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A Case for Chronic Denial by Hillary Johnson

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Summer, Oct 21, 2009.

  1. Summer

    Summer Senior Member

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    Op-Ed Contributor NY Times
    A Case of Chronic Denial
    By HILLARY JOHNSON

    EARLIER this month, a study published in the journal Science answered a question that medical scientists had been asking since 2006, when they learned of a novel virus found in prostate tumors called xenotropic murine leukemia virus-related virus, or XMRV: Was it a human infection?

    XMRV is a gammaretrovirus, one of a family of viruses long-studied in animals but not known to infect people. In animals, these retroviruses can cause horrendous neurological problems, immune deficiency, lymphoma and leukemia. The new study provided overwhelming evidence that XMRV is a human gammaretrovirus the third human retrovirus (after H.I.V. and human lymphotropic viruses, which cause leukemia and lymphoma). Infection is permanent and, yes, it can spread from person to person (though it is not yet known how the virus is transmitted).

    That would have been news enough, but there was more. XMRV had been discovered in people suffering from chronic fatigue syndrome, a malady whose very existence has been a subject of debate for 25 years. For sufferers of this disease, the news has offered enormous hope. Being seriously ill for years, even decades, is nightmarish enough, but patients are also the targets of ridicule and hostility that stem from the perception that it is all in their heads. In the study, 67 percent of the 101 patients with the disease were found to have XMRV in their cells. If further study finds that XMRV actually causes their condition, it may open the door to useful treatments. At least, it will be time to jettison the stigmatizing name chronic fatigue syndrome.

    The illness became famous after an outbreak in 1984 around Lake Tahoe, in Nevada. Several hundred patients developed flu-like symptoms like fever, sore throat and headaches that led to neurological problems, including severe memory loss and inability to understand conversation. Most of them were infected with several viruses at once, including cytomegalovirus, Epstein-Barr and human herpesvirus 6. Their doctors were stumped. The Centers for Disease Control and Prevention, the nations presumed bulwark against emerging infectious diseases, dismissed the epidemic and said the Tahoe doctors had worked themselves into a frenzy. The sufferers, a C.D.C. investigator told me at the time, were not normal Americans.

    When, by 1987, the supposed hysteria failed to evaporate and indeed continued erupting in other parts the country, the health agency orchestrated a jocular referendum by mail among a handful of academics to come up with a name for it. The group settled on chronic fatigue syndrome the use of syndrome rather than disease suggested a psychiatric rather than physical origin and would thus discourage public panic and prevent insurers from having to make chronic disbursements, as one of the academics joked.

    An 11th-hour plea by a nascent patient organization to call the disease by the scientific name used in Britain, myalgic encephalomyelitis, was rejected by the C.D.C. as overly complicated and too confusing for many nonmedical persons.

    Had the agency done nothing in response to this epidemic, patients would now be better off. The name functioned as a kind of social punishment. Patients were branded malingerers by families, friends, journalists and insurance companies, and were denied medical care. (Its no coincidence that suicide is among the three leading causes of death among sufferers.) Soon the malady came to be widely considered a personality disorder or something that sufferers brought upon themselves. A recent study financed by the C.D.C. suggested that childhood trauma or sexual abuse, combined with a genetic inability to handle stress, is a key risk factor for chronic fatigue syndrome.

    Many people dont realize how severe this illness can be. It is marked by memory and cognition problems, and physical collapse after any mental or physical exertion. The various co-infections that occur only make matters worse. Many patients are bedridden. And recovery is rare. A significant number of patients have been ill for more than two decades.

    Dr. Nancy Klimas, an immunologist at the University of Miami School of Medicine who treats AIDS and chronic fatigue syndrome, remarked in The Times last week that if given the choice she would prefer to have AIDS: My H.I.V. patients for the most part are hale and hearty, she said, noting that billions of dollars have been spent on AIDS research. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.

    Congress has appropriated money for research on chronic fatigue syndrome, too, though in far smaller amounts, but the C.D.C. has seemed unwilling to spend it productively. A decade ago, investigations by the inspector general for the Department of Health and Human Services and what was then called the General Accounting Office revealed that for years government scientists had been funneling millions meant for research on this disease into other pet projects.

