Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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California Conference Season 2014: Stanford Presents - Advances in Clinical Care and Translation...

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Mar 20, 2014.

  1. NK17

    NK17 Senior Member

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    I read between your lines @NEEDACURE.

    By putting the title of professor before Dr.Montoya's name I didn't mean to make him or anybody else a disservice :).

    As @Valentijn has well said, sometimes titles are a useful tool in life to achieve respect and we all know how much the ME/CFS medical field needs respect and recognition.

    I can tell from the Stanford videos that I've watched with Dr. Montoya speaking, how humble and invested he his.

    Because he is also a professor I hope that many young doctors will be attracted by his work @ Stanford and will be willing to learn about ME/CFS and continue to share and deepen the knowledge.
     
  2. NEEDACURE

    NEEDACURE

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  3. NEEDACURE

    NEEDACURE

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    Excellent points NK17!! I thank you for allowing me to see another side in that! Keep fighting the good fight!! :)
     
  4. NEEDACURE

    NEEDACURE

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    Very good point I would not have thought of. Thank you!
     
  5. Ember

    Ember Senior Member

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    Such flagrant dishonesty from Dr. Unger! If heterogeneity is the problem, what is the case for lumpers? Why are Dr. Unger's statements allowed to stand?
     
    taniaaust1, beaker, Izola and 3 others like this.
  6. anniekim

    anniekim Senior Member

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    Great work and exciting to see what they are doing but like others on here I am sorely disappointed that Unger says there still isn't any consensus on PEM being mandatory for ME. Shocking that this is still being said. Also that she refuses to do the two day testing. It really feels she is purposely (from powers above?) still trying to impede progress. It just seems ridiculous to not do the two day exercise testing as it is to not acknowledge PEM is necessary to be diagnosed with this illness
     
    taniaaust1, Kati and Valentijn like this.
  7. Izola

    Izola Senior Member

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  8. Izola

    Izola Senior Member

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    I lost my post, can't redo too indisposed. Yes, JR I will do book review. Right now in the bottom 10%. Iz
     
  9. Izola

    Izola Senior Member

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    ********************************

    I'm guessing that soon they won't. I've heard that people above her heard about it. It needs no other explanation. She's trying to put a lid on a kettle that's boiling.
     
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  10. Kati

    Kati Patient in training

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    Can you be more precise when you say "I've heard people above her heard about it"
     
  11. NK17

    NK17 Senior Member

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    @Izola Let's keep the pressure on the Gov and get the lid on the kettle fly as high as it can without burning anybody, just to expose nothing but the truth.
     
    Kati and Izola like this.
  12. Izola

    Izola Senior Member

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    Already started. IMHO Reach everybody in the chain of command above Sebilious(sp?) Should send letters to them. I think a short brief about ME and what Unger has done e.g. the CPET and any other cogent soundbites that she has no clear answer for. JustinReilly and Nielk have a nice list of names and addresses President, Senators, Reps and others.. I too do not want to hurt anyone but both Unger and Sebillious seem to me to be in either over their heads or are playing Howdy Doody to the psychobabblers.

    They are hurting me and a million others plus the 17 million all over the world. Their failures are hitting me way hard and I am angry. Iz
     
    taniaaust1 likes this.
  13. Izola

    Izola Senior Member

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    No, because it may be rumor. But, the possibility is there. And I have written a couple brief letters. I am in relapse right now but I thought I read something on this thread that made her position seem unclear to others and if they get it others will too. I make no guarentee of my spelling or use of words. I am in M.E.Max.

    This is a question in general for everyone or anyone-- What precipitated the revelation that IOM and HHS had done no report or clinical or research criteria for the Gulf War Vets? Iz
     
    Last edited: Mar 22, 2014
  14. Izola

    Izola Senior Member

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    uurah!
     
    Jon_Tradicionali likes this.
  15. beaker

    beaker ME/cfs 1986

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    Maybe since she disagrees she considers there to be no consensus . * shakes head*
     
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  16. anniekim

    anniekim Senior Member

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    Sorry I know you are not at all well at the mo so no rush to reply but when you say that people abo ever have heard about it, do you mean they have heard and are going to challenge her (a very good thing) or that they are directing her to impede progress? Sorry I wasn't clear from what you wrote. Many thanks
     
  17. Izola

    Izola Senior Member

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    Only meant a rumor that information had risen up above her. I do not know the reliability, I should not have said anything. I guess I don't exercise my best judgement when I am feverish and sick and every one of my M.E. symptoms has come out of hiding and my doctor can't seem to see anything but a fever and cough, if that.

    I was for a brief while happy, but should have not repeated what is rumor. I did not hear any rumor that something was to be done. I guess I took at face value some off hand remark because the GW Vet' problem had been outed.

    The facts are so clear that there's been wrongdoing but governments seem to be never too hasty to see or to fix wrongs. After 30 years I guess there is not much over sight.

    I had thought once that If only we could send short emails like saying, after a short lead in, that Sebellious via Unger says She will have IOM to do a research and clinical criteria for ME but then vehemently refuses to do the 2 day CEPT that many experts say could be the one test that could separate ME from others but only agrees to do the one day which will do nothing. If I could scramble those words into cohesiveness, I would do it.

    We need to be more active, I guess, though rolling over in bed isn't all that effective. Does any one know how many petitions for M.E. are out there? I have been getting lot of petitions requests for all kinds of things to sign in my email. Some of them get massive amounts of signatures while others go kind of dormant.

    Does anyone know what is now going on with the interrupted Gulf War Vet "non criteria?"

    Does anyone have the ability to state our plight so cogently and briefly it gets the attention and care of others? We have big hurdles to crawl over. With all the viruses we have you'd think we could "go viral." hahaha
     
  18. taniaaust1

    taniaaust1 Senior Member

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    Its how I feel too, talk is cheap. Unger just pays lip service to things and nothing more.

    If she was serious about this illness she wouldnt try to play it down in various ways eg she'd be pushing for 2 day exercise testing and other things which could really help distinguish this illness from others.
    ............

    I think Ive been sick too long. There has been too many conferences like this done for me over the years with no real progress forward. Its like this conference is just another one of these too me. With the CDC just there doing its usual thing too.

    I read the conference thing, hoping to see a sign of shift, of some miracle but just see the same old thing eg researchers needing and wanting funding and things being held back due to that while the CDC sits there and makes out nothing is wrong. Reading this just made me feel dismal, along with all the false hope it may of made some feel.

    Thanks thou to the one who went to the effort to report it.
     
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