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Hillary Johnson on CDC's Reeves & XMRV findings

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by mezombie, Oct 25, 2009.

  1. mezombie

    mezombie Senior Member

    East Coast city, USA
  2. _Kim_

    _Kim_ Guest

    This one by Hillary is full of spit and vinegar! Whatever she had to tame to get the NY op ed piece out, she unleashed in full with this blog entry.

    Aside from all the Bill-bashing, I was struck by this quote:
    "A prominent scientist in the field notes: There have been enough tilt tables and enough questionnaires. Why fight a battle with shrinks when theres a deficit in the B-cell?"
  3. Aftermath

    Aftermath Guest

    Reeves and the CAA

    I have long given the CAA the benefit of the doubt.

    Still, after the asinine comments that Dr. Reeves made following the publication of the Science article, it's very clear that he has to go.

    I am curious as to if the CAA has called for his ouster? If not, I doubt I will be supporting this organization until they do so.
  4. Kati

    Kati Patient in training

    I love her writing, can't get enough, she has something to say, she says it, and directly. Way to go Hillary!

    The fact that perhaps Reeves went fishing during virology 101 is "hilarious" :D no pun intended :D

    The guy's got to go. The guy's got to be prosecuted, and imprisonned, and CDC has to pay for all these lives lost through sickness, job losses and poverty. Did I mention time loss?

    For those that will be in Washington DC next week, don't let the man say a word- make yourselves heard, ask for him to be fired. Ask for the right to adequate health care for all of us and all of you american. Ask for the right to adequate treatment and compensation for years lost. We all deserve respect, and respect starts now.

    As for CAA, it's very interesting to hear comments from Hillary- since I am new with the disease I don't have much experience with them, but on FB I seem to be banned to make comments now- and ask question- the last question I asked was is CFS contagious, and I was told NOOOOO- :eek: that was a week before the big news came out. So now I know where not to go for answers. Perhaps they were bound by silence. Apparently they didn't do a good job at it- they almost caused Science Journal to refuse the article since they were about to leak information- forcing them to put it to press a week earlier. That's bad- and then you say you are advocating for us?????

    Again, thank you Hillary for giving us a voice.
  5. anne

    anne Guest

    I used to be confused by Johnson's rhetoric toward the CAA. But I have to say their response to the WPI has been disturbing to me. The questions they raise about the study don't seem to make sense--the WPI says they don't need age and gender stats when its a virus and frankly, I believe them. And it seems peculiar to call into question anything that's happened in Journal Science. They've seemed really tepid on this, and it's caused me to really question them.

    Kati, they seriously told you CFS wasn't contagious? I can tell you very certainly that, to some degree, it is.
  6. Aftermath

    Aftermath Guest

    CDC vs CAA

    Just to be clear, it was the CDC that made the idiotic comments about the WPI work and science, not the CAA.

    The CAA is accused of not securing confidential info about the paper prior to publication, but this has yet to be confirmed.
  7. anne

    anne Guest

    Oh, yes, I know--I read the Reeves comments and blanched. But Dr. Vernon echoed them on a note on their Facebook page.
  8. Aftermath

    Aftermath Guest


    I just saw this. My support for them is waning by the day.
  9. Kati

    Kati Patient in training

    Kim McLeary personnally e-mailed me on September 28 2009- and she refered me to a journal article that I have printed. I can send you a PDF of the article if you want, just send me an e-mail. I tried to look for it online but couldn't find it

    The CFIDS Chronicle. Spring 1996- OMG that was 13 years ago~~~~
    "Is CFIDS contagious Experts respond to this controversial issue. "

    Debra Bushwald, University of Washington, Seattle
    Dr Jay Goldstein, CFS Institute, Anaheim
    Dr Nancy Klimas- interestingly- She has changed her mind- Her explanation deserves reading too- she is saying that it would be making CFIDS patients a great disservice to say this is contagious- for the patients would be even more isolated and ostracized than they were then (1996)
    Dr Anthony Komaroff, Boston MA
    Dr Charles Lapp, Charlotte, NC
    Dr Bill Reeves- CDC- ya big surprise
    Dr Jonathan Rest, University of Calif, San Fran
    Dr Straus NIH, Bethesda
    Dr Jay Levy Univ. of Cali, San Francisco
    Of note each has their own reasons- and explanations-


    Though she was not formally interviewed, it was mentioned many times that Hillary Johnson was suggesting CFIDS was contagious.
    Dr Dan Peterson concurs with Hillary Johnson

    At the end of the article, i can read: "The following doctors were also asked to respond but were unable to do so: Dr David Bell, Paul Cheney and Peter Rowe."

    This is what I was given, in early October 2009.:confused: Now I can LOL. Phoning VIP DX for a kit test. :rolleyes:
  10. Roy S

    Roy S former DC ME/CFS lobbyist

    Illinois, USA
    In the blog comments Hillary writes that last year Kim McCleary's salary was $177,517.00. That's more than a United States Senator.
  11. Kati

    Kati Patient in training


    That's a hefty salary considering that not much seems to be achieved. I always compare their salary with what I make- or I use to make- is it fair?

    What I really want to know is how much Reeves makes a year.
  12. anne

    anne Guest

    That's very interesting, Kati. I wonder how they account for the cluster cases, then.