    As public health officials focused on psychiatric explanations, the virus apparently spread widely. In the new study, active XMRV infections were found in 3.7 percent of the healthy controls tested. Roughly the same degree of infection in healthy people has been found in the prostate research. If this is representative of the United States as a whole, then as many as 10 million Americans may carry the retrovirus.

    It is estimated that more than a million Americans are seriously ill with the disease. (Not everyone infected with XMRV will necessarily get chronic fatigue syndrome in the same way that not all of the 1.1 million Americans infected with H.I.V. will get AIDS.)

    Hints that a retroviral infection might play a role in chronic fatigue syndrome have been present from the beginning. In 1991, Dr. Elaine DeFreitas, a virologist at the Wistar Institute in Philadelphia, found retroviral DNA in 80 percent of 30 chronic fatigue patients. The C.D.C. went so far as to try to replicate her effort, but refused to follow her exacting methods for finding the virus. In addition, the centers blood samples became contaminated, and some people at the agency said that administrators ended the research prematurely. Rather than admit any such failure, the C.D.C. publicly criticized Dr. DeFreitass findings.

    That episode had a chilling effect on other researchers in the field, and the search for the cause was largely abandoned for 20 years.

    Now, Judy Mikovits, the retrovirus expert at the Whittemore Peterson Institute, in Reno, Nev., who led the recent study, has revisited the cold case. Not surprisingly, the institute is private, created by the parents of a woman who suffers from chronic fatigue syndrome. But Dr. Mikovits collaborated with scientists at the National Cancer Institute and the Cleveland Clinic.

    When she began her work on this disease in 2006, Dr. Mikovits, a 22-year veteran of the National Cancer Institute, knew little about chronic fatigue syndrome. But she was intrigued that an unusually high number of patients being followed by a Nevada doctor were suffering rare lymphomas and leukemias; at least one had died. And she was also impressed that the doctor, Dan Peterson, had built an extraordinary repository of more than 8,000 chronic fatigue syndrome tissue samples going back as far as 1984.

    My hypothesis was, This is a retrovirus, and I was going to use that repository to find it, Dr. Mikovits told me.

    What she found was live, or replicating, XMRV in both frozen and fresh blood and plasma, as well as saliva. She has found the virus in samples going back to 1984 and in nearly all the patients who developed cancer. She expects the positivity rate will be close to 100 percent in the disease.

    Its amazing to me that anyone could look at these patients and not see that this is an infectious disease that has ruined lives, Dr. Mikovits said. She has also given the disease a properly scientific new name: X-associated neuroimmune disease.

    For patients who have been abandoned to quackish theories and harsh ideologies about their illness for 25 years, the dismantling of chronic fatigue syndrome cant come soon enough.

    Hillary Johnson is the author of Oslers Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic.
  2. Kati

    Kati Patient in training

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    Woo hoo!!!! The news is spreading, people are talking, hopefully the family doctors, and non-believers specialists will read, listen, be interested.

    LEt's get the news VIRAL- pun intended.
  3. cfs since 1998

    cfs since 1998 *****

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    It is so great to see Hillary Johnson got an editorial published in NYT. She's such a great writer and loves to dish out firey criticisms of the CDC.
  4. dannybex

    dannybex Senior Member

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    Curiouser and curiouser...

    Thanks again for posting another article Summer...

    Interesting that we now know that XMRV was found in patients going back to 1984. I guess the next question is, is it the same retrovirus as the one Defreitas found?

    Or has that been answered already?

    d.
  5. dannybex

    dannybex Senior Member

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    Summer...

    Thanks Summer -- I think I did read that somewhere, but my foggy brain separated your name from the story.

    You've contributed so much to this board -- you are DEFINITELY helping solve the mystery! (btw...do you ever sleep?) :)

    I'm assuming Elaine DeFrietas is still alive. Have you heard anything about her reaction to this news?

    d.
  6. anne

    anne Guest

    This is great. I do wish she had gotten in something about the cooked sample in the sex abuse study--there's nothing in the editorial to show there's anything wrong with the study.
  7. Jerry S

    Jerry S Senior Member

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    Wow! Double Wow!

