New era for ME/CFS research as top cytokine study attracts media headlines
The immune systems of patients who have recently developed ME/CFS look markedly different from those who have been ill for much longer, according to a major new study from Drs. Ian Lipkin and Mady Hornig at Columbia University. This shift in immune function hadn’t been seen before.
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CDC's History with ME/CFS - 1996 PrimeTime Report

Discussion in 'General ME/CFS News' started by ixchelkali, Jul 10, 2010.

  1. ixchelkali

    ixchelkali Senior Member

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    I came across a great video of a 1996 ABC PrimeTime Live report on the background of the Chronic Fatigue Syndrome epidemic and the CDC's actions (or lack thereof). It came out just after Osler's Web was published and has interviews with Hillary Johnson, Paul Chaney, Elaine DeFreitas, David Bell and patients. Some of you may already have seen it, but I hadn't. If you haven't, I recommend watching it. Good historical perspective.

    http://vimeo.com/13048135

    Rated :thumbsup::thumbsup: (2 thurmbs up)
     
  2. jewel

    jewel Senior Member

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    Incredible how little has changed... thanks for posting. J.
     
  3. ixchelkali

    ixchelkali Senior Member

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    Figured out how to embed it...

    [video=vimeo;13048135]http://vimeo.com/13048135[/video]
     
  4. zoe.a.m.

    zoe.a.m. Senior Member

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    ixchelkali,
    Thank you for finding and posting this. What a thing to have this document. What blew my mind was that, if this exact piece (w/updated clothes and hair of course) were to show up on the news tomorrow, it would still seem like a huge leap toward progress and validation--even if not one word were changed.

    Nice to see "Dr" Bill Reeves had his head firmly wedged up his ass that long ago and wasn't afraid to go on record calling an entire town "hysterical" (on television, which is very different from a memo or meeting notes--I'm pretty sure tv was the internet around 86). Wish that "hysterical" group had the energy to put a bag of dog crap in front of his door every night for the rest of his days.

    Color me shocked to hear that MRI abnormalities were showing up that long ago--you wouldn't know it by today's practitioners.

    What a travesty. I didn't think I could really get more upset--though it goes day to day--but this is ridiculous. Where has the press been since then? Kudos to that reporter for sitting there and asking that guy point blank about Reeves' comments. If I ever thought I understood the level of harm he had done and how innappropriate his post was, I never imagined truly that anyone could be that bad at their job and remain and remain and remain. I believe there are people who have been prosecuted for war crimes who have harmed fewer people and in less despicable ways.

    I don't mean to take away from Osler's Web, there is something different about seeing it on what could have been last night's national evening news...
     
  5. Forbin

    Forbin Forbin

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    Interesting to see young Stephen E. Straus on the August 10th 1987 edition of Nightline (at 7:13 in the video).

    This was just three years after the start of the Incline Village outbreak. Straus was just 40 years old at the time and would, by several accounts, go on to become a major obstruction in the path of CFS research.
     
  6. anne_likes_red

    anne_likes_red Senior Member

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    Excellent find. Thanks for posting ixchelkali.

    "From my own research I know this disorder is so subjective ahhh that patients will commonly feel better - no matter what you give them."

    *Shudder*.
     
  7. Dainty

    Dainty Senior Member

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    Thank you for finding and posting this! Spreading it around...

    Ooooh.....then with the treatments we've tried we should all be cured 100 times over by now! :tongue:
     
  8. Jerry S

    Jerry S Senior Member

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    A big thank you, ixchelkali! I had no idea this 1996 Prime Time Report existed. I thought they did a good job of covering the story. It's a useful piece of evidence. Why can't we get coverage like this today?

    Maybe we will.
     
  9. muffin

    muffin Senior Member

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    USA!
    Rage and Fury at the CDC

    Just saw this video and I am again in a state of rage. This Primetime story was about 15 years ago and nothing has changed. Nothing. http://vimeo.com/13048135

    I know many think that Reeves, Strauss, and the others at the CDC are beyond stupid - but come on, let’s be real about this situation. All it takes is simply LOOKING at a very sick CFIDS person to know that they are indeed as sick as they say they are. If the CDC people actually listened to a few patients that would be the final kicker. So either Reeves and others never saw a single CFIDS sick person or there really is a conspiracy going on at the CDC (with another government(s) organization(s)) because that many people can not be that damn stupid. Stupid all the way up and down and across an organization?

