• Welcome to Phoenix Rising!

    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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    Article: IACFS/ME Chief Friedberg Urges Letter CDC Letter Writing Campaign for New Le

    I just emailed Dr. Monroe and both email addresses seemed to work as I received two automatic replies stating I am currently out-of-the-office and unable to reply to your message. I will be checking email and voicemail messages periodically during my absence. If this matter requires...
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    Article: IACFS/ME Chief Friedberg Urges Letter CDC Letter Writing Campaign for New Le

    Can anybody confirm that Steve Monroes email address in this article is correct? If this email address stephan.monroe@cdc.hhs.gov is googled, no results are returned. On an FDA article his email address is listed as steve.monroe@cdc.hhs.gov
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    relavent cfs tests for aussies in australia

    Hey Megan, Im not Theda but I do understand why you thought I was! On the top of that blog entry I wrote Theda Myint because underneath I was referring to an article in the newspaper about her. Theda and her family also composed a list of tests that she was getting done (mainly overseas...
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    relavent cfs tests for aussies in australia

    I wrote a blog entry a few months ago about CFS related tests in Australia: http://livingwithchronicfatiguesyndrome.wordpress.com/2010/03/11/cfs-related-tests-performed-in-australia-and-worldwide/
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    ERV's latest blog on the FDA paper. One step too far?

    I just searched the forums and her name is Abbie Smith. Surely some of her comments would jeopardise her future employment opportunities. If she was applying for a job and the company searched for her name and all of these rude and unscientific comments came up that corresponded to her name, she...
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    ERV's latest blog on the FDA paper. One step too far?

    Does anyone know ERVs real name? She may be less likely to post rude, attacking and controversial statements if they are associated with her real name as opposed to a pseudonym. On her contact page she writes: These dont seem like the words of a kind person who cares about the welfare of...
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    Report on the WPI community open house. Aug. 21, 2010

    Thanks for the report Rich. :Retro smile:
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    Cryptovirus found in 96% of ME/CFS patients (old research news from 2006)

    Does anyone know what percentage the Cryptovirus/PIV-5 is found in healthy controls?
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    News Interview *today* Andrea & Annette

    The interview has been posted on YouTube in two parts. Part 1 is here: http://www.youtube.com/watch?v=GQJ60UdWz0c Part 2 is here: http://www.youtube.com/watch?annotation_id=annotation_119896&v=4qLrFxxEf6w&feature=iv
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    Alan Dove responds to his XMRV/CFS/ME critics... from TWIV podcast..

    In his last blog entry and comment, Alan Dove uses primarily ad hominem attacks as his argument. Rather than discussing the topic, he attacks CFS patients and hence renders CFS patients conclusions as flawed. By prohibiting comments on his blog, his is acting in a diametrically opposed manner to...
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    To the Aussies

    Setting up an Australian advocacy group is a great idea! Count me in.
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    Abstract from 12th International Conference On Malignancies In AIDS And Other Acquire

    There's a thread about this here: http://www.forums.aboutmecfs.org/showthread.php?6531-Quiet-Dynamite-XMRV-as-an-Infectious-Agent There are definitely some promising statements in this abstract though :Retro smile:
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    Another CDC/CFS website change

    It does seem strange that they changed their website on the 21st of July 2010 and again recently. They wouldn’t have changed their website on the 21st of July if they were going to completely change it again a few weeks later. To me this indicates that something has happened between the 21st of...
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    XMRV Advertising

    The WPI have mentioned that XMRV is found in a percentage of atypical MS cases. These arent your normal MS patients as Dr Holtorf seems to be confusing them with. The XMRV positive percentage of atypical MS patients hasnt been made public and the study hasnt been published yet. I believe Dr...
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    XMRV Advertising

    http://www.aolhealth.com/2010/07/01/xmrv-virus-and-chronic-fatigue-syndrome/ I just left a quick comment on this article by Dr Holtorf. He is just misinterpreting what the immunosupressed study results meant. The study he is referring to has a summary here...
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    Addenda to the Science paper

    I may have overlooked something but I think they only used Switzer's assay to rule out contamination. All of the cell lines and 101 patient materials tested negative for mouse contamination.
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    CDC's Updated CDC/CFS Website: 21 July 2010 - CYA Plan for their desperate cover-up!

    Within the past week, CDC-INFO has responded to emails that have questioned the difference between CFS and ME. CDC-INFO have answered the questions by stating: This contradicts what usedtobeperkytina was told by the CDC. CDC-INFO has also contradicted what appears on their website...
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    xrmv testing- australia

    A Medscape article was published today, titled Blood Products Advisory Committee Mulls XMRV Information. The article can be found here: http://www.medscape.com/viewarticle/725820 I am assuming that Dr. Le Grices XMRV assay has been transferred to research labs in Australia. The fact that...
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    CDC's Updated CDC/CFS Website: 21 July 2010 - CYA Plan for their desperate cover-up!

    Yes, Im aware that this is a public and searchable forum. If the CDC were reading these forums, I think they might be able to learn a thing or two about XMRV including how to find it!:cheeky grin: Regardless of whether Dr. Unger knows Im setting a trap for her, she still has to clarify a...
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    CDC's Updated CDC/CFS Website: 21 July 2010 - CYA Plan for their desperate cover-up!

    I emailed Elizabeth Unger several days ago, indirectly questioning the changes to the CDC website. As Im sure you are all aware, she is the new head of the CFS department of the CDC (the person that replaced Reeves.) I thought her appointment would signify a new direction for CFS. I...
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    My New CFS Video--CFS Patients Address the CDC

    Thank you for making such an excellent video Dreambirdie. It should be mandatory for doctors around the world to see this video. While just taking up 8 minutes of their time, it would change their whole perspective on CFS. Thank you for putting the time and effort into making such a succinct...
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    Olympic Swimmer

    Cate Campbell was one of Australias brightest swimming prospects. Cate and Emily Seebohm were the two Australian youngsters at the Beijing Olympics (both 16 at the time, from memory) who had the most promising swimming futures. It is devastating that Cate may have CFS. If I was to bet on...
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    Dr. T on the recent controversy

    Like I said before, Dr. Teitelbaum will recommend treatments other than his SHINE protocol. He will probably continue recommending his SHINE protocol but also recommend antiretrovirals. Another option of his would be to focus his SHINE protocol on those who are XMRV negative and have CFS. Also...
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    xrmv testing- australia

    XMRV testing in Australia I know of several people from Australia who have tested positive to XMRV. They have all flown to the UK or USA for ulterior purposes and had an XMRV test. I noticed on this thread that the VIDRL was mentioned as a place that people were emailing encouraging them to...
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    Dr. T on the recent controversy

    Respose to Dr. Teitelbaum's article Although the article by Dr. Teitelbaum argues against CFS being psychosomatic, his argument is contingent upon his own SHINE protocol helping CFS patients therefore CFS is not psychosomatic. A more sufficient argument that Dr. Teitelbaum has neglected...