Phoenix Rising: The Gift That Keeps on Giving All Year Long
This holiday season Jody Smith turns her eyes to the people of Phoenix Rising and gives thanks for you all ...
Discuss the article on the Forums.

Medscape updated article on AABB ban

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Rivotril, Jun 17, 2010.

  1. Rivotril

    Rivotril Senior Member

    Messages:
    154
    Likes:
    0
    Article Medscape

    if posted already , please delete:

    http://www.medscape.com/viewarticle/723716

    some quotes (but there is a lot more good stuff in it)

    katz": "Doing nothing while we sort out the science is not going to be an option."

    coffin: He also dispelled the criticism of some researchers that the blood samples in the Science-published study could have been contaminated, pointing to the authors' comment that the patients had an immune response to XMRV. "The presence of antibodies is an important confirmation that patients were infected and that contamination was not an issue," he said.
     
  2. Rivotril

    Rivotril Senior Member

    Messages:
    154
    Likes:
    0
    if link wont work: here the whole text;

    Controversy Continues on Whether XMRV Retrovirus Contributes to Chronic Fatigue Syndrome

    Kathleen Louden
    Authors and Disclosures





    June 17, 2010 — Concern that a new human gamma-retrovirus may be transmissible through blood has led one infectious diseases specialist to recommend new steps to protect the US blood supply against possible infection with the virus.

    The transfusion medicine organization AABB has formed a task force to study the transmission potential of xenotropic murine leukemia virus–related virus (XMRV), which has been linked to familial pancreatic cancer and, more recently, to chronic fatigue syndrome (CFS).

    "I think the task force is very close to a recommendation that we provide donors with information about CFS and XMRV and ask CFS-affected donors to defer themselves," said Louis Katz, MD, executive vice president of medical affairs for Mississippi Valley Regional Blood Center in Davenport, Iowa, and a member of the task force.

    Speaking at an American Society for Clinical Pathology teleconference June 11, Dr. Katz said he spoke for himself, and not on behalf of the AABB or its task force.

    Transmission Risk Unclear

    Concerns about the potential for XMRV to be passed through blood arose after publication in the October 23, 2009, issue of Science of an article by Lombardi et al (Science 2009;326:585-589). That study found XMRV in peripheral blood mononuclear cells from 67% of 101 patients with CFS compared with 3.7% of 218 healthy controls. The authors reported that they could secondarily transmit the virus from the blood cells and plasma of infected patients with CFS, raising the possibility of blood-borne transmission.

    The new virus is a retrovirus similar to HIV, but with apparent differences, including fewer cycles of virus replication. However, no transmission event of XMRV through blood transfusion or transplantation has been identified, according to a February 18 fact sheet from the Centers for Disease Control and Prevention, Atlanta, Georgia.

    Furthermore, several subsequent studies from Europe, which reportedly attempted to replicate the findings of Lombardi and coworkers, failed to find XMRV in patients with CFS (including a UK study published in the January issue of PLoS Pathogens). Finally, although XMRV was initially discovered in tumor tissue of a subset of patients with pancreatic cancer (according to results published in March 2006 in PLoS Pathogens), other studies have had varied results in finding the virus in pancreatic tumors.

    The mixed results leave the significance of XMRV unclear, experts say. Retrovirologist John Coffin, PhD, a research professor at Tufts University in Boston, Massachusetts, told Medscape Infectious Diseases, "The take-home message is we don't know yet whether there is a causal role of XMRV for any human disease."

    Dr. Katz agreed, but said, "Doing nothing while we sort out the science is not going to be an option."

    His blood center, Dr. Katz told Medscape Infectious Diseases, is developing a policy to give informational materials to all prospective donors at registration that asks them to not donate blood if they have or ever had a diagnosis of CFS. He said the center will retain the donors' contact information in the event that the possibility of XMRV transmission through blood is ruled out.

    Given that many symptomatic individuals with CFS are very ill and unlikely to donate blood, Dr. Katz said, "I think the impact on the donor base will be quite small."

    The Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association of America, based in Charlotte, North Carolina, has long recommended that individuals with CFS voluntarily not donate blood or organs. Reasons include affected individuals' frequent low blood volume, orthostatic intolerance, and rate of infections. Three countries currently ask people with CFS to not donate blood: Canada, Australia, and New Zealand.