    Hillary couldn't get better exposure than this. Amazing!
  8. Advocate

    Advocate Senior Member

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    Hillary's op-ed column offers a great opportunity for us to help ourselves:

    1) Write a letter to the editor of the New York Times. Even if the letters are not published, they will let the editors know that this is an important story and encourage them to continue covering it.

    <letters@nytimes.com>

    2) Go to the story and click on the box that says "E-MAIL." Send it to each of your own e-mail accounts, if you have more than one. Also e-mail it to as many friends and acquaintances as you can think of. Our combined effort might get the column into the #1 spot on the NYT list of most e-mailed stories. Or at least in the top 10.

    http://www.nytimes.com/2009/10/21/opinion/21johnson.html?emc=eta1
  9. Summer

    Summer Senior Member

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    Someone on this board said Elaine is indeed alive, as I asked the same question, and yes, I do sleep. :)
  10. anne

    anne Guest

    Agreed with everything said by Advocate. Also, this might be a nice time to email
    Kathleen Sebelius....
  11. anne

    anne Guest

    By the way, if you can get your hands on an NYT, look at the placement of this opinion. It's the top opinion and takes up a good portion of the page. This is really a stunning development.
  12. Cort

    Cort Phoenix Rising Founder

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    An amazing piece and another big, big win for the ME/CFS community. I definitely have my differences with her at times but nobody can bring it like Hilary -that's for sure. Who would have thought a month ago we'd have a big opinion piece on the NYTimes?

    I'm not worried about the sex abuse sentence- it was odd it was in there - I'll bet my bottom dollar they told her it had to be in there; I can't imagine Hillary Johnson putting that in there herself! I think it'll completely get lost in the rest of the paper.

    Things like that - full opinion pieces in the New York Times really get legislators attention - and therefore the the attention of the NIH and the CDC. Dr. Peterson is talking on XMRV at the CFSAC Meeting but don't miss the presentations before him; the NIH and CDC will have address how they are going to respond to this big finding in their presentations. They'd better have something pretty significant to say. That should be very interesting.

    Good idea Aftermath - I'm going to email it to 500 people!

    Here's the Agenda:

    9:00 a.m.

    Call to Order
    Opening Remarks

    Roll Call, Housekeeping

    Dr. James Oleske
    Chair, CFSAC

    Dr. Wanda Jones
    Designated Federal Official

    9:15 a.m.

    Agency Updates: HRSA, SSA, NIH, FDA, and CDC


    Ex Officio Representatives

    10:15 a.m.

    Presentation: XMRV Association with CFS

    Dr. Daniel Peterson
    Whittemore Peterson Institute

    11:15 a.m.

    Committee Discussion

    Committee Members

    12:15 p.m.

    Public Comment

    Public
  13. anne

    anne Guest

    There's part of your supernova, Cort!
  14. Cort

    Cort Phoenix Rising Founder

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    The Supernova is spreading! It just hit the most important opinion page in the world! (We have friends at the New York Times). The fact that such a damning piece on the CDC made it into the New York Times is amazing. I'm sure she had to draw in her sword quite a bit - but what came across from me more than anything - is how badly mishandled this disease has been by the federal government. Hopefully that peace will spark conversations about that by our officials in the federal government. It wasn't just that they missed this discovery - it was that they never tried! The federal government has never even begun to try to really figure out this disease.

    Our representatives should really know about that piece and our demands that this disease is finally funded appropriately.
  15. kurt

    kurt Senior Member

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    maybe some justice

    Very nice op-ed piece by Hillary! We just started reading her book, maybe someday this story should be a movie. But it is not over yet, we still need that satisfying ending ... justice must be done.

    Would be nice to see someone write a similar op-ed piece for the Washington Post. Maybe some health-politics watchdog institute in DC would be willing to take that on? Anyone familiar with some of those groups?
  16. Wayne

    Wayne Senior Member

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    Hi Cort, Hi All,

    Cort, I chuckled as I read Hillary's piece as it was pretty noticeable to me that she had drawn her sword in quite a bit. But it still came across as pretty sharp and poignant, but couldn't quite call it her normal "scathing prose". LOL

    I agree, she can bring it on like just about no other. I have only in my dreams envisioned her getting a chance at a NYT op-ed piece. It would seem to me that this whole thing unfolding as it is should have the CDC and some of the powers that be back on their heels. I sure hope Hillary gets more opportunities to keep them there, and perhaps even topple some of the main pillars.

