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If you don't believe in conspiracy theories...

Discussion in 'Action Alerts and Advocacy' started by Athene, Jul 5, 2010.

  1. Athene

    Athene ihateticks.me

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    Have you heard of the Tuskegee Syphilis Experiment?

    I think the US government is using CFS sufferers in a scientific experiment of the same nature.

    http://en.wikipedia.org/wiki/Tuskegee_syphilis_experiment

    The Tuskegee syphilis experiment[1] (also known as the Tuskegee syphilis study or Public Health Service syphilis study) was a clinical study conducted between 1932 and 1972 in Tuskegee, Alabama, by the U.S. Public Health Service. Investigators recruited 399 impoverished African-American sharecroppers with syphilis for research related to the natural progression of the untreated disease...

    By 1947 penicillin had become the standard treatment for syphilis. Choices might have included treating all syphilitic subjects and closing the study, or splitting off a control group for testing with penicillin. Instead, the Tuskegee scientists continued the study, withholding penicillin and information about it from the patients. In addition, scientists prevented participants from accessing syphilis treatment programs available to others in the area. The study continued, under numerous supervisors, until 1972, when a leak to the press resulted in its termination. Victims included numerous men who died of syphilis, wives who contracted the disease, and children born with congenital syphilis
    The Tuskegee Syphilis Study, cited as "arguably the most infamous biomedical research study in U.S. history,"[5] led to the 1979 Belmont Report and the establishment of the Office for Human Research Protections (OHRP).[6] It also led to federal regulation requiring Institutional Review Boards for protection of human subjects in studies involving human subjects. The Office for Human Research Protections (OHRP) manages this responsibility within the US Department of Health and Human Services (HHS)
     
  2. Esther12

    Esther12

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    I think we've been treated badly because of ignorance and stupidity rather than conspiracy. If XMRV is now thought to be significant, then this will be combined with the sort of dishonest face-saving we see in all area of government.

    Saying that, I think that there is now a worrying tendency to see anyone who claims scientists/governments/whatever are intentionally lying to us as a demented conspiracy theorist who is not even worth talking to. Requiring such faith in our institutions before you can even join in the conversation is terrifyingly restrictive, and fails to acknowledge the long history of deceit that is always eventually uncovered once we have greater access to the evidence.

    I don't think they're using CFS in any way equivalent to the Tuskegee Syphilis experiment, but if anyone has good reasons as to why I should change my mind I'd be happy to lsiten.
     
  3. Francelle

    Francelle Senior Member

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    UK M.E records..To Esther12

    Esther12, being from the UK what is your theory about the changed status of M.E. records being unavailable for access until 2070 or thereabouts? Is there, do you think, a credible basis for this change of legislation?

    On the surface of it without knowing the facts, this changed legislation also seems to be verging on hiding something sinister from the general public.
     
  4. Esther12

    Esther12

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    I think it's more likely to be an attempt to hide their stupidity and the prejudiced manner they approached CFS patients. Sometimes that can lead to something of a conspiracy!

    I expect that there is information in those files that is would be highly embarrasing to those involved, but I don't think it's going to be anything like as intentionally malicious as some seem to believe.
     
  5. Galena1

    Galena1

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    Conspiracy theory or not, here in the UK there is a definite reluctance to acknowledge physical causes of ME, whilst at the same time there is plenty of support for psychologically based reasons and, subsequently, lack of appropriate research and treatment.
    Personally, I believe that the current situation revolves around money and the egos of those who are effectively controlling the situation.
    For many years I was/have been involved with a wide range of organisations, including central government, county and city councils, elected 'representatives' (Councillors), police, national and local 'charities' and the press + other (allegedly) altruistic organisations. It has become clear to me that, with only the very rare exception, they will put their own interests before those of anyone else.
    I have contacted the press for support to promote the ME 'cause' - No response, yet they are more than happy to freely promote 'cures/treatments' (Lightning Process and similar).
    The local University has failed to respond to my questioning of their position re blatant promotion of Lightning Process type treatments for ME, despite recent research in the UK discounting the effectiveness of some of what this business offers. The fact that the business offering this treatment rents office space on the University campus couldn't be a contributory factor, could it?
    I have contacted my MP requesting his support for the continuation of the ME All Political Party Group (APPG). No response.
    We all know, from the fairly recent Swine Flu scare, that government can respond if it has the will.
    Clearly, for now at least, the enthusiasm for change remains with the sufferers and a minority of 'outsiders'.
     
  6. Min

    Min Guest

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    The information hidden away by the MRC under the Freedom of Information act seems to me to be be hidden to protect the names of doctors etc involved. When we can be blatantly called the 'undeserving sick of the health service and of society' (by Prof Michael Sharpe, one of the psychiatrists running the PACE trial) it makes me wonder what has been said about us that has to be locked away.

    I believe that there is a deliberate conspiracy to save health insurance companies worldwide, and the UK National health Service, money by stifling all research into the biological cause of ME and by paying unscrupulous 'expert' doctors to pretend it is a somatoform disorder.
     
  7. muffin

    muffin Senior Member

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    I'm going with SINISTER given what the US CDC has done and the 2071 locked UK doc

    No one would be stupid enough to believe that this isn't hiding something quite sinister. You don't lock down 40 pages of a document for 73 years unless there is something so deadly and damaging within that 40 pages that it simply can NOT be released into the public domain. By the year 2071, those involved (Weasel, et al) and the sick and their immediate families (and us) will be long dead. I would bet that the UK government was expecting that whatever got out or whatever they are hiding with their buddy morons at the US CDC would be gone and done with by 2071.

    However, what the Weasel and CDC did not count on was WPI finding that XMRV Retrovirus and forcing open a huge can of worms that the UK and US government did NOT want opened. And I would be most willing to bet that both the UK and US governments are in on this one together. The Weasel and the rest of the sociopath UK shrinks and the Putz Reeves and his band of morons were just too tightly involved in "research". They have worked really hard to cover somthing up. My non-X-files belief is it has something to do with biological warfare and they screwed up and let something get out and into the public. And I further believe it happened longer than just three decades ago. That's only when the CDC killed off any further Retrovirus research. I would bet that had the HIV/AIDS lobby not been so strong the CDC and other Federal health orgs would still be letting people die from HIV/AIDS (the second Retrovirus). It all stinks. Yes there is stupidity, but also something quite sinister. The cat will be out of the bag soon though and both the Weasel and Reeves and others will still be alive to face the music. Soon.


    FOI decision 2008: 40 pages Closed For 73 years - Record Opening Date: 01 Jan 2071

    -" These extracts contain information supplied in confidence by named individuals to the Medical Research Council in relation to applications for research grants and confidential discussions on the selection of candidates. It also contains medical information on named members of the public. The youngest person was aged at least 27 by 1997. The entire piece was previously closed for 50 years"
     
  8. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    Galena,

    Could you contact me PM in relation to what you have written above please - as you may be aware I have submitted an FOI to the University of Bristol in connection with the LP pilot, and I received a response on 17 June.

    You might also be interested in this post here which is an Advertising Standards Authority Adjudication Notice in relation to "Withinspiration".

    Lightning Process instructor/trainer/coach, Alastair Gibson, had already identified himself, on his "Withinspiration" website, as "one of the two practitioners working with the NHS" in connection with the Dr Esther Crawley led pilot study.

    The pilot does not yet have research ethics approval.


    http://www.forums.aboutmecfs.org/sh...tudy-on-Children&p=99417&viewfull=1#post99417

    Suzy
     
  9. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    As submitted to Co-Cure:

    From Suzy Chapman

    05 July 2010


    In connection with:

    Advertising Standards Authority (UK) adjudication on Withinspiration
    (Lightning Process):


    http://www.asa.org.uk/Complaints-an...ions/2010/6/Withinspiration/TF_ADJ_48612.aspx


    It should be noted that:

    Lightning Process instructor/trainer/coach, Alastair Gibson, had already
    identified himself, on his "Withinspiration" website, as "one of the two
    practitioners working with the NHS" in connection with the Dr Esther
    Crawley led pilot study.

    At 29 March, his website had carried this information:

    "Breaking News - NHS and Lightning Process research collaboration.

    "A new pilot study involving the Lightning Process and the NHS has
    been awarded 164,000 for research into the treatment of CFS/ME in children
    and adolescents. Alastair Gibson is one of the two practitioners working
    with the NHS and the young people in this exciting research study. Find out
    more..."

    http://www.withinspiration.co.uk/lightning_process_NHS_research.php


    On 16 May, I submitted a comprehensive FOI request for information to the
    University of Bristol in connection with the LP pilot, and I received a
    response on 17 June. I will update on responses, shortly.

    This pilot does not yet have research ethics approval.

    From FOI, 17 June 2010:

    "The study is currently going through the ethics approval procedure and
    this information is expected to be published around August / September
    2010. We cannot see that there is any public interest in disclosing this
    information before that time."



    Research study to investigate a chronic childhood condition
    Press release issued 3 March 2010:


    http://www.bris.ac.uk/news/2010/6866.html

    Suzy Chapman
     
  10. Tammie

    Tammie Senior Member

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    I'm too exhausted rt now to really explain, but I absolutely believe that what has happened is more than just ignorance and stupidity....and I think it's more than greed, too

    after reading Osler's Web & all that has happened in the US, esp with the CDC; learning about all that has happened in the UK, as well as the way that the NICE recommendations were so drastically changed; learning about the secret files; knowing that the UK has discouraged blood donations for many yrs (if this were mental illness or even if they were just ignorant about it, there would be no reason to stop people from giving blood); knowing how they treated the DeFrietas discovery in '91, etc, etc, etc

    ......and just the extreme animosity as well as the way they tried to get DeFrietas fired; the continued twisting and outright lying on many of the so-called research studies (& the attempts to discredit the valid ones and/or to entirely ignore all the evidence of physical abnormalities)....etc

    esp the way they refuse to accept the nearly 5,000 studies showing a biomedical nature - that does not show ignorance - they absolutely know about those studies - they are willfully ignoring and trying to disprove them

    after 25 yrs of this stuff, there is no way that anyone associated with ME/CFS can claim ignorance....and I don't think they are stupid either - it takes brains to be able to manipulate things so thoroughly and for so long and keep getting away with it

    and then of course there is the continued push for CBT and GEt even after much evidence that they not only do not work, but that they are seriously harmful - not only do they push these, but in the UK, they refuse to even allow other treatments or even other diagnostics to rule out other issues, and they sued two docs (in Belgium, I think) bc they wanted to actually treat the patients rather than push GET and CBT 0 then there is the stuff like taking a child away from his parents in the US (the child had CFS and they wanted to say the parents were the problem when they were trying to get the kid help), and then of course there is the case of Sofia Mirza and her death due to their treatment, and they still force others to be committed......this kind of deliberate harm to patients - to many, many patients despite an abundance of evidence against such treatment says that something is seriously wrong, too

    then there's the increasingly watered down definitions being used.....I have seen studies that only require one month of "feeling unwell" to qualify and then the "researchers" claim that they studied CFS.....have seen studies that did not exclude patients with cancer, MS, Parkinsons, depression, etc and they tried to claim that those were CFS patients, etc, etc - again, not ignorance, but deliberately skewed "studies" that were then widely publicized....heck even given a little basic info even a 5th grader could tell you that the recent CDC's XMRV "replication studies" were not done in such a way as to qualify as replication at all

    like I said, I am not sure if I can explain well rt now, but when you put all this stuff together and more, explanations of ignorance, stupidity, greed, egos, etc just don't hold water
     

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