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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. jace

    PIP Review form!!!

    CAB advisors are variable - some are great, well trained, do a good job. Other, not so much. The CAB funding was decimated, hence the shortage of trained, paid staff. Welfare Rights people, the same thing applies. Check out what help there is in your area with this link...
  2. jace

    Death Contract? ME/CFS Experts and Advocates Unite to Oppose US 'Case Definition' Contract

    Parvo's hotlinks are still broken, but you can follow them by copy-pasting into your address bar. What is happening over there in the US? Your 'Health Service' seems determined to conflate a serious neuro-immune disease that kills people with mild depression, in imitation of the worst of...
  3. jace

    Join urgent email action to get FDA approval of Ampligen - by Thurs 6th December'.

    Shared on a google group (neuroimmune alliance) and sent my copy to the committee...
  4. jace

    Simon Wessely wins prize for "Standing Up For Science."

    For the Blood Ban Demo in London, last year was it, I took a sleeping bag with me to lay down on, and it not only allowed me to survive the day, but it made a good visual point. Emotive, but also energy-saving. So I disagree with your point, IVI.
  5. jace

    Adrenal Fatigue: A Possible Element of ME/CFS?

    Nice one, Barb :thumbsup:
  6. jace

    Simon Wessely wins prize for "Standing Up For Science."

    said Bob. Ambiguity is all part of the game-plan, along with revising history and being all things to all people. It works, unfortunately, unlike the illness model and treatment plans he's put in place for us, as witnessed by Wessely's lucrative and influential career. The noodlemaz...
  7. jace

    Adrenal Fatigue: A Possible Element of ME/CFS?

    Strange how many people have reported greatly improved health by following the model explained in STTM... your personal experience is anecdotal, and not necessarily relevant.
  8. jace

    Simon Wessely wins prize for "Standing Up For Science."

    Hi folks, did anyone see the comment by clouty on noodlemaz ;) Speaks to the out of context argument... Regarding the truth or otherwise of the patient communities perception of Prof Wessely, and that of his colleagues Peter White and Trudy Chalder, one has to study a few documents prepared by...
  9. jace

    Simon Wessely wins prize for "Standing Up For Science."

    Here you go, Bob http://www.meactionuk.org.uk/Hoopers-initial-response-to-PDW-letter.htm and http://www.ncbi.nlm.nih.gov/pubmed/22571806
  10. jace

    Adrenal Fatigue: A Possible Element of ME/CFS?

    Barb C said, on the last page But I had the rash before I'd heard of Cats Claw too. It's very like a lupus rash picture I found, it's similar to a parvovirus rash, and a HHV1 or was it 2 rash too. Cat's Claw has been used as an immune modulator and anti-viral for centuries, and is considered...
  11. jace

    Adrenal Fatigue: A Possible Element of ME/CFS?

    I'm in the UK, and I started with the Rio Trading Cats Claw - 500mg 3/day. I now save money by capping my own, using powder from Baldwins, which has cut the cost to 20% of the ready made version. Baldwins' search engine is hopeless - best to use Google.
  12. jace

    Adrenal Fatigue: A Possible Element of ME/CFS?

    Indeed. For many of us it is the only road open. Love your care with analysing the washing up liquid effect, Mark. I have been taking a rainforest adaptogenic herb, Cats Claw. One time, I stopped taking it for a while to see what happened (one can get fed up with all the pills), another time I...
  13. jace

    Lipkin bad news folks

    Shades of the Wesseley 'Death Threat' spin, Daily Mail emotional blackmail at it's worst. Genuine scientific questions are only a threat to those trying to manipulate the agenda. I'm appalled by this statement.
  14. jace

    Lipkin bad news folks

    Why was Lipkin so quick to dismiss tissue sampling and autopsies, as shown in the press conference? Surely, the Macaque study showed us that the MRV quickly cleared from blood (within two weeks of infection, as I recall) and takes up residence in lymph tissue... o_O Any MRV, not just XMRV, might...
  15. jace

