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Another CDC/CFS website change

Discussion in 'General ME/CFS News' started by JMK, Aug 9, 2010.

  1. JMK

    JMK

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    Has anyone noticed that the CDC has changed alot of their CFS info again? More CYA. For example, I no longer see the part where they tell doctors to not do specific tests for us (tilt-table, co-infections, etc.).

    They now say, "As of today, one thing is certain: there are no immune disorders in CFS patients on the scale traditionally associated with disease." Aren't they tricky little wordsters!
    They also name infectious agents, immunology, NMH, HPA axis dysfunction, and nutritional deficienies as possible causes. They also state, "People with CFS may show signs of depression, but not have depression." I'm pretty sure that's a new one for them!
    They state,"The recent report on finding XMRV in persons with CFS is awaiting confirmation from other researchers and in other populations."
     
  2. zoe.a.m.

    zoe.a.m. Senior Member

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    I don't understand the "there are no immune disorders in CFS patients on the scale traditionally associated with disease" part. Not at all. I'd like an example or definition for "traditionally associated" and more information from them about the scale of immune disorders that are found in the population.
     
  3. floydguy

    floydguy Senior Member

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    Is anyone capturing these web site changes with dates, ie screen captures? I hope so. Is somebody hacking their site?
     
  4. anciendaze

    anciendaze Senior Member

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    Sounds like they have now reached the point Peterson and Cheney had reached when they decided to call CDC 25 years ago. It took several go arounds to get past the idea that they were blaming EBV for the illness, when they were merely using results on antibody titers to EBV as an indicator of immune function. Those results indicated an unknown viral infection, plus an inability to keep EBV latent. Hmmm.. could be a retrovirus.
    Those sneaky little patients! Confusing honest doctors with symptoms that could be mistaken for depression. What's more, they caused so much confusion, those poor doctors accidentally wrote a definition which includes large numbers of people who are really depressed in their "well-defined cohort." No wonder research went nowhere!
    Sounds like the best evidence yet that the Alter and Lo paper really is in press. Could we be seeing tiny cracks in a federal monolith?
     
  5. Otis

    Otis Señor Mumbler

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    There are free tools available to download websites.
     
  6. sensing progress

    sensing progress Senior Member

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    I was thinking the same!
     
  7. Doogle

    Doogle Senior Member

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    It still carries the July 21st date when most of the website was updated.
     
  8. xrayspex

    xrayspex Senior Member

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    looks promising to me too
     
  9. cfssufferer

    cfssufferer

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    It does seem strange that they changed their website on the 21st of July 2010 and again recently. They wouldn’t have changed their website on the 21st of July if they were going to completely change it again a few weeks later. To me this indicates that something has happened between the 21st of July and today.

    Also it does seem bizarre for the website to still have the July 21st date on it. I don’t know what to make of this other than maybe someone forgot to change the updated and reviewed date. Despite the CDC’s shady history, I’m sure that at least one person has saved the website with its original changes which means they can’t make out they updated it to its present state on the 21st of July. I have also searched a few archived page websites and Google and Yahoo cached pages but I can’t find what the CDC website looked like previously (After the 21st of July and before today.) Can anyone find what the website looked like after the 21st of July and before they changed it again recently?
     
  10. parvofighter

    parvofighter Senior Member

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    Power-shift @ CDC?

    I find this really encouraging too.
    Seems to me the winds of change may be blowing, eh? I wouldn't be at all surprised if there is a massive power struggle at the CDC as the lab specialists participating in the contaminated-blood-review who "get" the retroviral science, duke it out with the psychodinosaurs. Very interesting times. Time to clean up house at the CDC. I'm really trying, but do find it difficult to muster empathy for the heads that are going to roll.
     
  11. SOC

    SOC Senior Member

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    I admire your goodness of heart -- I can't even manage to try. ;)
     
  12. acer2000

    acer2000 Senior Member

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    Well that seems significant now doesn't it? Its actually an accurate characterization of the situation.
     
  13. Anika

    Anika Senior Member

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    I don't think there's been a change to the CDC page regarding diagnostic tests since the July 21 update (and the language about diagnostic tests looks to me to be the same they've had on the site for some time). With the reorganization of the CFS website, some old language has been shifted around or relabeled so it can be hard to compare, even if you go back to an older archived version of the site.

    Re diagnostic tests: See http://www.cdc.gov/cfs/general/diagnosis/testing.html .

    Excerpt:

    No diagnostic tests for infectious agents, such as Epstein-Barr virus, enteroviruses, retroviruses, human herpesvirus 6, Candida albicans, and Mycoplasma incognita, are diagnostic for CFS and as such should not be used (except to identify an illness that would exclude a CFS diagnosis, such as mononucleosis). In addition, no immunologic tests, including cell profiling tests such as measurements of natural killer cell (NK) number or function, cytokine tests (e.g., interleukin-1, interleukin-6, or interferon), or cell marker tests (e.g., CD25 or CD16), have ever been shown to have value for diagnosing CFS. Other tests that must be regarded as experimental for making the diagnosis of CFS include the tilt table test for NMH, and imaging techniques such as MRI, PET-scan, or SPECT-scan. Reports of a pathway marker for CFS as well as a urine marker for CFS are undergoing further study; however, neither is considered useful for diagnosis at this time.

    The General Information page that includes the statement about "no immune disorders on the scale" traditionally associated with disease, among other things, does look new to me. But, there are parts of the "old" website (especially deeper into the provider materials) that I wasn't that familiar with before, so it might have been somewhere on the old page.

    The website redesign for CFS is something they'd been talking about for a while, I think - at least last fall. Things like website redesign take a while to do, and aren't the top priority of the research folks. They were probably in someone's annual job objectives to get done in the current fiscal year (for their performance review).

    Although I had been hoping the cost for the website changes didn't come out of the CFS research budget - I am reconsidering - maybe it would be better that they have less money for their so-called "CFS research", since it's all using the Reeves definition and thus a massively wasted opportunity.
     
  14. Sean

    Sean Senior Member

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    Interesting times, indeed.

    Agree with parvo, chances are there is a serious brawl going on behind the scenes at the CDC between the old and the new guards, a real fight to the professional death. Oh to be a fly on the wall at the informal, off-the-record chats going on in the hallways and lunch rooms. The internal politics must be fascinating, in a macabre kind of way.
     
  15. V99

    V99 *****

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    I know, I know. Judy Poppins just blew in.
     
  16. anciendaze

    anciendaze Senior Member

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    Has anyone tried the wayback machine to see how their site has changed over time? I would follow this up myself if I wasn't stuck dealing with a more immediate personal problem. (Anyone else have a problem with multitasking?)
     
  17. taniaaust1

    taniaaust1

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    They've had that on their site for ages...

    The other things thou i think are new. ..people with CFS may show signs of depression but not have depression. I really wonder why they said that.
     
  18. JMK

    JMK

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    I do not understand how they can get away with naming infectious agents, NMH, etc. as possible causes and then turn around and tell doctors NOT to test for them. Looks like it's time for me to pick up the phone and make a nuisance of myself.
     
  19. illsince1977

    illsince1977 A shadow of my former self

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    To whom (will you make a nuisance of yourself) ?
     
  20. sensing progress

    sensing progress Senior Member

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    I would presume the CDC.
     

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