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Time for the Big Talk. How's the CAA doing?

Discussion in 'General ME/CFS News' started by hvs, Oct 26, 2009.

  1. gracenote

    gracenote All shall be well . . .

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  2. flex

    flex *****

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    [video=youtube;6tE5hyUjcd4]http://www.youtube.com/watch?v=6tE5hyUjcd4[/video]
  3. Dolphin

    Dolphin Senior Member

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    Thanks.
    Also CFS is one of only down as $0 million for American Recovery & Reinvestment Act (ARRA) in 2009 (I'm sure this has been noted before somewhere). Don't know where that is on $0-$499,999 - anyone know?
    FMS got $2m under that.

    For 2010, CFS and FMS are currently blank for that money but so are 24 others. Don't know if that will change by the end of the year.
  4. Dolphin

    Dolphin Senior Member

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    Dr Lapp slide extract:
    Here is a quick comment from a summary of an exercise study:

    http://www.meresearch.org.uk/research/projects/malaise.html

  5. Dolphin

    Dolphin Senior Member

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    Two points.

    Firstly, it doesn't say that people generally reach an activity/exercise plateau.

    Also there is no evidence that these exercises allow people to do activities of daily living (ADLs) who couldn't do them before. It's basically speculation. One can't necessarily extrapolate from healthy people. For severely affected people, stretching exercises might be like a yoga session (say) for somebody a bit less severely affected with ME/CFS. Surveys show that plenty of people with ME can have problems with yoga. For example, in the ME Association survey, of 812 people who reported trying yoga, 20.8% reported being made slightly worse and a further 7.3% reported being made much worse http://www.meassociation.org.uk/images/stories/2010_survey_report_lo-res.pdf .

    I think there is a reasonable chance such people (people struggling to do ADLs who do extra exercises) might develop various types of repetitive strain problems. I developed all sorts of such problems 17 years ago. The body isn't behaving normally.

    One of the main advantages of this slide show is that one can see Dr. Lapp's input into the CME (or at least the bits he strongly agrees with).

    So just like with Dr. Bateman, I don't think Dr. Lapp should be involved in preparing management programs on ME/CFS - unless he is heavily outnumbered by people who disagree with him.
  6. Roy S

    Roy S former DC ME/CFS lobbyist

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    Jennie,

    You've said that the CAA is spending substantial resources on XMRV. Exactly what does that mean?

    Cort has stated that the CAA is funding a study on XMRV. Is that right, or is Glaxo Smith Kline funding it, or both? Is GSK paying for the samples from the CAA's Biobank?

    20 years ago the CAA would have offered funding to the WPI after the science paper was published and most likely before that. Has any funding been offered?

    I will ask you again if Kim McCleary has ever offered to help the WPI lobby on Capitol Hill.
  7. Robyn

    Robyn *****

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    xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
  8. jspotila

    jspotila Senior Member

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    What the Association is doing on XMRV: http://cfids.org/cfidslink/2010/010607.asp#3r

    What the Association is doing re: federal affairs: http://cfids.org/cfidslink/2010/010607.asp#1a

    Collaborating with other organizations: http://cfids.org/cfidslink/2010/010607.asp#4e

    Priorities in the Association's research program: http://cfids.org/cfidslink/2010/010607.asp#1r

    For most of the Association's history, we have not "offered" funding to any researcher without receiving an application, and having applications peer-reviewed by a Scientific Advisory Committee. Regarding denying applications for XMRV research: http://cfids.org/cfidslink/2010/010607.asp#2r

    Regarding the current collaboration involving the SolveCFS BioBank, I am bound by the Association's confidentiality agreements, so I can only refer you to the FAQ for the BioBank: http://cfids.org/cfidslink/2010/040701.asp
  9. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Keep Going CAA!!

    Vernon did a good job in telling it like it is about the CDC XMRV study. McCleary also pointed out that the fact CDC studied only three sudden onset patients was a red flag. Now CAA has to keep it up.

    Now Vernon still has to come out strongly against the Reeves criteria of which she was an author. This is crucial now. CDC is firing everything the can at us. We need CAA to really let them have it (the truth) now. Jenny Spotila said at one point on the CAA thread something to the effect of "what're we supposed to do, try to interest the media which is totally uninterested in us?" Well now interest is brewing and will let loose once the FDA study comes out. CAA has to take advantage of this and totally expose our oppressors! Absolutely no excuses now!
  10. Otis

    Otis Señor Mumbler

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    Time time is now

    Agree Justin that the CAA has a big help with this CDC paper and that it's now or never. We absolutely need all hands on deck.