    Lucinda Bateman, MD, a CFS specialist in Salt Lake City, Utah, said she would discourage her patients with the syndrome from donating blood, and not just because of their illness. "Why donate blood when there's a question whether XMRV is a problem?" she commented to Medscape Infectious Diseases.

    Research Tries to Validate XMRV–CFS Link

    Dr. Bateman's research team is among a number of groups conducting studies to look for XMRV in samples of patients with CFS, but they do not yet have results.

    "Retrovirologists are feverishly working on this," she said.

    Dr. Bateman is not surprised that various research groups in Europe have been unable to find XMRV in blood samples from people with CFS. The difficulties in obtaining consistent results are numerous, she said. They include differences in patient populations and testing methods used between laboratories, as well as the small quantities of virus found in blood cells of infected patients so far, which make it difficult to measure. For that reason, researchers are not sure whether to measure the virus in blood cells or tissues, according to Dr. Coffin.

    Even the diagnosis of CFS is not standardized. The 1994 Centers for Disease Control and Prevention case definition of CFS (called the Fukuda criteria) is nonspecific and may capture in the diagnosis some non-CFS conditions such as fibromyalgia, Dr. Bateman said.

    "The biggest stumbling block is we don't have a good [diagnostic] assay for XMRV," she said. "I'm telling my patients the test isn't ready."

    Detection Tests Need Standardization

    Although several XMRV assays have been developed, "at present, there is no standardized, validated assay for the virus," said Simone Glynn, MD, director of the Blood Resources Program of the National Heart, Lung and Blood Institute (NHLBI) and cochair of an NHLBI scientific research working group formed to evaluate whether XMRV poses a threat to blood safety.

    The NHLBI is leading a study that compares the sensitivity and specificity of the available tests for the virus, a first step in standardizing the assays. Results of the NHLBI Retrovirus Epidemiology Donor Study–II are expected within the next few weeks, Dr. Glynn told Medscape Infectious Diseases.

    Once an assay is standardized, researchers can use it "to mount proper epidemiological studies in very large groups of patients," Dr. Coffin said.

    Among the XMRV assays that have been developed is one by the Whittemore Peterson Institute for Neuro-Immune Disease in Reno, Nevada. Researchers at the institute coauthored the Science article last fall, along with scientists at the National Cancer Institute in Bethesda, Maryland, and Ohio's Cleveland Clinic. The institute's assay is expected to be commercially available by the end of June, according to a statement from Reno-based Viral Immune Pathways Diagnostic, the lab that has a nonexclusive license to administer the test in the United States.

    Although benefits to patients of XMRV testing are unclear to some researchers at this time, Annette Whittemore, president and founder of the Whittemore Peterson Institute, told Medscape Infectious Diseases that there are many reasons to continue to test for the virus. One is that retroviruses cause lifelong infection. Also, she said, more detailed testing has found that 99% of the original patient samples are positive for XMRV — far above the 67% the researchers reported.

    "No other single pathogen has been found associated with this disease at this rate," she said.

    Testing for XMRV also will allow researchers to study whether they can connect CFS symptoms to XMRV infection and to test for other disease associations, Whittemore said.

    Countering the Criticism

    The lack of a standardized test has not kept research teams from trying to find XMRV in their own patients with CFS. However, the studies published this year that failed to do so did not use all 4 of the virus detection methods used by Lombardi and colleagues, so Dr. Coffin said it is not clear that they are "true" replication studies.

    He also dispelled the criticism of some researchers that the blood samples in the Science-published study could have been contaminated, pointing to the authors' comment that the patients had an immune response to XMRV. "The presence of antibodies is an important confirmation that patients were infected and that contamination was not an issue," he said.

    Some researchers also wrote that the patient population from which Lombardi and colleagues obtained blood samples was not representative of typical patients with CFS, partly because all the patients had severe disability, and some had immunologic perturbations. Others objected on the basis of a statement in the online supporting materials: "Samples were selected from several regions of the United States where outbreaks of CFS had been documented."

    Although some construed this to mean the patients were from clusters of CFS, such as occurred in Incline Village, Nevada, in the 1980s, Whittemore said that was not the case."Only 25 of the 101 patients became ill around the same time and location. Seventy-five percent of the other patients did not become ill in an identified cluster," she said on behalf of the institute's researchers, who were unavailable for comment.

