political pressure for more research money) is through threats to public health and that means discussion of transmission. Breast-feeding, blood transfusions, sexual transmission and...
  22. J

    Experiences with Clonazepam

    D-bex, what makes you suspicious of the Klonopin in particular regarding your anemia/leukopenia? Is it something there is any published literature on that you know of?
  23. J

    Experiences with Clonazepam

    It might be of some small comfort to know that Dr Cheney recommends Klonopin highly, both for its sleep inducing properties and its neuro-protective effects. When I saw him recently I asked him if he was concerned about the potential problems of benzo addiction and he pointed out that...
  24. J

    XMRV Article in Chicago Tribune and other papers

    It seems to me that Dr Mikovits went to this conference in a deliberate attempt to create more publicity, which is clearly a strategy that worked, as the article we are discussing indicates. To call her statements (or her person) "hysterical" is a value judgment that you are free to hold. I...
  25. J

    XMRV Article in Chicago Tribune and other papers

    Regarding Coffin's quote: as someone who has had to deal with media before and seen them create a story out of nothing - don't read it as any more than it literally says. Media's job is to paint a picture and create a story. To do so, they piece together bits and pieces like someone who cuts up...
  26. J

    Interpretations of biochemically caused depression

    Hi Diesel, Good points! I tend to view the human brain as a meaning factory. It's job is to make sense of the world - discover causal links that allow us to navigate through the problems we are confronted with. It's busy doing this all the time even when it doesn't necessarily make sense...
  27. J

    Depression

    Bee33 - I guess you probably already know that anxiety is commonly associated with depression so I don't think it would be at all surprising for anxiolytic or anti-psychotic drugs to be helpful. For example, Clonazepam is something that several CFS doctors have recommended, not for its use as an...
  28. J

    Depression

    Hi Bee, I also have had depression consequential to CFS. I had CFS for 20 years before I ever had a depressive episode. I have to agree with you - in my view depression is far worse than the other symptoms I have. Because when are you depressed, nothing is of any value and nothing is...
  29. J

    Experiences with Clonazepam

    Wow, quite a range of responses. Thanks for the feedback everyone. Being able to get some decent sleep recently has made a lot of difference to my situation. But I'm starting to feel quite groggy in the mornings and during the day. I can't imagine scaling back too far on the 0.25mg of...
  30. J

    Experiences with Clonazepam

    Hi, wondering if anyone has any long-term experiences with Clonazepam (known down here as Rivotril and as Klonopin in the US) to report? My doctor prescribed this for me to try to help with sleep, particularly waking early in the morning with chest pain and anxiety. I was a bit reluctant to...