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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Article: Stars Not Aligning Any More: CFS NIH Grant Panel (SEP) Reverts, McClure on Board

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Feb 3, 2011.

  1. Cloud

    Cloud Guest

    All those fax's and emails paid off!!!
     
  2. leela

    leela Slow But Hopeful

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    All I got was a form letter acknowledgment of receipt from Sebelius' office taking the opportunity to praise themsleves for all the wonderful things they do there. I could write an angry letter on just about every point that is touted there. But I won't.
    I'm sure everyone else got this too:

     
  3. Sean

    Sean Senior Member

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    Are you serious?

    Maybe because the amount of radiation they emit is a tiny fraction of the dose you will get from a minor x-ray, or from simply flying in a plane at 30 000 ft (where you have less protection from the thinner atmosphere against incoming natural cosmic radiation). Maybe that is why nobody (who knows what they are talking about) is concerned.

    If you want to argue that these scanners are a serious privacy problem, probably ineffectual in stopping terrorism, and the government has overstepped their legitimate powers in introducing them, I am inclined to agree with you.

    But the conspiracy theory stuff about sterilising and killing people? That is getting seriously loony, and does the ME/CFS cause no favours at all.
     
  4. WillowJ

    WillowJ Senior Member

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    Fie. I agree with you about the points.

    Hopefully when it gets to be business hours someone will actually read the emails and respond to what was said.
     
  5. leela

    leela Slow But Hopeful

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    McCLure is Out!

    Now I get your edit, Cloud! (Couldnt figure it out at first!) I hope we can discover who to thank for this (besides our selves <wink>). I can't imagine how she'd even want to sit on that panel, considering her stance on CFS.

    Well, sigh of relief, and maybe now we can oust a dentist or two....

    http://forums.aboutmecfs.org/showth...re-States-She-s-Withdrawn-From-NIH-SEP-Panel-!
     
  6. eric_s

    eric_s Senior Member

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    I've never heard about MESA before. Now i've seen that the CCC documents are hosted on their site. Are they active and what are they doing, what are they about?

    Seems we were lucky and the Myra situation has resolved itself for whatever reason.

    But i think it's important there is an organisation that is aware of all those decisions inside the administration, like when such a panel is set up or somebody is replaced etc. And will try to get information about the possible outcome, before it actually happens and start to advocate, if necessary.
    If the CAA is not doing this, then another org should.

    About that letter campaign, since the CAA is no longer membership based, maybe the other, membership based orgs could try to set up a network that could "deliver" a big number of letters from their members and followers and then add even more by advertising on the forums. I'm pretty sure there will be a situation in the future where something like this would be needed, so it might be a good thing to set up such a structure for cooperations/campagins by those smaller orgs, like state orgs etc.

    For such a letter campagin, in each letter the sender could put a photo and maybe another photo from before that person got CFS and write some about their story. Then when some person from that agency would come outside (they can't possibly ignore this), we would ask them to open and read some of them. They would have to look at the photos, make comments etc. all in front of the cameras. That's how i'm imagining it.
     
  7. SilverbladeTE

    SilverbladeTE Senior Member

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    What we need is a major ME outbreak in a bunch of rich, useless, old tossers whom the world won't miss and will panic and force change due to their clout
    ie, politiicans! :p
     
  8. jspotila

    jspotila Senior Member

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    This is NOT the Association's position. The Association funded the Lights' work on the ion channel receptors, Broderick's work on immune modeling (which secured $4.5 million in federal funding, btw), and much more. There is a long list of biological findings, and the Association does not emphasize one to the exclusion of another.
     
  9. Cloud

    Cloud Guest

    Lol, are you really surprised that I might share something insensible Leela? But ya, it was about Mclure steeping down. I frequent several ME/CFS forums where lots of people (me too) were pounding them with fax's and emails protesting her appointment to the panel.
     
  10. free at last

    free at last Senior Member

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    Well done everyone,the emails look like they may have drawn to much negative attention to the position.Not sure if more pressure is pushing your luck i suspect that it is, but hey you never know.
    Just two words left
    Bye Myra
     
  11. Gert

    Gert

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    People like you my freind told me I was looney when I wrote comments telling them it looked like the worlds economy was going to be deliberately collapsed about 18 months before it happened. There were things happening like the removal of the uptick rule a 70 year old law introduced after the 1929 crash to prevent short selling that the media just were not telling people that some people on the internet had access to.
    Funny the press told us nothing about what was in store even though they plenty of access to the information yet people are still listening to the press and not the people who warned it would happen who had been treated like nutters.

    Goldman Sachs have been given an exclusive dispensation that allows them to control the commodities market. The recent surge in food prices was not due to a shortage but was actually caused by their manipulation of that market for their own benfit. Durning that shoapprox 200 million people died of starvation. They have denied blame and refuse to answer this accusation.


    Do some research on Eugenics and the Rockefellers before you make accusations of conspiracy theories.
    There is quite a lot of factual information about their historical funding of eugenics societies and their current connection with population control. People who were in the original US Eugenics movement funded by the Rockefellers transferred into the population council which was again funded by the Rockefellers. And there are some nasty studies funded by the rockefellers into vacines. I havent the energy to elabortate but take a look before you blindly believe what the press tell you.

    There is an entry into the US congressional record of 1917 by a man called Oscar Calloway that in 1915 JP Morgan commissioned a study into how many Newspapers it would need to buy to control the press. They ended up buying 25 of the most influencial US newspapers and under the umbrella of CFR now control a large part of the worlds media. Be very wary of the press as it is not free like they tell you.

