• 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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. W

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    Does anyone know if these meds have to be stopped before the Nagalase test: Rosuvastatin ,aspirin and Omeprazole? Thanks
  2. W

    TESTING for EBV, CMZ, HHV6 igg igm and viral load in North England

    Hi Sian. As EBV and CMZ are in the NICE guidelines as needing to be excluded before an ME diagnosis is made, then your GP is obliged to perform these two. Perhaps you could save some money if you did these two on the NHS
  3. W

    Only three days left - our campaign is snowballing!!

    Esther, have you done it yet? If you need help, e-mail me on choiceforme@hotmail.co.uk. 18 hours left to go and it's getting very exciting!!
  4. W

    Only three days left - our campaign is snowballing!!

    http://forums.aboutmecfs.org/showthread.php?9129-chance-for-UK-residents-to-influence-NHS-policy&highlight=open+consultation
  5. W

    Only three days left - our campaign is snowballing!!

    UK RESIDENTS Have you submitted a response to the Dept of Health's Open Consultation on Choice? It is gathering huge momentum and it would only take you 1 minute. Just e-mail choiceforme@hotmail.co.uk and ask for the e-mail which you can forward to the Dept of Health. This is a response that...
  6. W

    Dr Myhill wins back her licence to practise

    That's the best news I've heard in a long time!
  7. W

    chance for UK residents to influence NHS policy

    Just 10 days to go! The consulation ends on 14th Jan, so please e-mail me on choiceforme@hotmail.co.uk to get your copy of the completed questionnaire to forward to the Dept of Health. > SUMMARY > > This is what the Dept of Health says the Consultation is about: > > > "We need to...
  8. W

    chance for UK residents to influence NHS policy

    Hi, yes, sorry, sent a couple of e-mails out with today as the deadline instead of Tuesday. Just confirming that it is Tuesday. Would like to spend Wednesday fitting feedback into the final version. However, if anyone comes up with something really good after that date, I will still try and fit...
  9. W

    chance for UK residents to influence NHS policy

    No, you can answer as few questions as you like. In our draft, I think we have chosen 14 questions. PM me with your e-mail address (maybe you already have) and I will e-mail you what we have done so far. Or e-mail choiceforme@hotmail.co.uk . Please involve as many people as possible. I want...
  10. W

    chance for UK residents to influence NHS policy

    It is not often that we get the chance to have a say in what happens in the NHS, but UK residents now have a wonderful opportunity to influence decisions in favour of ME in the Department of Health's Open Consultation on Choice. If you would like to take part in this consultation (which...
  11. W

    Chance for UK residents to influence NHS policy

    It is not often that we get the chance to have a say in what happens in the NHS, but UK residents now have a wonderful opportunity to influence decisions in favour of ME in the Department of Health's Open Consultation on Choice. If you would like to take part in this consultation (which...
  12. W

    Speak another language? Project ENOUGH!!! needs you!

    I'll try with Italian (lived in Italy for 13 years)....but it's so tiring...I might crash every now and then and have to disappear.
  13. W

    1st International Workshop on XMRV

    Thank you for posting this Joy. It has cheered me up no end!
  14. W

    *NEW* information from WPI (30th March)

    Actually, as a cancer patient, Esther's comments did upset me slightly (as eating well and healthily is my main hobby!) but I realise that this forum is for ME sufferers and her comments were just to reassure people so no offence taken whatsoever.
  15. W

    WPI UK XMRV testing/study

    Yes, I'm waiting too despite confirmation from Dr Mikovits (actually waiting on behalf of my friend's daughter, not for me, I'm not in the study)
  16. W

    Welcome wideawake - one of the UK 14 (XRMV+)

    At the moment, my current private ME doctor is putting me on Equilibrant and LDN. I have challenged my Primary Care Trust to do something with me, but so far all they have done is get me referred to Liverpool ME clinic who say there is a 4 month waiting list at least, which is a pain, cos I...
  17. W

    Welcome wideawake - one of the UK 14 (XRMV+)

    It was getting so exciting on a different thread (XMRV2)- with people saying that they loved some of the threads so much that they would marry the people posting, that I couldn't resist the temptation to join in! Now that my post has been moved to its own thread, it sounds like I wanted to set...
  18. W

    Cause of ME a "state secret" in UK?

    Not sure if this has already been posted. If so, please delete. Thank you for your enquiry on the 23rd January 2010 regarding FD 23/4553/1 - Myalgic encephalomyelitis (ME)/postviral fatigue syndrome (PFS): papers and journal articles; correspondence and enquiries with MRC replies - Closed...
  19. W

    Welcome wideawake - one of the UK 14 (XRMV+)

    Thanks Kim Yes Kim, please move this to another thread. I can't promise I will post very often though, but I will try my best Thanks
  20. W

    Welcome wideawake - one of the UK 14 (XRMV+)

    [I moved wideawake's posts to their own thread. Please join me in welcoming her to the forums. Kim] With all these marriage proposals flying around, I have decided to come out of hiding! You never know... Anyway, my daughter and I belong to the UK 14! I am XMRV positive, my 18 year old daughter...