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NCF's Strange (?) Good (?) New Research

Discussion in 'Latest ME/CFS Research' started by Cort, Aug 21, 2009.

  1. Cort

    Cort Phoenix Rising Founder

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    The National CFIDS Association's latest funded research is a doozy. You have to say one thing about the organization - they are looking in corners no one else is looking and they do have the strength of their convictions. They did this before with ciguatoxin and it worked out - partially. They found that chronic fatigue syndrome patients had very high levels of the epitope but cancer and other patients had high levels as well: it was definitely not a marker for ME/CFS. Still even if it wasn't specific to this disease they may have stumbled onto an important inflammatory marker and it translated into an NIH grant.

    Now they're funding basic research into processes involved in acute myeloid leukemia and a disorder called myelodysplasia. Myelodysplasia is a bone marrow stem cell disorder that often results in anemia and low blood cell production. People who get it have a good chance of coming down with leukemia (but not ME/CFS?). It effects slightly more men than women and causes these symptoms:

    • Anemia—chronic tiredness, shortness of breath, chilled sensation, sometimes chest pain
    • Neutropenia (low neutrophil count) —increased susceptibility to infection
    • Thrombocytopenia (low platelet count) —increased susceptibility to bleeding and ecchymosis (bruising), as well as subcutaneous hemorrhaging resulting in purpura or petechia[2]

    One would think the low blood volume problems would fit in here.

    The elastase connection is what's really intriguing to the NCF. They're funding research to determine just how strong that connection is. Elastase has lost a little of its bloom lately. As I remember it did not appear to play a role in the postexertional problems in ME/CFS in one study but it's still a possible factor that's for sure and other studies suggest it could be a factor. This is basic, basic research - no CFS (or any other) patients are involved. this is the kind of research you do when you're sure that you've identified a fundamental factor in this disease. Is elastase that factor? Only time will tell.

    The NCF is so convinced that the processes that lead to AML are also present in ME/CFS that they're funding research on botanicals that may help inhibit AML. They're out on the skinny branches that's for sure. They have found some markers that apparently suggest both diseases have something in common. Intriguing stuff!

    http://www.ncf-net.org/forum/2009spring1.htm
     
  2. Dolphin

    Dolphin Senior Member

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    I have some doubts about too much of a ME/CFS research budget being spent on non-ME/CFS research as such (i.e. not involving patients with the illness or an animal model of the illness) esp. when there is so little good quality research going on into ME/CFS worldwide. If it were a Cancer or AIDS (say) charity funding leftfield research it would be a bit different.
     
  3. dannybex

    dannybex Senior Member

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    Hmmm...

    I'm stunned that the NCF is actually funding research that involves plain ol' botanicals, and not some wonder drug...that indeed is encouraging and intriguing, coming from an organization that is historically (imho) so close-minded and negative about any sort of non-drug treatments -- even the ones that have shown proven benefits in double-blind studies.

    Just also wanted to note that anemia, leukopenia, and thrombocytopenia are all 'side-effects' from klonopin, the drug highly touted by Cheney...
     
  4. Cort

    Cort Phoenix Rising Founder

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    I agree Tom. The NCF is doing this differently than most groups. Instead of using the scientific community using their collective knowledge to bring them proposals the NCF 'Boardroom' decides what they want studied and then goes out and pays researchers to do it.

    I think the NCF could amend the statement to say very few research funding organizations do this; the NIH doesn't for instance. NCF supporters (and all of us really) will, of course, hope that that organizations boardroom knows what they're doing.
     
  5. Dolphin

    Dolphin Senior Member

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    But that, as I say, isn't the only distinction (or what I have most questions over). Most of this year's research grants don't involve samples from ME/CFS patients.
     
  6. Cort

    Cort Phoenix Rising Founder

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    I know I added my own ideas there.;) Sorry to imply they were yours as well :)
     
  7. Dolphin

    Dolphin Senior Member

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    No prob. Good you highlighted it. I had been surprised when I read about the grants initially and then surprised when nobody mentioned it.
     
  8. citybug

    citybug Senior Member

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    Doesn't seem such a far out topic now.
     
  9. acer2000

    acer2000 Senior Member

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    Maybe what they have in common is "XMRV" - a cousin of Murine "Leukemia" Virus?
     
  10. Mithriel

    Mithriel Senior Member

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    CFS patients are such a mixed bunch you are never sure exactly what disease any of them have, so I suppose it makes sense to work out something like what elastase does in a group which are definitely homogeneous.

    Then you can say "This is what elastase does, so it must be doing it if the levels are wrong in CFS too"

    It's like sneaking it past the "CFS censors"

    It's like all the basic research being done on XMRV in prostrate cancer. The basic biology is being worked out in mainstream science and medicine which would not give the time of day to a CFS patient.

    Mithriel
     
  11. dannybex

    dannybex Senior Member

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    Well...

    It should be noted that the NCF (at least initially) had a very negative view of the XMRV findings, and were even suspicious of the WPI's motives (according to a friend who subscribed to their newsletter). But then again they're negative about anything (imo) that isn't a result of their own funding/research.

    This was back in Nov-Dec. Perhaps they've changed their opinion now...???
     

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