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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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  1. Adam

    Where is the UK coverage of the FDA/NIH paper???

    Thanks pictureofhealth. I wonder, but to tell you the truth, I have not got the foggiest idea.
  2. Adam

    Where is the UK coverage of the FDA/NIH paper???

    I posted on Independent STD thread as Newshoundfreak. Strange that The Independent covered the delay in the Alter/Lo paper but not the paper itself? In their original article they said that 'scientists' had told them that the Alter paper was delayed because it was seriously flawed!!! Of course...
  3. Adam

    NEW! - UK DEPT. OF HEALTH to BAN ALL ME/CFS BLOOD DONATIONS from NOV 2010 (from MEA)!

    Maybe they have decided there is a risk of passing on false illness beliefs in the blood? :cheeky grin::cheeky grin::cheeky grin::cheeky grin:
  4. Adam

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

    I had 2 periods of remission each lasting around 3 months in the first two years. Then it came back. I am now so disabled I qualify for higher rate (DLA) mobility, which is very hard to get here in UK believe me. So please be careful. Don't run as they say before you can walk. I was forced back...
  5. Adam

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

    With Advocates like Sheppard who needs enemies. Servile is the word that comes to mind. servile servile [sr vīl] adj 1. too obedient: too willing to agree with somebody or to do whatever demeaning thing somebody wants
  6. Adam

    WPI UK XMRV testing/study

    I think things are still fluid from what I can gather. The organisers on http://www.xmrvweb.me.uk/ are still arranging more venues. Contact them to see if they have Ireland dates sorted.
  7. Adam

    Article: "Evil Eye" PR Forum Member's Novel Debuts

    Many congratulations! A great achievement even without this awful illness. Good luck with this work and your subsequent novels.
  8. Adam

    Difference between sudden and gradual onset XMRV

    Thanks for this. I would bet your analysis is pretty near the mark.
  9. Adam

    Difference between sudden and gradual onset XMRV

    It was bizarre. They did suggest for a time that I had some weird kind of epilepsy. Gave up on that and tossed me in the waste basket diagnosis of CFS.
  10. Adam

    WPI UK XMRV testing/study

    Sheffield Anyone going to Sheffield on 22nd July, beware, you will run into my ugly mug! :winking: I'm the one with the battered old stick doing the Monty Python Ministry of Silly Walks silly walk. :tear: Oh, and i am bit greyer than avatar pic. :worried: :Retro cool::Retro cool::Retro...
  11. Adam

    Difference between sudden and gradual onset XMRV

    This is a good point I can relate to. My sudden onset was Oct 1996. And yet, I could point to a number of possible symptoms prior to that. About 6 months before the onset I lost the use of my legs for about an hour. I was falling to the floor with every step and just gave up in the end and sat...
  12. Adam

    Email - Dr Alter

    Good point. The CDC paper was always going to be a blank given they set off way back in October 2009 when scientists thought they could snag XMRV with a butterfly net. The likelihood is NIH started later and got their positive- negative samples sorted out before they kicked off their work...
  13. Adam

    FDA/NIH XMRV paper ON HOLD

    Nice post Marco. This line of thinking makes sense to me. We knew all along the CDC began their work before the importance of culturing became evident. On the other hand it does make the CDC look sloppy IMO. Judy M gave them the recipe for finding XMRV - so why not use it?
  14. Adam

    FDA and NIH confirm WPI XMRV findings (report of leaked presentation)

    Aww thanks Shelley. Even little smiles are just fine by me. Adam smiles all the way to Tuscon
  15. Adam

    FDA and NIH confirm WPI XMRV findings (report of leaked presentation)

    Agreed. Leaks, as opposed to rumours, are vital to help keep the pressure up. Keep things moving. More leaks please...oh and will someone pass me the carrotts please?
  16. Adam

    How long?

    Excellent analysis of where we are now and where we are going with this illness. Many thanks for thinking it through and putting down the detail. Some other useful contributions. Usual negative ones, too, but there you go, you can't please everyone. Why anyone would hope that XMRV is not the...
  17. Adam

    How long?

    Hi Leaves I read up everything on here and elsewhere and decided I needed a goal. Not for everyone I understand but for me I needed an age by which (if I test positive) I would receive treatment (on the NHS) if XMRV proves causal etc etc. I estimated 2/5 years. Two years if you can access...
  18. Adam

    WPI UK XMRV testing/study

    Polly I haven't had an email yet. I go away in couple of weeks (for 1 week) and am hoping to hear before then. Sorry to hear you are in a bad way. take care Adam
  19. Adam

    Anti-XMRV Blog -New post

    ERV is a very sad person. I pity her.
  20. Adam

    XMRV Article in Chicago Tribune and other papers

    Rebecca - be curious no more. I have the answer - jealousy.
  21. Adam

    XMRV Article in Chicago Tribune and other papers

    I actually thought Judy M always 'came across' as reasonable and well- mannered. I must have been mistaken.
  22. Adam

    XMRV Article in Chicago Tribune and other papers

    Bravo Parvo. :victory::victory::victory:
  23. Adam

    XMRV Article in Chicago Tribune and other papers

    OH MISSSSS!!! Flex started it. Tell HIM to go sit on the naughty stool. :innocent1:
  24. Adam

    XMRV Article in Chicago Tribune and other papers

    I refused to get bogged down with tiresome articles. Pass me the plunger Flex - I think we got a blockage here.
  25. Adam

    XMRV Article in Chicago Tribune and other papers

    I believe it is a dollar coin or is than a toonie? And a loonie is a two dollar coin? Help me out Canucks. I'm gonna look silly here showing off my I know all about Canadian stuff he-he Adam
  26. Adam

    WPI UK XMRV testing/study

    Thanks MaryB. It's tough waiting for this. It feels like the last chance saloon to me. I'm 47 and had this damn thing for 14 years. The last year I've had a downturn overall. I'd just like to give it name other than CFS! Thanks for the reassurance. Adam
  27. Adam

    WPI UK XMRV testing/study

    I haven't got email Knack, but I put down for home draw. Don't know what to say for best.
  28. Adam

    WPI UK XMRV testing/study

    Hi Abraxas Thanks for this info. I have only just seen it today. It has put my mind at rest. Adam
  29. Adam

    DR SCURR 7th June 2010 ....at last I've been convinced that ME is real

    Whatever one else said. Nice one Dr Scurr. @rse grapes my @rse.
  30. Adam

    "We Are Not Alone" on CFIDS Assn web site (by Suzanne D. Vernon)

    LOL@Jace I guess none of them have met me? Eejit extraordinaire. BTW, did someone mention a bag? No. Not the sick bad pull-eeeeze, the other one that helps you breathe. :Retro tongue::Retro tongue::Retro tongue: