• 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.

    To become a member, simply click the Register button at the top right.

Search results

  1. W

    HIV/AIDS Advocacy as a Model for Catalyzing Change

    http://fastercures.org/documents/file/Back2BasicsFinal.pdf Strongly suggest reading and all of us as patients and carers reflecting on any relevance ...
  2. W

    Today's article in the Observer.........UK police and Wessely consider us 'dangerous!

    To those people not in the UK - The Oberserver/Guardian is an extremely well read and well respected paper. Often in turn cited by other papers. For those with strong writing skills I would strongly suggest writing a good response and attempting to get it published. I would suggest not...
  3. W

    Negative XMRV CFS study with Ila Singh's name on it (University of Utah)

    I do not believe that there is any conspiracy theory and I think it reflects badly on patients and their carers not to take this study very seriously. Here we have one of the best XMRV scientists in the world (Singh) collaborating with one of the best ME/CFS experts and advocates (Bateman) and...
  4. W

    Trine & Tribune All Over Contamination Theories

    Why is it that when we want press attention and a voice we are ignored - but when the media would like further confirmation of a lack of disease association with ME/CFS we are quoted. I am really saddened to be quoted in these two articles. I wish a journalist would quote something more...
  5. W

    The Mouse That Roared: Patient Advocate

    I have loved many of the patient advocate blogs - but as a fellow patient advocate and long time carer - I have to disagree with the general tone of this one. As the famous HIV Doctor -Marcus Conant said - and I think he is bang on: "Don't blame your adversaries - bring them (your...
  6. W

    Retrovirology Publishes Five Papers on XMRV and Contamination

    This seems like really unsettling news at Xmas! Does anyone know when Ila Singh's XMRV study will be released? And does anyone have any solid idea that it is indeed positive news - for those of us hoping XMRV is real? Thanks for any update.
  7. W

    KLIMAS on Radio This Weekend

    for those of us overseas would anyone be willing or able to capture the interview in writing and post here? thanks so much.
  8. W

    Studies presented at the XMRV workshop

    Also Andrea stated that Ruscetti's talk would be significant - does anyone know anything - a brief summary of the major findings would be really appreciated!
  9. W

    Studies presented at the XMRV workshop

    I agree - I am lost in too much information - if someone could provide a very brief summary of the major findings that emeged at the conference - this would be wonderful! Thanks so much in advance!
  10. W

    FDA approval for a cocktail approach for cancer treatment

    I wonder if this will also help XMRV in fast tracking a cocktail approach to treatment (as is currently the case with HIV) http://www.businessweek.com/magazine/content/10_36/b4193020841268.htm
  11. W

    MAY BE REPOSTED ME ASSOCIATION SUMMARY AND STATEMENT ON LO et al PAPER:

    I am really very disappointed with this statement. I am in the UK and agree with others that the answers will probably emerge from America. Even the CFIDS association while still saying a lot more needs to be demonstrated to prove causality are at the very least welcoming and encouraging...
  12. W

    Building the evidence for causation

    I wondered if it could be helpful for us to start to gather, build and collate on this thread - all the evidence that we are aware of that would suggest retrovirus - ME/CFS causality. I know we are all aware of the range of strange abnormalities that go on in the body - but perhaps it would...
  13. W

    Media Coverage of Dr. Alters NIH paper, post stories here

    amazingly for the daily mail - its actually an ok article!
  14. W

    What better way to prove causality than holding those clinical trials?

    I strongly agree - I think now - more than ever - is the time for us to galvanise and mobilise around one key message - I agree the message should be
  15. W

    Media Coverage of Dr. Alters NIH paper, post stories here

    The power of a name! The news coverage is hugely disappointing. Isnt it strange to know so much about an issue and then be able to judge the accuracy of the international news reporting! The lack of interest in the blood supply & the lack of understanding of how debilitating ME/CFS can be...
  16. W

    Media Coverage of Dr. Alters NIH paper, post stories here

    From the NY Times:"Dr. Alter was quick to note that its not at all proven that a retrovirus causes chronic fatigue syndrome. Instead, such an infection could result from underlying problems with the immune system." Has this possibility been explored and or discounted before? Anyone out there...
  17. W

    ME/CFS Demo: One woman protest in Wash DC!!!!