    I had CFS from 1991-6 (off and on) and again in 2003-5. My husband has it now. I met him in 1998. Those are some odds, unless it's contagious somehow. (Someone on the CFIDS Facebook page said she didn't know of anyone in a healthy faithful relationship who had given it to their partners. I don't think she realized she was casting aspersions on my marriage.

    When I was pregnant, Dr. Peterson warned me of the possibility of transmission. This was in 2006.
  13. PoetInSF

    PoetInSF Senior Member

    I only stumbled on this while googling for Jay Levy on CFS, a local retrovirus expert, but I may have a theory to offer.

    It is well known/suspected that some of cfs cases are post viral. So it is possible that those clusters were triggered by a virus, even though the virus is not the direct pathogen for CFS. Likewise, it may be possible to "transmit" CFS by passing the trigger virus.

    Is xmrv just another trigger virus? The only way to find out I think is through antiretroviral drug trial. And I'll bet that'll happen weather or not xmrv is confirmed for the general CFS population. The drug trial for much less significant hhv6 happened after all.
  14. No it's a deadly retrovirus. :(

    However I like the theory XMRV could lace 'standard' viruses we all catch with XMRV, and then pass it on by sneezing. (It's not been ruled out that XMRV is contagious, as well as infectious). It would make sense how you 'catch' ME CFS one day, with an apparent flu like disease - yet never recover.

    If there is any scientifc evidence for this theory though, I don't know.

    As XMRV is incurable, I would also imagine the claim only 25% of people with ME CFS are severely affected is rubbish, it'll be way higher as there are millions of reasons for people to have chronic fatigue, and the diagnostic criteria are so lax - that anyone can be diagnosed with ME CFS and not have it. No one could ever fully recover from XMRV induced ME CFS (XAND), they could only go into remission.
  15. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

    > No it's a deadly retrovirus.

    You must not know the human spumavirus. The HTLVs aren't pathogenic for most people either. Nor are HIVs/SIVs generally bad for the primates that get them. XMRV's probably the cause of CFS, but being retro doesn't contribute much to the response to that question, at least to my knowledge.
  16. muffin

    muffin Senior Member

    I have had CFIDS for 15 years; Husband has had it for 5 years

    So NO ONE can tell me this isn't contagious. No ONE! And no, neither of us cheated during our marriage of 23 years. And NO! Neither of us was "foot loose" when we were young and dating. My poor husband got sick because of ME and living with me for 12 years and sharing food, utensils, etc.

    I have made it a point to stay away from my niece and nephew and NOT kiss them on their faces or let them near my mouth or toothbrush, food, drinks, etc. If I figured out 15 years ago that I could probably give this to someone, esp. someone related genetically to me, then why would transmission through saliva, air, etc. not be possible? I do believe that CFIDS is contagious but that most of us are too sick to leave the house and spread our lovely germs around. I know I leave the houes maybe three times a week and sometimes not even once a week and this has been standard for 15 years. So, how many people could I have made sick if i never leave the house? BUT, I did make my poor husband sick and for this I will feel forever guilty, regardless of the fact that I did nothing wrong to get CFIDS.
  17. bakercape

    bakercape Senior Member

    Cape Cod. Mass
    I have to agree

    with what Muffin says about contagiousness. My mom, Brother, Sister and I all got CFS at around a 3 month time frame. We had positive epstein barre tests and Chicken Pox. It seems that if XMRV is the cause of this horrible illness that it is a plausable idea that it rides ebv or another virus into our system.

    I also believe it has to be possible to have XMRV and not be ill.
  18. dipic

    dipic Senior Member

    I would have to think that as well because I also know a bunch of people who have had CFIDS for many years yet their significant others do not.
  19. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

    Thats a lower bound, as I see it. A figure 4x higher than that wouldnt shock me. Jason found ~0.45% prevalence for CFS. He found about the same for the entity "Chronic Fatigue", comprising fatigued subjects who fail to meet a fairly typical, somewhat stingent survellence definition of CFS. So this might take you up to 0.9%. There might also be FMS subjects who satisfy neither FM or CFS, but they are probably very few. And some CF subjects surely have yet-undiagnosed lupus, MS, etc -- but probably not many.

    Also, the 95% confidence interval on Jason's work is so and so. The CFS prevalence is not simply "0.45" or "0.42" or whatever it was he found. There is possible error because the sample size is very small compared to the population of the USA. If you accept 0.9 above, then there might be a 95% that the true prevalence of (CFS + CF) is between maybe 0.5 and 1.3%. And there would be a 5% chance that the true prevalence would be outside that range. 1.3% of the USA would of course be about 4 million people, so the percent of XMRV+ subjects who have CFS in a broad sense could be as high as ~35%. I think 6-20% is likely.

    Of course, there was another population-based study (the gold standard method) besides Jason's. It found something more like 0.25%. I am factoring this into my 6-20% estimate (though it is not a serious estimate, it is very careless). The two studies by no means are necessarily inconsitent. Their 95% condfidence intervals for CFS prevelance probably both include the value 0.3%.
  20. Marylib

    Marylib Senior Member

    New Zealand
    Dr Lapp

    Lapp -- a "fencesitter" who seems to promote GET (graded exercise) a lot.

    I heard a CD of a talk Dr Lapp gave in NZ, and he was promoting pacing, not GET. It was a pretty good talk on pacing, in my opinion. It has helped me a great deal in conceptualizing pacing.

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