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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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Newsweek: Validation In A Virus?

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by shannah, Nov 28, 2010.

  1. shannah

    shannah Senior Member

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    Validation In a Virus?
    For years, chronic-fatigue syndrome has been dismissed by the medical establishment. Now researchers may be closing in on a culprit.

    Its hard, even years later, to read Laura Hillenbrands wrenching description of her pain. Hillenbrand, 43, is the author of Seabiscuit and the new and widely acclaimed book Unbroken, an account of the World War II bombardier Louis Zamperini. But she is also the most articulate spokesperson for chronic-fatigue syndrome, the mysterious disorder that has plagued her since college. In an essay she wrote for The New Yorker in 2003, Hillenbrand described her aching joints, swollen glands, nausea, and exhaustion. The debilitating and unproductive trek from doctor to doctor. The disregard, the shame, and the elusive quest for relief. Chronic-fatigue syndrome plunged Hillenbrand into a state of disorientation; words looked like meaningless shapes; thoughts disappeared. I was at a sensory distance from the world, she wrote, as if I were wrapped in clear plastic.

    It is a metaphor for the illness itself. For decades, chronic-fatigue syndrome has been mired in layers of medical and scientific uncertainty. Since Hillenbrands symptoms emerged in 1987, doctors awareness has grown and researchers have come up with tantalizing hypotheses about how the disorder has made as many as 4 million Americans sick. But every advance seems to come with a caveat, including a recent series of dramatic and confounding discoveries. In August a team of researchers led by the National Institutes of Health and the FDA announced that theyd found evidence of a family of retroviruses in the blood of patients with chronic-fatigue syndrome. The study mirrored an earlier report, published last year, which was celebrated by patients because it raised the possibility of pinpointing a cause and a treatment. But a third major study published this summer by the Centers for Disease Control and Prevention found no such link. The big hope now is that a new nationwide investigation, directed by a leading virologist at Columbia University, will bring greater urgency and find some clarity within the next 12 to 18 months. Cutting-edge science is often not definitive, says Dr. William Schaffner, an infectious-disease expert at Vanderbilt University School of Medicine. Keep your seat belts tight.

    Its been a long ride. Since the illness first surfaced in the U.S. in the 80s, chronic-fatigue patients have endured skepticism from doctors, who have not known what to make of a constellation of symptoms that has no known cause, no diagnostic test, and no specific treatment. Many patients, including Hillenbrand, have been referred to psychiatrists. For years the disorder was not a priority at the highest levels; in 1999 a government audit found that the CDC had diverted millions of chronic-fatigue research dollars to other programs. The complex disorder continues to baffle the medical community because symptoms can vary dramatically over time and the spectrum of patients is vast. Some hold it together during the week but collapse on weekends; the most severely affected are bedridden. Even though chronic-fatigue syndrome isnt a death sentence, its a life sentence, says Kim McCleary, president of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America, a leading funding and advocacy organization. People lead diminished lives because of the illness.

    What patients want is scientific validation. In the study published last year, researchers led by Judy Mikovits, of the Whittemore Peterson Institute (WPI) in Reno, Nev., identified XMRV, an infectious retrovirus in the same family as the AIDS virus, in the blood of 67 percent of patients suffering from chronic-fatigue syndrome. Theres no question its in the people we found it in, says Mikovits. The NIH study detected the DNA of viruses related to XMRV in 87 percent of its patients, compared with only 7 percent of healthy controls. But other studies, including the CDCs report and several in Europe, found nothing. Nobody knows why with any certainty. Viral testing methods differ among labs. Its also possible that the virus is endemic to certain geographic areas and not to others. Perhaps most significant: some patients, including those studied by the WPI and the NIH, are much sicker than others. It just highlights that theres still a lot we dont know about this virus, says the CDCs Dr. Steve Monroe.

    Including: how do humans get XMRV in the first place? No one has any idea, says Mikovits. Researchers emphasize that its still not known if the virus family detected actually causes chronic-fatigue syndrome. It could be a bystander effect, says the NIHs Dr. Harvey Alter. But the possibility of infection has raised concern. Earlier this year an international blood-bank association urged members to discourage chronic-fatigue patients from donating because of the potential risk of transmitting the virus. The American Red Cross goes even further, deferring indefinitely any donor who reveals she has been diagnosed with chronic-fatigue syndrome or an XMRV infection.