    The latest XMRV web page from the CDC is infuriating. They're declaring game over, no XMRV, end of story.

    Please see this if your blood pressure isn't too high.

    The original Alter paper needs to see the light of day or we may get strung along circa 1991.
  11. Jerry S

    Jerry S Senior Member

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    It really gets to me also, Otis. Their assumed tone of authority is maddening. They cited their own tainted "research" as if it were gospel. They have no respect for science -- only authority.
  12. shiso

    shiso Senior Member

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    Just read the CDC page. I agree with Otis's and Jerry's assessments - it's outrageous how they put their whitewash study in the most credible and conclusive light (at the same time covering their a**es by subtle disclaimers saying there might be factors why others may come to other conclusions). They know how respected they are, and they know how to maximize on it.

    The fact remains that the already more than skeptical medical establishment nationwide and worldwide look to CDC for authority and guidance on "controversial" areas like XMRV and ME/CFS and they have no incentive not to believe and go along with what the CDC says, since we're an inconvenient patient population. We, on the other hand, desperately need competent, devoted and credible people on our side to counter CDC's agenda when it comes to this disease.

    I'm posting this on this thread a) to again thank Dr. Vernon for delivering her swift criticism of the CDC study; and b) because I think CAA has been showing more responsiveness to the patient community and venturing out of their comfort zone recently, even in the relatively short time I've been sick, and I hope they will continue to be as aggressive as possible and sensitive to politics and timing - especially at this critical juncture when we have the attention of the government, the AABB, and media (at least WSJ - a good one if you ask me) via XMRV.

    Who knows how long the medical research funding gatekeepers will stay interested (as it is, they're more interested in XMRV's possible role in more politically lucrative diseases than ME/CFS), before they turn their backs again?
  13. Jerry S

    Jerry S Senior Member

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    Excellent comment, shiso.
  14. Dolphin

    Dolphin Senior Member

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    And given the joke definition they used to define patients in this study, they "don't have a leg to stand on".

    There's a petition against the empiric criteria for CFS (Reeves, 2005) that the CDC are using for research at: http://www.ipetitions.com/petition/empirical_defn_and_cfs_research/ . It was also used for the two childhood abuse studies and other studies in recent years.
  15. Jerry S

    Jerry S Senior Member

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    Yet, the CDC claims on it's website http://www.cdc.gov/ncidod/dhqp/bp_xmrv_overview.html that the patients met 1994 Fukuda.

    This is not case. These are Reeves' "empirical definition" patients. Their own paper admits as much.
  16. Dolphin

    Dolphin Senior Member

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    They claim they are simply operationalizing the 1994 definition.
    That is, explicitly say what the cut-off points are on specific questionnaires.

    However, if one looks at how much the prevalence rate from their random number studies jumped: 235 per 100,000 to 2540 per 100,000 (10.8 times the amount) using similar methodology, one can see that the empiric criteria are bringing in lots of new people. And Leonard Jason has done research which shows they're not even very sensitive i.e. not all of the group in the previous study would get in with the new criteria.
  17. dannybex

    dannybex Senior Member

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    It's interesting, and quite reassuring (to me anyway) that no major news organization (except the WSJ blog) has reported the CDC's findings. A google news search turns up the WSJ and a few other blogs...that's it.

    Their "study" will be toast as the other positive studies come in...within the next few months.
  18. VillageLife

    VillageLife Senior Member

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  19. taniaaust1

    taniaaust1 Senior Member

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    from the CDC site on XMRV and CFS

    "About the Study

    This paper by CDC scientists and colleagues is the first U.S. report on XMRV and CFS since the October 2009 publication in Science that suggested a possible link between this virus and CFS. "

    Dont you just love how they report they are the first U.S. report since the original paper... seeing the other studies got held, just so they could possibly post theirs first and go about saying so. It's screaming of conspiratory. I actually thought that this was all going to happen and that the CDC study was going to be put out first as soon as i heard about the other studies being held.

    Somewhere in high places, they want to mislead the public as far as CFS is concerned (just like they've always done)
  20. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Nice to see in the latest CFIDS Link email newsletter that CAA is trying to get CDC's lies re the XMRV and ME off of CDC webpage. Please refuse to stand for these lies!

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