    Again, I was never one for conspiracy theories except for that which went on in governments like the Soviet Union and other communist countries (I was an East European/Soviet Studies major in college). I did not think it possible for the US government to be able to hide something so huge and deadly as CFIDS or Gulf War Syndrome. But look at the three decade’s worth of evidence. The millions of sick, those that have died or killed themselves to escape the hell they lived in, the 5,000 plus solid medical studies, the overwhelmed doctors in the trenches trying to deal with the sick and all of their symptoms. And quite truthfully I figured that those in the government would be 1) too stupid to keep something this big under wraps, 2) someone with ethics would open their mouth(s) and blow the whistle, 3) government oversight would have/should have caught on to something this big, and 4) those involved had to have learned lessons from other unethical medical experiments like The Tuskegee syphilis experiment that actually did go on unabated for 40 years before one person stepped forward and finally opened their mouth. I guess the Tuskegee experiment of 40 years with many involved should have been a tip off that our government was and still is capable of committing horrific crimes against its own population.

    I am still firmly in the camp that the CFIDS and Gulf War Syndrome are part of some sort of biological warfare or other experiment gone wrong and out into the population either accidently or deliberately. I do believe that both the US and UK governments are involved given the Reeves-Weasel connection is so strong and long standing. I don't believe the 30 year dismissal of CFIDS is just plain stupidity of those involved. I can't believe it given all the evidence to the contrary. There has been some sort of serious government cover-up and the CDC has been the front man for this cover-up. Why so many other Federal government organizations ignoring this issue or supporting the CDC? Are all those people stupid too?

    I supported the Federal government as a contractor for many years and did see some really stupid people making really stupid decisions. My husband spent his 35 year career as a senior Federal government employee and saw a fair amount of stupidity. But, he and I both can not help but believe that something is so rotten, so unethical that it had to be covered-up and kept covered so that the US public and the rest of the world's population would NOT find out all that had/is going on behind the scenes.

    I read Mindy Kitei's (www.cfscentral.com) amazing post "COWARDLY ACTS and EVERYDAY REBELLIONS" but still believe that this was an orchestrated cover-up and not just a Kuhn-like postulate that genius will be fought against, ignored, demeaned because of the old guard and their entrenched beliefs. This theory fits well with many, many other examples in the medical and scientific worlds (most actually), but not with CFIDS or XMRV/Retrovirus research and findings. Stupidity and stubbornness can not explain the 30 years that the CFIDS sick have lived through. There can not be that many stupid and stubborn researchers, scientists, and physicians who do the research, read the research and treat the millions of very sick. I just can't swallow that one.

    Call me a nut job conspiracy type, but I do believe that when finally this whole sordid episode is exposed we will see that the US and UK governments have been terribly involved in burying this disease and the virus(es) that may be responsible for them. Given my own DoD involvement and what the retired military guys would tell me quietly, I have no choice but to believe the US/UK governments are the creators of these viruses and the unethical garbage at the CDC are part and parcel of this cover-up.

    Go ahead and shoot at my theory, I would have 20 years ago, but everything points in this direction. Oh and let's not forget that 40 page document sitting in the UK Archives with a 73 year lockdown. What is so secret that a document is locked down until 2071?

    This video just blows my mind. It has sent me back even deeper into that rage that I have lived with for 16 years along with the pain, loss of IQ/memory, sleep disorders, total lack of body energy, and all the other fun symptoms that have destroyed my life. I know you all understand this part.

    It is time that we fight to bring those involved in the CFIDS/ME cover-up to justice. If I am wrong and there was no concerted cover-up, they all still need to be punished for extreme negligence and dereliction of duty. If it is egos and careers that were involved and not conspiracy, then we must still demand that the likes of Strauss and Reeves, White, Weasel and all others involved be brought before the public, shamed, and imprisoned. This won’t bring back the young ones who suffered and died from this disease or by their own hands, but it may send a strong signal to others that this sort of behavior will not be tolerated. I would have thought the Tuskegee Syphilis experiment was enough of a lesson (40 years!!!), but apparently not. Time for life-long prison sentences to vindicate our dead and sick, as well as “educate” those that follow after these criminals in the years ahead. It’s just a shame that Reeves, Strauss, Weasel, White and the rest are so old that their natural life spans allow for only a few years of prison time until their deaths.
     