    Today, doctors prescribe an array of treatmentsincluding exercise programs, cognitive behavioral therapy, painkillers, and sleep medicationsto relieve symptoms. But if chronic fatigue is caused by a virus, it raises the question: should patients be on antiretrovirals, the same drugs prescribed to people with HIV? Some chronic-fatigue patients are already taking them off-label, but they can have serious side effects. Dr. Andrew Mason, a virologist at the University of Alberta in Canada, says its time to launch a well-planned clinical trial to test the drugs effectiveness. It wasnt until antibiotics were prescribed to treat peptic ulcers, says Mason, that the medical community finally accepted bacteria as the culprit. Its the only way to win this battle, he says.

    But, as with so many aspects of chronic-fatigue syndrome, there is disagreement here, too. Other specialists say the science needs to be on firmer ground before trials are launched. Patients are clearly ill and suffering, and we need to address treatment as rapidly as we can, says Dr. Ian Lipkin, director of Columbias Center for Infection and Immunity. But the first order of business is to determine if the association is real.

    In early November U.S. researchers met with Lipkin, who is spearheading the next phase of research. The plan is to collect blood samples from at least 150 patients across the U.S. with similar disease characteristics, then compare them with healthy controls matched for age, sex, and geography so that scientists can sort out the confusion and establish as conclusively as possible if a viral link is valid.

    Scientific discovery is never straightforward, much as we all want it to be. More often than not, its a tangle of hunches, studies, disagreements, false starts, tangents, and frustrations. One day, everybody hopes, the layers of wrapping will come off. The causeor, very possibly, causesof chronic-fatigue syndrome will become clear. Treatments will become available. And Laura Hillenbrand and millions of others can start reclaiming their vitality and their lives.


    http://www.newsweek.com/2010/11/28/could-a-virus-cause-chronic-fatigue-syndrome.html#
  2. Sasha

    Sasha Fine, thank you

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    Thanks, Shannah - I'd recommend clicking through to the link (and then on the big "N" in the top left corner to get to the article) so they get lots of hits and are encouraged to keep covering this. It's great that the story has made it to Newsweek.
  3. KHeckenlively

    KHeckenlively

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    This is a very interesting article. I'm sure there are some legitimate concerns about the prominence given to some people from CDC, especially when their efforts have been so poor at detecting the virus, but this seems like an early Christmas present. I know there is more information they could have put in there, but at this point it's probably as much as one will get in a mainstream publication.

    The bigger question for me is what's really going on behind the scenes. Are the governmental health authorities getting ready to announce XMRV and related viruses are a serious health concern, or are they getting ready to dismiss it? Personally, it seems like they are getting ready to say it is a serious problem, but I can say I'm completely certain of that belief.

    All the best,
    Kent.
  4. Dreambirdie

    Dreambirdie work in progress

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    Yes! Great idea!
  5. urbantravels

    urbantravels disjecta membra

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    Is this in fact true? I thought that here in the US we were still in the "discourage" phase of things, and that US blood donors are still not indefinitely deferred.

    Seems like a pretty good article, for a short and lightweight overview - it skates lightly over many of the most fraught issues with regard to ME/CFS but considering its length I don't think one could have expected a more in-depth treatment. What I like about it is that it appears in a mainstream media source, is sympathetic (emphasizing at several points that the suffering and debility we suffer is very real) without being too overheated, and it adds to the (still pretty slender) volume of mainstream media coverage of recent developments. I look forward to the day when there will be lots of media coverage that reaches the broader public, so that more people get the memo that yes, this is a serious and debilitating disease, not just some neurotic fad from the 80s.

    Speaking of the 80s, my family used to get Newsweek magazine, and I was a teenager in the 80s, so a lot of what happened then I learned about through Newsweek. I remember reading about the mysterious "yuppie flu" in Newsweek all those years ago. Never would have guessed that I'd find myself felled by the yuppie flu in my 40s, and so little progress made toward figuring it out and curing it.
  6. Enid

    Enid Senior Member

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    What a marvellous article - clear and articulate (how well known all the symptoms). Think we are relying on you in the US for the research growing understanding. Many thanks for posting.
  7. shannah

    shannah Senior Member

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    I don't know know how many are clicking on the link but it is a good idea. There is a pretty good picture representing us too. No mice though!
  8. shannah

    shannah Senior Member

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    Just a reminder that there is a space for comments. Just scroll on past several ads. Looks like one person has been very busy posting I think 11 times!
  9. meadowlark

    meadowlark Senior Member

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    The Red Cross's use of the phrase "deferring" implies that they absolutely don't accept our blood. Nice dodge on their part. I was one of many who queried the Red Cross about infection of their blood supply when they asked for questions one day on facebook. (That thread has disappeared.) IIRC, it turned out that "indefinite deferral" simply means that a brochure for blood donors asks that those with a diagnosis of ME/CFS not give blood. But who even sees that pamphlet, let alone reads it? A number of posts asked whether we were actually forbidden to give blood, or if donors were required to read the elusive pamphlet. Their answers were evasive. (Perhaps someone else remembers the specifics.) But it was clear from the thread that this phrase is bombast, created to disguise a half-measure on their part.
  10. urbantravels

