on CDC chatter blog

Discussion in 'Fibromyalgia Main Forum' started by Bluebottle, Nov 3, 2009.

  1. Bluebottle

    Bluebottle New Member


    comments on xmrv in the blog include:

    "The difference between AIDS and Hepatitis C and CFS (besides being incurable) is that doctors around the country KNOW how to treat AIDS and Hepatitis C. And if you've got the first two diseases, you don't have to convince an ignorant primary care physician that you're really sick. Persons with CFS have a difficult time finding practitioners who have any clue about managing this complex neuroimmune condition. So yes, in the absence of readily available medical care, some CFS or chronic neuroimmune disease centers are in order - for those who aren't lucky enough to live near a Dr. Peterson or a Dr. Klimas."

    "We can't replicate the XMRV study because our samples aren't from patients meeting the 1994 Fukada definition or the 2003 Canadian consensus definition. And in 2003 when we had all the tests done we didn't test for any of the well known immunological problems or viral loads so we can't even subgroup."

    "Let's be honest here: The CDC/CFS groups does NOT want to replicate this viral study because it only makes Reeves, et al look even more pathetic. Get real. The data is out there and there is NO excuse for Reeves and his people anymore. NONE. A number of other research orgs are replicating and the WPI has the largest tissue bank going back to the Incline Village cluster. The above statement on XMRV just does not cut the mustard and the researchers and public know it. Knock it off. CDC/CFS/Reeves got caught big time and Dan Peterson will read the riot act in DC on the 29th of Oct. A good time will be had by all - except the CDC."
  2. misskoji

    misskoji Member

    I've been watching this site in awe for a week now. First I thought it had to be fake, but it includes comments and materials from all sorts of CDC subjects/goings on.

    It's too bad they removed the content now. :( but I'm glad others were quick enough to grab screenshots.

    This quote has my jaw hanging low.

    Score: 1, Interesting)

    by Anonymous on Oct 15, 2009 - 03:19 PM This particular type of virus is far less complex than the AIDS virus so they do believe that anti-virals can be cooked up quickly to clear it out and kill it off.

    We know it does cause certain cancers and this has been known for more than just the last three years. In fact, this "virus" has been known at the CDC since about 1991 and yet the CFS shop did nothing with the data or research. So yes, we do know the advocates are going to be enraged with the CDC and with Bill Reeves in articular with this study and the data now just coming out that this virus was first discovered in 1991. Heads will fall after this study reaches more of the CFS advocates. Reeves and his people better get their resumes together and get out of Dodge quick! THEY, the advocates, are calling for Reeves head and Congress is involved, my understanding from a few folks up there. Not good. We don't need Congress on our backs again and this is going to do it.

    Reeves: you really mucked it up for the rest of us. I need my job.
    [This Message was Edited on 11/04/2009]
  3. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    This is interesting. I am very curious as to what Mrs. Whittemore and Dr. Mikovitz is telling government people in Washington this week. ;-).

    But to be fair, Reeves was only following the lead of the people before him. And once you have a prejudice, it is hard to change it. Since the Incline Village outbreak, though, an attitude was established at the CDC. With every new doctor coming in, they are taught the same attitude. And so it is like racism, passed to successive generations.

    An investigation needs to go back to the early 1980s to see where the failure was.

  4. jasminetee

    jasminetee Member

    I hear what you're saying Tina but I don't quite understand how it is that the workers at the CDC didn't "inherit" this prejudice as well. I thought they were all against us at the CDC -- every last one of them -- until I read that Chatterblog. I did read that one of the workers has a son with CFS and luckily he believes this is a physically devastating disease. We all know, just because they're family that doesn't mean they believe it is.

    From now on, I'm going to try not to say "the CDC" is our enemy. Clearly we have allies there. :) Thank goodness! There is one man that is in charge who we can blame and that's Reeves.

    There's certainly a lot of optimism coming from some of the workers in regards to treatment. Oh, do we dare to hope?


    [This Message was Edited on 11/04/2009]
  5. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Maybe I wasn't clear. My point was the Reeves et al did inherit the prejudice. When they came on, no doubt they were "briefed" which makes for a lot of opportunity to be influenced by the lack of results the CDC had seen in looking for an epidemic.

  6. mbofov

    mbofov Active Member

    I have just started reading this = it is mindblowing. Hilary Johnson did all the research. It's been out there for years. It is so worth reading, I am learning so much, not only about the ineptidue and closed minds at the CDC and NIH, but all about the tests and MRIs which have showed abnormalities from the get go.

    It seems to be a matter of egos and just plain closed-mindedness - I don't know - do they teach that in medical school? That if you have a medical mystery, the patient must be crazy? Unless someone somehow does enough research, and then you say you knew it all along. But even with all the reserach and lab results and MRIs etc. etc. etc., the powers that be still dismissed all the evidence. I don't get it.