  10. muffin

    muffin Senior Member

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    USA!
    Must see primetmie/nightline story w/ hillary johnson/defreitas/strauss -15yrs ago

    http://vimeo.com/13048135

    NOTHING HAS CHANGED SINCE THIS STORY WAS DONE 15 OR SO YEARS AGO. YOU WILL BE ENRAGED.

    GREAT CATCH BY OUR SMART PEOPLE! THANKS FOR THIS ONE!
     
  11. LaurelB

    LaurelB Senior Member

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    I wonder if Primetime/ABC would be interested in revisiting this topic again, especially in light of the recent news. I checked their website but could not find a contact option.
     
  12. Hope123

    Hope123 Senior Member

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  13. LaurelB

    LaurelB Senior Member

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    Thanks, Hope! I did go to the contact page and sent off a brief blurb, and got this in reply:

    "Thank you for your request to ABC News.

    To submit a story idea to one of the ABC News shows listed below, write a single page letter including your name, phone number, and address. Include photocopies of backup information. On the outside of the envelope, write "Story Idea." If a producer is interested in your story, he/she will contact you. Here are the show addresses:

    20/20
    147 Columbus Avenue
    New York, NY 10023

    Primetime
    147 Columbus Avenue
    New York, NY 10023

    Nightline/This Week
    1717 DeSales Street NW
    Washington, DC 20036

    ABC World News with Diane Sawyer
    47 West 66th Street 2nd Floor
    New York, NY 10023

    Good Morning America
    147 Columbus Avenue
    New York, NY 10023"

    Unfortunately, I'm too sick to do a formal cover letter and don't have a printer to do so anyway. But perhaps others would be interested in writing in.
     
  14. Forbin

    Forbin Forbin

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    I just wanted to clarify that although this PrimeTime Live segment is from 1996, the Straus interview it contains is from a Nightline from the summer of 1987. (Hmmm. Couldn't get Straus to go on the air in 1996?)

    I have that whole Nightline on audio tape and could upload it to youtube if it would be of interest to anyone. From a historical standpoint, it might be the first network coverage of what was then called Chronic Mononucleosis Syndrome.
     
  15. anne_likes_red

    anne_likes_red Senior Member

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    I think Nancy Snyderman reports (on health topics) for Dateline NBC. Perhaps she would be interested? She certainly seemed interested back then. :)

    PS Muffin, I empathise with that rage.
    The thing about this piece is that it sums up the situation so "nicely". Icing on this tragic cake - 14 years of continuing negligence.
     
  16. George

    George waitin' fer rabbits

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    Dr. Reeves dad was a big wig at the CDC, lifetime career and he did some really good work there. (read more) It has always amazed me that the son was such an idiot! His dad did major work on the West Nile Virus research and implementation to stop it's spread and the best his son can do is decide that sexual abuse makes people tired? Weird!
     
  17. Doogle

    Doogle Senior Member

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    Full Transcript at http://www.me-cvs.nl/index.php?pageid=3474&printlink=true&highlight=scriptie

    Prophetic and pathetic.

    Starting at timestamp 11:00:
    NS: The government finally did put someone forward to talk to us--Dr.
    Philip Lee, Assistant Secretary of Health. [Snyderman interviewing Lee]:
    Do you believe in clusters?

    PL: Do we have clusters of cases? Oh yes, I do.

    NS: Dr. Reeves told the producer for this piece that in fact the Lake Tahoe
    "cluster" didn't exist and the people living there are hysterical.


    PL: Well again, that's his view.

    NS: But he's a scientist at the CDC; he's responsible for investigating
    these kinds of things!

    PL: The CDC did investigate that. They reached certain conclusions, which
    many people disagree with.

    NS: Do you believe it's a virus?

    PL: I really don't know, I mean..

    NS: If you had to take..

    PL: Well I would guess..

