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Article: The Stars Begin to Align at the NIH: A CFS Review Panel. For CFS!

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Nov 12, 2010.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. 3CFIDS@ourhouse

    3CFIDS@ourhouse still me

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    Thank you for this very encouraging article! I am pinching myself- is it possible to have all these "stars" on the panel??? :victory:
  3. Cort

    Cort Phoenix Rising Founder

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    I was just astonished when Bob emailed the makeup of the CFS SEP panel. Except for XMRV I don't think I've been as shocked as that for I don't know how long. The panel has been such a PROBLEM for so long - to see it shift like this is just amazing.

    This all really shows, I think, the power XMRV has had to wake up the federal govt and how important it is to get the right people in the right jobs. Some parts of the govt seem to responding to long unaddressed concerns.

    It'll really be interesting to see how well Dr. Mangan does as the leader of the Trans NIH Working Group. If he can turn that group around - they are our key to funding at the NIH.
  4. Sean

    Sean Senior Member

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    You see, folks, sometimes things can change for the better.

    Though I have to ask what a dentist is doing heading this panel (no disrespect to dentists). It also would be strongly preferable that Mr Jones was not on it.

    But hey, it's still a big win. :victory:
  5. HowToEscape?

    HowToEscape? Senior Member

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    WTF was a *dentist* doing on, much less heading this panel?

    For anyone who's worked in a bureaucratic sort of organization it's obvious - somebody's buddy who is unqualified, too lazy and too much of a grifter to do honest work get's a free paycheck for doing basically nothing, and they get to pull other leeches onto the gravy train. When you see this there is generally some ugly stuff going on. Yes I'm being blunt, but I wasn't born yesterday and this is pretty freakin' obvious. You may as well hand out CFS grants to Jiffy Lube attendants as to dentists from Gainsville.
  6. Cort

    Cort Phoenix Rising Founder

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    Dr. Hoffeld was a specialist in dentistry and he recruited people he knew to be on the panel. The leader of the panel appears to be the last remnants of Dr. Hoffelds reign. He has no extra votes - the people on the panel will be deciding which grants get accepted - so if you can look past the one dentist on the panel and all all the immunologists, pathologists - we're and the CFS research community in pretty darn good shape now (unless they want to study our teeth). :cool:
  7. lancelot

    lancelot Senior Member

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    Encouraging article. thank you cort!

    Do you know anything else about Dr Mangan? his bio, specialty, personal/professional interest in CFS, good guy/bad guy in CFS? I sure hope he's a star as the head of the new NIH CFS program. We really need a good guy at the NIH. I don't have much hope in the CDC's future CFS director.
  8. sensing progress

    sensing progress Senior Member

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    One of the first things that they should do is approve the grant requests from Dr. Lights (plural) at Univ of Utah. I saw in the OFFER video from Dr. Bateman that their extremely promising research had had its grant requests denied! She called this "extremely discouraging".
  9. Cort

    Cort Phoenix Rising Founder

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    Good god. Stuff like that is like a stab in the heart! Its painful!! It's sooooo disillusioning! It's like hearing the CDC never even inquired into the repeat exercise studies. Or the Dubbo project getting turned down three times! How could anybody turn down THAT project THREE times! The researchers are so weary! They've been beaten down too.....

    The good news is that I can't imagine but that Dr. Lights grant won't go zooming through. I hope Dr. Light is dusting off his proposal as we speak. I really think there's Light at the end of this tunnel. :victory:

    (Nice avatar by the way sensing...the tip of the iceberg - I love it! :D)
  10. Cort

    Cort Phoenix Rising Founder

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    I don't have anything on him. All I know is that he met with patients for quite awhile after the CFSAC meeting, he's promised to push things forward, he's trying to enlarge the working group, he's redoing the website..he's off to a good start but he has a tough job. The NIH has been almost as bad as the CDC....after Strauss quit the CFS Director position was open, as I remember, for years...it was never filled - apparently because no one in the entire NIH wanted it...(we're so popular :))...

    We'll really see in the big events of the next year or so; the State of the Knowledge Workshop and if he can get a good hefty RFA for us.....Ultimately what we want are Centers of Excellence - they're not that expensive - many disorders have them - if he can get the Trans NIH Working Group to finally cough up some real money - we'll be in good shape....We shall see. He's got to be a upgrade for Dr. Hanna.
  11. lancelot

    lancelot Senior Member

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    Are all Centers of Excellence government funded institutions? Is the Whitmore-Peterson Institute still planning to be the first CFS Center of Excellence?
  12. usedtobeperkytina

    usedtobeperkytina Senior Member

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    I also think this shows not only what a virus can do, but it shows what face to face conversations can do.

    Thank you fellow patients for pushing past the filters and getting that sit-down with NIH folks.

    I am proud.

    Go team.

    Tina
  13. WillBeatCFS

    WillBeatCFS

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    I've got to believe the email/fax/phone campaign to Director Collins was involved too. If we continue to speak loudly and collectively, I think we can do more. My vote is to completely closed down the CDC's failed program (especially it's "new" website, which is so bad as to be deceptive). :headache: One good program (wiht funding) can do more than two poor programs any day.
  14. Sasha

    Sasha Fine, thank you

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    Dentists... there were dentists... :confused:
  15. Berthe

    Berthe Senior Member

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    God bless Bob, for all the energy he puts in making us happy. :victory:
  16. Jemal

    Jemal Senior Member

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    It's great to see such changes coming. Change is in the air and our time is slowly coming I think.

    I did a ROFL when you said that there were several dentists in that group. But I guess I do have some dental hygiene issues...
  17. hidlyn

    hidlyn

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    Cort - who places these people on the review panel? I am a bit fuzzy on that one. Is it the head of the review panel? Or an NIH person?
  18. George

    George waitin' fer rabbits

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    wow!

    wow!
  19. psonnett

    psonnett

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    Thanks Cort for being the bearer of such great news. How exciting to see the names of these stars on the panel. Either I've died and gone to heaven, or this new drug I'm taking has some wonderful side effects! The is the best news I've heard in a long time. It feels like we really have turned some kind of a corner with ME/CFS, and we can almost see the light at the end of the tunnel.

    Thank you to everyone who continues to push ahead despite all the obstacles. Advocacy works!

    Double Wow!!!

    Pat
  20. suejackson

    suejackson

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    That is all great news, Cort!! The new panel looks perfect (other than the dentist leading it). Thanks for reporting on this significant improvement at the NIH for us!

    Sue

    www.livewithcfs.blogspot.com

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