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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

    Shooting Down the Top 10 Myths from the NHS Online Clinic

    Excellent post. Thank you. On the subject of an infectious cause of ME/CFS I asked further about ME/CFS and Lyme Disease. There are a growing number of cases of ME/CFS that turn out to be suffering from Chronic Lyme Disease and progress has been made by many on long term antibiotics. Even if...
  2. J

    XMRV and ticks

    From Better Health Guy blog and feedback from ILADS Conference he quotes 'Eva Sapi, PhD talked about the many exciting projects that her team is doing: They are looking for XMRV in ticks to see if the retrovirus may be transmitted by tick exposure' Eva Sapi has done amazing research with...
  3. J

    UK Study - Pediatric CFS

    http://news.bbc.co.uk/today/hi/today/newsid_8975000/8975412.stm Prof Jill Blech says in Radio 4 interview that the infection could be viral or bacterial as I said in an older post it could be Lyme Disease something that is not being properly ruled out at present because blood tests can miss...
  4. J

    UK Study - Pediatric CFS

    Thanks Shannah I hadn't realised you had already started a thread. I just posted this on the thread I started and I do think it is worth considering. Many thanks for the link into BBC news. How ridiculous that no mention of XMRV and MLV. However reading the article in your link the...
  5. J

    BBC BREAKFAST NEWS 7th September

    Bertidog Many thanks for the link into BBC news. How ridiculous that no mention of XMRV and MLV. However reading the article in your link the researchers only found indications of an on going INFECTION. The jump that it is a virus is only assumption. Dundee Scotland University did the...
  6. J

    BBC BREAKFAST NEWS 7th September

    At last some coverage of the retrovirus this morning in the BBC news, very cautious report and refering to it as a virus not as we know a retrovirus. Hopefully this will encourage our UK press to do some sensible coverage. Sorry it doesn't appear to be about XMRV research. Dundee...
  7. J

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

    I spoke with several National paper editors all rather disinterested although The Daily Mail news editor was clearly unaware that they had already run this pathetic excuse for an article...
  8. J

    Who Is Dr. Burrascano & How Big Is the Lyme Group?

    Sorry forgot to copy the second e mail Second email: Hello! Thanks for letting me know there is a buzz about this going on. I am not part of the WPI (Whittemore Peterson Institute) but I do have an interest in HGRV (formerly known as XMRV) because I strongly believe it is an important...
  9. J

    News from WPI symposium: Name change to be proposed for XMRV

    Sorry forgot to copy the second e mail Second email: Hello! Thanks for letting me know there is a buzz about this going on. I am not part of the WPI (Whittemore Peterson Institute) but I do have an interest in HGRV (formerly known as XMRV) because I strongly believe it is an important...
  10. J

    Lyme Disease summary: 30% of PWC have Lyme?

    Perhaps this is why some people with ME/CFS/Lyme don't get better. Hi Burrascano has sent second e mail found on Madison area Lyme Support group http://madisonarealymesupportgroup.wordpress.com/2010/08/22/dr-joseph-burrascano/ Second email: Hello! Thanks for letting me know there is...
  11. J

    Who Is Dr. Burrascano & How Big Is the Lyme Group?

    Hi Burrascano has sent second letter found on Madison area Lyme Support group http://madisonarealymesupportgroup.wordpress.com/2010/08/22/dr-joseph-burrascano/ post on my blog and other info about Burrascano http://lookingatlyme.blogspot.com/2010/08/xmrv-hgrv-mecfslyme-disease-update.html...
  12. J

    News from WPI symposium: Name change to be proposed for XMRV

    Xmrv-hgrv me/cfs/lyme disease update Hi Burrascano has sent second letter found on Madison area Lyme Support group http://madisonarealymesupportgroup.wordpress.com/2010/08/22/dr-joseph-burrascano/ post on my blog and other info about Burrascano...
  13. J

    You aren't going to believe this...Mycoplasma/Lo/XMRV

    Hi I am sorry I can't answer your questions off hand, Eva Sapi is well known in the lyme world for her amazing research I am sure the NIH would ignore it as they don't want to believe there is such a thing as chronic lyme what is going on in Lyme is a parrellel with what is going on with ME/CFS...
  14. J

    You aren't going to believe this...Mycoplasma/Lo/XMRV

    When chronically ill we are rarely infected with just one thing. Mycoplasma has long since been associated with ME/CFS by many specialists in this field not the Reeves/Wessley cabol. Mycoplasma has also been associated with patients with Lyme disease I posted in another thread about research...
  15. J

    You aren't going to believe this...Mycoplasma/Lo/XMRV

    'The thing which stands out in my mind is, when I STOPPED doxycycline, oh my god I have never been so ill in my life.' You should read up on Lyme Disease Doxy is the recommended treatmentand when we stop treatment before infection is cleared then symptoms do deteriorate significantly. See...
  16. J

    Lyme Disease summary: 30% of PWC have Lyme?

    I should have said that anyone living in UK may like to pop along and look at Eurolyme chat line if they think they could infact have lyme and ask some questions there then do report back here and let others have the benefit of your experience. http://health.groups.yahoo.com/group/Eurolyme/...
  17. J

    Lyme Disease summary: 30% of PWC have Lyme?

    Yes sorry the research was not quoted but I think Kenneth Friedman a reliable source although I have read as much on Lyme charity websites before but of course when you want a specific reference you can't find one anywhere. Sam Donta says ' A number of influential doctors and researchers have...
  18. J

    Who Is Dr. Burrascano & How Big Is the Lyme Group?

    Thank you for clarifying about Dr Burrascano. It concerned me to see the number of patients posting on the thread about XMRV and HGRV that didn't know Dr Joe Burrascano or the controversy over Lyme Disease particularly when so many of the experts with ME/CFS ie Nancy Klimas, Judith Mikovits...
  19. J

    News from WPI symposium: Name change to be proposed for XMRV

    Xmrv- hmrv Following this thread it saddens me that many people don't seem to be aware of Lyme Disease or Dr Joe Burrascano. As according to research 30% of people diagnosed with ME/CFS can actually have Lyme Disease I decided to write a post on my blog to sumarise and give a link to...