    NS: an academic hunch..

    PL: Well I would say it would be a retrovirus or a virus, I would think so.

    NS: Lee says the government is making progress. But Hillary Johnson, whose
    book is being released today, remains unconvinced.

    HJ: I think it's one of the most incredible medical stories of our century
    and it's going to be very, very hard for the government to change its
    position on this disease. I mean to have to sort of call up the American
    public and say, hey, you know that disease that we've been calling chronic
    fatigue syndrome for the last ten years, well guess what, it's really
    something far more serious and it's transmissible and we made a mistake in
    Tahoe and we've been making a mistake ever since.
     
  18. muffin

    muffin Senior Member

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    George

    I believe it was Hillary Johnson who did some sort of quick psycho-analysis on Reeves and his attempting to follow in his father's rather large footsteps. I think shrinks could have a real field day with him and all that makes him tick. The same goes for Weasel in the UK and his behavior given that his family escaped the Nazis, went to the UK and changed their name from something like Weasel (however it was spelled) to a more Anglo Wessely. Now this sociopath would take months of heavy analysis by government psychiatrists to really delve deep into that personality disordered man. That personality is something truly deranged and I have great sympathy for our UK friends given that this sociopath is the one leading their ME program.

    Again, it is these type of people who are most capable of inflicting harm on others (millions in this case) without the least regard. I do believe that both these sociopaths and the other followers are true sociopaths, devoid of any human empathy, sympathy, concern for others. Nor do either sociopath have any feelings of guilt or remorse for their actions, mistakes, etc. IF they had guilt or remorse, they would have made big changes FAST when so much evidence was presented to them that contradicted their views. Instead, they held fast to their evil program and continue to regardless of the countless millions of dead and sick in the US and world.

    Wait until the truth comes out. Though I fear that Reeves, Weasel, White, et al will die from old age, cancer or heart disease before they get their just rewards. And I do NOT mean some medal of honor, but public shame and prison.

    I know that when I have messed up pretty good, I have quickly come clean and knocked myself out to fix and undo the damage. Most decent people act like this. All decent people would quickly fix a deadly situation even if they had to take the slings and arrows and a hit at their career. A career is not worth the lives of millions of people, is it? Only someone so truly sick and evil would play this game for almost 30 years regardless of the horrendous affects on other humans.

    I hope that the CDC PR/Marketing people are reading all that we write about the CDC and their staff. They must know that the credibility of the CDC is in huge trouble and this issue is going to really damage what's left of the CDC's credibility -- oh and funding levels too.

    So very, very mad. Just looking at that little girl on the Nightline video makes me so angry I could explode. How could anyone allow children to be hurt like this for 30 years? How? The CDC never dealt with children in any of their studies and they were required to do so. They knew that if children and young people were involved and not the neurotic, middle-age, menopausal women that they portray as having CFS, the children alone would blow the cover off this scandal. The public doesn't like to see children damaged -- it enrages them. I think it is time to concentrate on those sick children and ensure that the public here in the US and abroad SEE for themselves what happens to these poor, little sick kids. High time. ((More on this idea of showing the sick children later))

    A pox on those involved in this CDC scandal/cover-up as well as anyone else involved who has persuaded themselves that what they have done is in the best interests of the country or its national security. To the lock-step followers of Reeves, Weasel, and all others involved: you too were involved and have much the same guilt as the main sociopaths. Go deal with your guilt. Opening your mouths finally and telling the truth would be a first good step. Far better than a Catholic confession.
     
  19. muffin

    muffin Senior Member

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    ===>>>This explains why I read Primetime but heard Nightline.
    You might upload what you have so that others can see/hear what was said all those years ago. We want everyone everywhere to have access to these interviews. It only damages them all further. So, 1987 and 1996? And here we sit in 2010 and nothing but the aging of their faces has changed. Nothing.
    We know our government can be quite slow to react but this is beyond anything else we have seen. Hillary Johnson's statements (of course) nailed it and then looked into the future and read the tea leaves.
     
  20. ixchelkali

    ixchelkali Senior Member

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    Doogle, thanks for that link. It's always helpful to me to be able to read a transcript. Interesting to find it on a Dutch ME website, too.
     

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