  7. jasminetee

    jasminetee Member

    Tina-- I do agree with you. However, I also hold Reeves responsible for his own choices and actions and inactions. But I think you are right about how the prejudice against CFS patients has been passed along and I think your analogy of abusive families is right on.

    Mary, isn't Osler's Web amazing? Tina's reading it right now too. I read it years ago. I needed to look up every 10 words, lol, but it was completely worth it.

    Isn't it maddening that there were abnormalities on tests and MRIs from the beginning and yet the CDC investigated and determined that this was some kind of YUPPIE flu? And then from there CFS became "psychological". At least in the beginning they were saying it was some kind of flu.

    I do think they teach this kind of mindset in med schools. I've read countless stories now of people going to the ER with broken bones being told that their pain is all in their heads and being sent home with no treatment. The same thing happens to some people who go to their doctors with cancers and other injuries and illnesses.

    When I hear these stories I do realize that at least it isn't just us being mistreated and belittled by the medical professionals.

    [This Message was Edited on 11/04/2009]
  8. mbofov

    mbofov Active Member

    I bought this book several years ago, started reading and stopped. I didn't get it then for some reason. I don't know if I was too tired, or what, but I couldn't get into it. I just picked it up again 2 days ago, and cannot stop reading. It is mindblowing, no other word for it.

    What scares me is that they have had all this clinical SBM evidence (and evidence of the retrovirus!) for over 20 years and done nothing. I see nothing to stop them (the CDC, NIH, medical powers that be) from doing nothing for the next 20.

    You're right, it's not just us - many other diseases have met the same ridicule and hostility in the beginning. What a mindset, though - it's a wonder that SBM ever gets to the bottom of anything!

  9. jasminetee

    jasminetee Member

    Take heart Mary. The NIH and the CDC will either step it up now or get left behind thanks to the WPI. :)

    Write more about your thoughts as you read OW if you like. I like hearing your thoughts and discussing it.
  10. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    I see a few things in Osler's Web.

    First, the only objective abnormality when the two CDC epidemiologists came to Incline Village was Epstein Barr antibodies elevated. But, the illness didn't match an Epstein Barr infection. And they didn't know a whole lot about Epstein Barr then. So they couldn't attribute it to the Epstein Barr virus.

    Second, Hillary points out that the art and science of drawing logical conclusions from clinical exams had been replaced by relying on lab results. If it couldn't be seen in a microscope, then it didn't exist since the reliability of patients can't be trusted. Psychological illnesses do exist. So, without an abnormality in the lab, since schools had been teaching docs to rely on lab results, then it must be psychological.

    Third, most of them were women. And women have little credibility with men. In fact, women have less credibility with women, studies show.

    Fourth, it was only after the two docs from CDC had left Incline Village, with their own determined "patient" and "control" samples, did the MRI abnormalities, immune system abnormalities and neurological test abnormalities become known. Peterson or Cheney (forgot which one) said they could understand the two doctors dismissing it as psychological based on the initial evidence, but the subsequent evidence he sent to them afterward, he can't find any excuse for.

    Yet, by that time, the conclusion had been drawn, it had been engraved into the attitudes. And with many scientists, they dismiss any evidence that doesn't fit the predetermined conclusion. I have seen this in other disciplines.

    Through in ego, the fact it was an affluent tourist town with a bunch of people with a lot of time on their hands, and you had a mix that led to a natural conclusion.

    I think if it was mostly men that were sick, things would have been different. If the MRI and neurological test abnormalities had been available in the front end, things might have been different. If it had been in higher numbers and affected more people in the same family, things might have been different. If people were dying from it within a year, then things would have been different.

    Let's face it folks, stacked against us was human nature and mother nature (I mean the nature of the disease itself.)

    But, as was said, don't have to worry now. Either CDC and NIH will get their act together or they will be left behind.

    Just think of the doctors who have told these people that they have a psychological illness. I wonder, when all of this is well known, what they will think. Will their conscience bother them?

    Tonight, I spoke with a woman whose daughter had a brain tumor. It is a horrible story. She also has CFS. In the midst of this, her husband leaves her. Of course, he told people her illness was psychological. While living in my area, she had a doctor who said he knew it wasn't psychological. But she ended up having her house foreclosed. So she is living with her parents in Orlando.

    She went to a couple of doctors there who told her she has depression. She began to think maybe they were right. She entered a clinical research study for depression. And guess what they determined after months of drug experiments on her? They called her into the office Thursday of last week to say, "We can't diagnose you with something else because our specialty is depression. But we have determined you don't have depression. Please give us all the medicine back.

    They said they are hoping to have another research grant that she might be a good candidate for. (Could it be they have changed their minds from the XMRV study results?)

    But this is an awful story.

    An investigation needs to be done.


  11. jasminetee

    jasminetee Member

    That is a very tragic story. What a shame for that mother and daughter to have to go through so much suffering and misery. It's good that the Depression Study figured out that she is physically ill and not depressed.

    I completely agree with what you said about the beginnings of CFS. Lots of Ifs there. If only.....