    urbantravels disjecta membra

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    I'm familiar with what "indefinitely deferred" means - it really means "banned for life," but they don't put it that way because it doesn't sound so nice. They didn't make that term up just for us, it applies to everyone with a disqualifying illness or medical condition or life history (i.e. lived in certain countries - the UK during mad cow disease, or many parts of Africa. I always used to get grilled because I was in Africa for two weeks in 2003.)

    My point was that US blood donation agencies have NOT yet taken the step of requesting "indefinite deferral" as a donor for anyone with a CFS diagnosis. Other countries have, but the United States has not yet. The latest official word was this bulletin (June 18)

    <http://www.aabb.org/pressroom/Pages/cfsrecommendation.aspx>

    So the article was wrong in stating that the American Red Cross has actually taken the step of indefinitely deferring CFS patients as donors...unless the reporter actually contacted the Red Cross and was told that. Here's what I found on the Web from a Red Cross chapter:. It's quite possible that this particular web site is simply out of date. But I have not been able to find any information contradicting it on the official Red Cross web site.

    http://chapters.redcross.org/ky/rivervalley/eligibility.htm#chronicill

    The official blood donor eligibility guidelines are listed at the Red Cross main website more vaguely:

    http://www.redcrossblood.org/donati...nts/eligibility-criteria-alphabetical-listing

  11. meadowlark

    meadowlark Senior Member

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    Hi urbantravels: I'm sorry I misunderstood you (brain fog). To correct my post, that thread is still up, after all. It occurred on Nov. 9. The Red Cross answered queries by stating that "pending the availability of further data, the Red Cross follows AABB recommendations." Another poster then found the AABB statement that you quote. The ARC also responded that "during the blood donation process, donors must read booklets that list all potential reasons for deferral. XMRV is listed in this donor education material as a reason for indefinite deferral - the donor must make it known, when asked if any of the items listed in the booklet applies to them, that they have had XMRV or CFS. If the donor makes it known, then they will be indefinitely deferred from donating blood. As with the other conditions for deferral listed in the reading material, donors will not be actively asked if they have had XMRV or CFS in the past - they must read the guidelines and identify themselves." No one could find that booklet's content on the web, and its not clear to me what organization wrote it.
  12. urbantravels

    urbantravels disjecta membra

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    That poor flunky who was put in charge of the Red Cross Facebook page and subsequently got the pile-on from CFS patients never knew what hit him/her. Probably that person didn't have immediate access to anyone at a top level who could actually address the question.

    I've given blood many times (before I got ill), always at the same place - the Red Cross at the VA campus in Los Angeles. There was no one "booklet" but rather a hodge-podge of different material in a binder, obviously all added at different times and all looking different - different typefaces etc. They give you the binder and require you to read it every time you come in to give blood, even if you do it several times a year and have seen it all before. I don't remember any mention of "chronic illnesses" in general and certainly never saw any mention of chronic fatigue syndrome in the materials. There are specific diseases that they mention - Chagas Disease, babesiosis, leishmaniasis, and of course hepatitis and HIV/AIDS.

    Since I haven't given blood since 2008, there may well have been material added to the binder that I haven't seen. I also have no idea if the materials are any different from chapter to chapter, or if non-Red Cross blood collection agencies use different materials or guidelines. I wonder if there are any other conditions that are in the "strongly discourage" category but not actual grounds for "deferral"? I don't remember anything in the binder that says "You probably SHOULDN'T give blood if you have X, y or Z but we can't actually prevent you." It was pretty black and white that if you had anything specifically mentioned in the binder, you should hit the bricks and not donate.
  13. Wayne

    Wayne Senior Member

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    Hi Shannah,

    Thanks for posting this. I also thought the image was an excellent one. Sometimes images can convey far more than the written word. I think the written word in this case was also very well done.

    Wayne
  14. shannah

    shannah Senior Member

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    Yes Wayne, I agree with you. I thought the picture spoke volumes - one of them being how we are mere ghosts of our former selves.
  15. Forebearance

    Forebearance Senior Member

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    I think the author got one fact wrong. XMRV is not in the same family of retroviruses as HIV.
    Otherwise, I liked the article!
  16. beesknees

    beesknees Senior Member

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    I really love the image they used also. It's visually stunning and gives a accurate look at CFS.

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