    Low dose Naltrexone

    The lower the dose, the lower the cost ;)
  16. jace

    Lipkin bad news folks

    Yes, that's my reading of the situation too. Thanks, Vincent.
  17. jace

    Low dose Naltrexone

    Hi Amy, here's the facebook group for LDN for ME - https://www.facebook.com/groups/200010163370187/ If you pm me your facebook name, I'll get you added to the group. They've lots of files with information on compounding, dosage, experiences, etc. Well worth a look if you're on Facebook. I...
  18. jace

    In Memory of Rich Van Konynenburg.

    I am so sorry for your tragic loss, and can't imagine how you must be feeling now. Rich was such a huge help to so many, the whole community will mourn the loss of such a kind and knowledgeable member of our community
  19. jace

    Lipkin bad news folks

    I'm unimpressed by the Lipkin study, and so are just a few others: http://me-advocacy.com/Lipkin_study_review.html It seems to me that all the faults we know so well from other negative papers have been repeated. I'm amazed by some of the comments to Lipkin on that groupcard...
  20. jace

    Lipkin bad news folks

    Anybody else here weirded out by the body language and demeanor of the press conference participants that we could see? Why was Hilary Johnson's question about 'XMRV' in the prostate cancer studies slapped away? Lipkin's 'not prepared to talk about that online' indeed... I'm weirded out...
  21. jace

    CFS/M.E. ~ A Guide to Wellness by John H. Wolfe

    John H. Wolfe said And yet, up until recently, any time in sunlight caused me to crash badly. This year, I seem to be past that particular peculiarity, but that was the way of it for the last few years. I used to hope for cloudy days when I had to go out, and I have a couple of broad-brimmed...
  22. jace

    CFS/M.E. ~ A Guide to Wellness by John H. Wolfe

    Funny guy, this John. He posts asking for feedback, and then gets highly defensive when feedback is given. Methinks it was praise, not feedback that he wanted.
  23. jace

    Simon Wessely's Warped Mind Strikes Again

    Me too, but realistically why should he turn away from his mental blinkers, when they have carved him such a lucrative niche?
  24. jace

    XMRV testing: The REDLABS, trading as VIP Dx, WPI connection

    We don't have the evidence, that's true. That's why the op was full of question marks. We, as I remember, were promised validation data but it never materialised. As you know, Mikovits tried to get information about the VIP Dx/REDLABS tests for two years. She drew a blank to, indeed, she was...
  25. jace

    Paralympic Armchair Action 30th August - UK

    Newsnight was nearly all about the Paralympics. It features evil ATOS and government ministers, the DPAC coffin demo, wonderful wobbly Francesca Martinez, a couple of Uncle Toms... http://www.bbc.co.uk/iplayer/episode/b01mfjm9/Newsnight_29_08_2012/ (won't play outside the UK)
  26. jace

    XMRV testing: The REDLABS, trading as VIP Dx, WPI connection

    References were given earlier in the thread. You keep insisting I 'debate' according to your agenda. A case of pots calling kettles black?
  27. jace

    Paralympic Armchair Action 30th August - UK

    Do you want to protest at ATOS, the cruel assessors of us ill people, being the sponsors of the Paralympic Games? Here's some ideas from Disabled People Against the Cuts: Nobody could do all the things suggested below, but if we all pick one thing that we feel comfortable with, it will make a...
  28. jace

    XMRV testing: The REDLABS, trading as VIP Dx, WPI connection

    Impossible, not improbable. REDLABS Nevada is not connected to RedLabs Belgium.
  29. jace

    Daily Beast: Interview with Mikovits who tells her side of events...

    I couldn't possibly comment, except to say that it was the criminal charges that were dropped, and only the civil case brought by the WPI remains. They should drop that too, but it has the convenient (for WPI and denialists*) effect of gagging Mikovits. Despite the criminal charges being...