    The people who caused the econimic meltdown are still in power when they should be in jail. You are in for a shock my friend like I just got. New Zealand is moving rapidly towards a police state. We are going to have trials without Juries, the police and 70 government agencies including the meat board allowed to put a camera in your home without a warrant for up to three days and longer with a warrant. The right to silence we have had for eons is set to go, all this in the space of a few months. Our internet providers now record all our emails and web surfing which it gives to the FBI. For our protection I dont think so.

    You call me conspiracy theorist. I say there is a conspiracy.

    Heres a quote from
    Between Two Ages: America's Role in the Technetronic Era, 1970 by Zbigniew Brzezinski

    "The technotronic era involves the gradual appearance of a more controlled society. Such a society would be dominated by an elite, unrestrained by traditional values. Soon it will be possible to assert almost continuous surveillance over every citizen and maintain up-to-date complete files containing even the most personal information about the citizen. These files will be subject to instantaneous retrieval by the authorities. "

    Brzezinski was foreign policy advisor to Jimmy carter, helped form the Trilaterals Commisson with David Rockefeller who in his own autobiography admits to working towards a world government. He was a lecturer when Obama went to Columbia Universtity and many say was Obamas mentor.
    -

    "For more than a century ideological extremists at either end of the political spectrum have seized upon well-publicized incidents such as my encounter with Castro to attack the Rockefeller family for the inordinate influence they claim we wield over American political and economic institutions. Some even believe we are part of a secret cabal working against the best interests of the United States, characterizing my family and me as internationalists and of conspiring with others around the world to build a more integrated global political and economic structure one world, if you will.

    If thats the charge, I stand guilty, and I am proud of it." -David Rockefeller, from the 2002 edition of his autobiography Memoirs."

    I have left a space for emphasis but the text is continuos.

    There are loads more of these sort of quotes from the weathy elites in their books and some before congress but funny we don't hear about them in the News. I wonder why? Could it be because they own the press. I am now at the stage when I hear something on TV that sounds reasonable I check it and most often find it is a half truth designed to mislead or a complete lie.

    I could go on and on with much more evidence than this but this is not the forum for it.
     
  12. leela

    leela Slow But Hopeful

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    Hey, Gert, why don't you move this convo to another thread? I'm sure it will get some heated action, and deserves a space of its own, as does this one.
     
  13. WillowJ

    WillowJ Senior Member

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    I'm glad to hear you don't consider this the CAA's position, but that's definitely how the letter to the congress goes, by saying that the main genetic finding is HPA axis stuff. I knew about your funding of the Lights' work so I was a little shocked. Can you have someone check on this and edit it? The bad thing is that I can't use the CAA template and edit it to what I want to say.

    http://www.capwiz.com/cfids/issues/alert/?alertid=19589536&type=ML

    See? No ion channels or immune system there, which are consistently found in gene studies (all except the CDC studies which restrict themselves to those genes which could be involved in a stress-related disorder, such as HPA axis and sympathetic nervous system).

    No NK cells or anything like that in any of the other points, either.

    However, I do see XMRV complete with mention of the Lombardi article, which I don't remember from last time I checked.
     
  14. Gert

    Gert

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    Hey Leela

    Would do it if I were up to the job. :In bed:
    Also it does leave us open to the finger pointers who might lead other less informed people to think we are nutters.
     
  15. pine108kell

    pine108kell Senior Member

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    I know I should let this die, but since this thread is probably about dead anyway and I have too much spare time so I will comment. If one wants to debate the health, constitutional and privacy issues of the scanners that is a discussion of merit, but has nothing at all to do with this thread. One could open up a separate discussion of this issue on the forum.

    But it goes way, way further than that. Gert was claiming the only purpose of the scanners was so that the government could kill and sterilize people. That is ridiculous. The purpose of the scanners, whether it is effective, safe or constitutional or not, is to protect citizens from terrorism. You may disagree with the methods, and I have concerns of my own, but the scanner system was not put in place to kill people (even if somehow that was an unintended side effect--which, again would be a totally different topic to discuss not one that is about a CFS panel).

    Government makes enough legitimate mistakes of neglect that need our concern, including those of us neglected with this disease, without having to make new ludicrous ones up. It doesn't help our cause, and, yes, it does make us look like "nutters" to suggest the INTENT of the scanners is to kill.
     
  16. WillowJ

    WillowJ Senior Member

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    I dislike the fact that the ME/CFS community is divisive and I think I added to that with the my first comment here. I could have approached my concerns differently. I apologize for the wrong approach.
     
  17. SilverbladeTE

    SilverbladeTE Senior Member

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    Since no one, NO ONE, actually know for sure what exactly causes ME/CFS, that uncertainty causes division :/
    XMRV seems mostly likely by a mile though at present.

    "Stop hitting me with them negative waves Moriarity...lets be beautiful to one another!" ;)
     
  18. Cloud

    Cloud Guest



    Seems the best route given the history of this disease. Although funding the most promising research focus is essential, we can't rule anything out other than psychogenic causes.

    Just a bit off focus, I will add....For myself the HPA malfunction was secondary to viral infection of the CNS (viral encephalitis). I know this because after a year on heavy antiviral tx, my HPA function has dramatically improved. HPA malfunction for me is but a symptom, not an etiology.

    Jenny, can you link me to the latest on "Broderick's work on immune modeling"
     
  19. Sean

    Sean Senior Member

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    Gert

    All I can say is that if the government's (or Rockefeller's, or whoever's) intention with these scanners is really as you claim, then they picked a spectacularly ineffectual way of achieving it.
     

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