    This is excellent - if we can stage more of these across the globe - and take this one as a blueprint - and if we can fund the full page add in the washington post.. If we can do these things i think we can say ' it has begun'
  18. W

    Dr. Illya Singh on Dr. Racaniello's Program - Send her questions.

    Did anyone hear the show? anything new/exciting? Hopeful? Many thanks...
  19. W

    WHERE ARE THE FDA AND NIH XMRV STUDIES? 5 August 2010 - It is TIME

    PS: I also think we need to conserve some energy - my thoughts are when the FDA/NIH paper is released that we need to be communicating one very clear message - with collective voices - CLINICAL STUDIES NOW! If treatment can help people - and possibly even cure people - then all the other...
  20. W

    WHERE ARE THE FDA AND NIH XMRV STUDIES? 5 August 2010 - It is TIME

    I feel like if we all get angry and active right now we risk doing more harm than good. I do agree though if the study continutes to be delayed - beyond a couple more weeks - then perhaps it is time to get noisy and angry. Remember Bateman said that when all goes quiet - this is really very good...
  21. W

    De Meirleir - XMRV Testing in Norway THIS THUR AND FRI

    you know all my fingers and toes are crossed re the above,, but I must say sadly that KDM has made many promises before - usually directed straight to patients.. I have yet to see any of these grand promises come to anything substantial.. I hope more than anything I am wrong - and he is right on...
  22. W

    Ongoing NIH XMRV Research Projects

    I think this is really exciting - but also echo other people’s comments re the length of time (years) to secure results. Once the NIH/FDA paper has been released – I wonder whether we should all attempt to rally around a couple of key advocacy messages - I believe strongly that one of the...
  23. W

    *New* Dr Bateman - XMRV Q&A

    I think the very last sentence of this Q and A is perhaps the most important and promising one. The more I read the more I sense that many leading ME/CFS experts think that XMRV may be a part of the jigsaw puzzle - but perhaps not the whole puzzle itself - I sense that Bateman is suggesting that...
  24. W

    *15th July* Dr Lucinda Bateman & Vincent Racaniello - Webinar!

    For those who missed it - there were a lot of technical problems (so you didn't miss that much!) - the one golden egg - Lucinda Bateman's positivity about the study she is just finalising - look forward to this being released - but she bascially said - that there are positive things to look...
  25. W

    New York Times Published: July 14, 2010 Delay in Release of Study prompts outcry

    I think this is a good article on balance - unlike the Indepdent article which seemed to give with the right hand and then take with the left (felt eerily like Wessley)... Excellent in such a big paper - the challenge is to get some good journalists in reputable papers to go a couple of steps...
  26. W

    Boost NIH/FDA XMRV story on news site Reddit by voting: Very easy to do

    This is excellent thank you 'asleep' Another idea that people often do when they are angry - is write an open letter to a national newspaper - we could address it to the head of the DHHS (or any other key individual) and get as many people as possible to sign it (we could approach good...
  27. W

    FDA/NIH PAPER IN LIMBO; PATIENTS UNITE, by Mindy Kitei

    Has anyone started a thread? So that we can organise a world wide demonstration? If so can someone pls advise- where is it? We are in the UK and more than happy to do anything we can from this end.... I agree a worldwide demonstration is in order - the FDA study has implications for us all. And...
  28. W

    VIP Dx/WPI Combined PCR/Culture Poll for ACTIVE and LATENT Infections

    ANOTHER XMRV POSITIVE PERSON IN EUROPE not sure where is the best place to post this - but wanted to confirm another XMRV positive. My partner - ME/CFS for 7 years - orginally from Russia - living in the UK for 15 years is XMRV positive from VIP labs.
  29. W

    CDC XMRV Retrovirology Study on CFS Published

    The only one thing that the CDC study proves is that XMRV is not in people who have ‘chronic fatigue.’ Though perhaps even this assumption is not correct given Vernon’s critique of the test tubes etc. I have chronic fatigue (i.e total ongoing exhaustion, and as a result – often an inability...