    I've been sending my partner lots of news articles and even posts here on this board since this broke on Oct. 9. I asked her a couple days ago how she was thinking about it all, as I wasn't sure she was viewing it the same as most of us are. Her response (exclamation) was, "Oh, it feel like a big black cloud has been pierced by a bolt of lightning." I interpret that as a reference to the CDC and the huge amount of damage they have wrought throughout our medical and social culture. Kudos to Hillary, she's been a warrior for us the whole way.

    Thanks Summer for posting this, and also for many of your other links. I very much appreciate your contributions here! :)

    Regards, Wayne
  17. Koan

    Koan Be the change.

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    Well said, Cort! I feel another Cort blog coming on!

    The statement in her piece that really got me was:

    "Had the agency done nothing in response to this epidemic, patients would now be better off. The name functioned as a kind of social punishment."

    Like a chastised child, many of us have stopped doing the bad thing: we've stopped talking to doctors about our illness.
  18. kurt

    kurt Senior Member

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    maybe some justice

    Hillary, you have got me thinking...

    I realize that at this point XMRV is not a proven cause, but in a few months we should have some validation. So, just for fun, imagining that we might actually be able to make an equity argument, as a retrovirus with unknown long-term outlook, we might compare ourselves with that 'other' retrovirus, HIV. So, I looked up total US Federal funding for AIDS research over the past 10 years. The total outlay was $190,000,000,000. Count those zeros, that is 190 BILLION dollars. I could not find exact figures for the prior years, but what I did find suggested more than 25 Billion was spent previous to 1999. My brain can not even comprehend how all that money might have been spent. Some pharmaceutical companies have probably gotten very, very rich from HIV. And a lot of AIDS support programs must have been flush with cash. That is the political reaction to a single retrovirus infection. No wonder the government did not want a second retrovirus. But justice is required by law, and they really did spend that much on AIDS so far, and no end is in sight.

    Regardless of the deadly past of HIV/AIDS, As Nancy Klimas states, AIDS patients today are better off than CFS patients, and there are more people infected with XMRV than with HIV, more than 10x the infection rate if the WPI numbers hold up.

    If CFS advocates play their cards right, we really could be in a new world here.
  19. hvs

    hvs Senior Member

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    :eek: Everyone's excited, but I think the importance of this can hardly be overstated. This is like a battleship letting loose a full broadside at the CDC. It is the most important public forum in the world and all is a perfect bullseye stem to stern. She did rein herself in and unloaded with pure facts. No hyperbole, no Godwin's Law. Everything she states can be verified or is part of the public record.

    Everyone from Sibelius on down had this appear on their desk this morning. They have two choices, neither of which is good for them. They can

    1) Turn their ship and try unload a broadside at Johnson, the WPI (and, er, the NIH and Cleveland Clinic?), Klimas, etc. In other words, dig in their heels as Reeves wants to.

    or

    2) Come around and get down to the real business of responding to this retroviral disease.

    My point is, this editorial forces their hand. They have to go one way or another, in my opinion. Reeves does, too, it seems to me. Retire or get on board. He might have whistleblower protection, but he can still get his marching orders from above. They seem to now be limited to play ball, shut up, or--if they choose--keep obfuscating.
  20. Koan

    Koan Be the change.

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    This is also the most accurate, precice and understandable description of what it's like to live with this illness:

    "Many people dont realize how severe this illness can be. It is marked by memory and cognition problems, and physical collapse after any mental or physical exertion."

    I think that anyone reading this can understand how harrowing this can be to live with and also why they can't see it when they look at us.

    This editorial, in this venue, is in itself a huge step forward.

    I put it on my wall on Facebook. I don't post about ME on Facebook. I posted the research and, maybe, one other thing that I felt would probably be ignored.

    I don't court conversations about this with anyone who doesn't have it. I just don't talk about it. But, this... well, this changed everything.

    Again.

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