    To encourage replication studies, the institute has sent reagents and patient samples to independent research groups around the world, she said.

    Unanswered Questions

    Still, even if other institutions find an association between XMRV and CFS, it does not prove that the virus causes CFS or that it is the only cause, Dr. Coffin said.

    Whittemore said their researchers do not believe that XMRV is the sole cause of what she calls ME (myalgic encephalomyelitis)/CFS. "It may, however, be the underlying cause of ME/CFS and other neuroimmune diseases," she said.

    In the meantime, the millions of patients with CFS and the physicians who treat them must wait for answers. However, some patients with CFS reportedly are using antiretroviral drugs intended to treat HIV infection, according to a June 8 article in the Chicago Tribune.

    "I think it's premature to put patients with CFS on antiretroviral drugs, which are quite toxic," Dr. Bateman said. "There are so many unanswered questions."

    Dr. Katz, Dr. Coffin, Dr. Bateman, and Dr. Glynn have disclosed no relevant financial relationships. Whittemore disclosed that the Whittemore Peterson Institute will acquire Viral Immune Pathways Diagnostic and will earn royalties on each XMRV test conducted; she and her family put their financial interest in Viral Immune Pathways Diagnostic into a trust to benefit the institute.
     
  3. Dr. Yes

    Dr. Yes Shame on You

    Messages:
    867
    Likes:
    43
    Great to see this in Medscape, isn't it?

    Of course, they meant prostate cancer, not "pancreatic".
     
  4. George

    George waitin' fer rabbits

    Messages:
    851
    Likes:
    80
    South Texas
    Awesome

    Great find! Thanks for posting the whole article. In fact this is so nice I'm not even going to hump the doctors leg right now. (grins) You get a freeby doc!
     
  5. V99

    V99

    Messages:
    1,471
    Likes:
    5
    UK
    GEORGE!! woof
     
  6. Dr. Yes

    Dr. Yes Shame on You

    Messages:
    867
    Likes:
    43
    On its homepage, Medscape has a poll for various professionals on this subject, too; though it does not give a breakdown of numbers of poll-takers according to profession, it does give the percentages for physicians, nurses, and pharmacists by their responses:

    There is also a category for "All Professions", with the results:
    A: 64%
    B: 18%
    C: 17%

    I find the percentages for option B surprisingly high; physicians (perhaps predictably?) were the most cautious, but still close to 10% in favor of prescribing antiretrovirals. Again, we don't know how many physicians were surveyed, or what their specialties are, but the total number of people from all other professions was 401 last time I checked.


    ETA - George, fer cryin out l-- YOU SAID YOU WOULDN'T HUMP MY LEG!!
     
  7. CBS

    CBS Senior Member

    Messages:
    1,502
    Likes:
    845
    A step towards a standardized test coming sooner than I was expecting (but not sooner than I was hoping). This could go a very long way towards explaining differences between labs (per Dr. Klimas' comments at the end of May).
     
  8. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,510
    A positive sounding article (assuming we want a retrovirus!). Interesting stuff - the Coffin quotes here sound rather pro-WPI, especially when compared to the quotes from the Trine article.
     
  9. CBS

    CBS Senior Member

    Messages:
    1,502
    Likes:
    845
    I want to tread very lightly here given the contentiousness over the last several weeks but I would suggest that we try not too read too much into comments by non-WPI affiliated researchers.

    Interpreting comments as either pro or con WPI seems to unnecessarily set the stage for divisiveness on such an emotional topic. I'd like to think that what Coffin cares about is good science, learning everything possible about XMRV and providing the best care for CFS patients, not the WPI.
     
  10. Anika

    Anika Senior Member

    Messages:
    148
    Likes:
    28
    U.S.
    New Medscape Article on XMRV, Blood Supply, and CFS - June 17

    Rivotril,

    Interesting article - thanks!

    Even though there's not necessarily a lot of "new" news for those of us who have followed XMRV, I think Medscape is followed by more people, both medical and laypersons. So its good to see them provide balanced coverage.

    I almost missed this post - even though it's under XMRV caption, since it didn't have XMRV in its title it almost missed my attention - Medscape covers almost anything medical. I wonder if this thread might get more attention (here and google?) if its title were something like "New Medscape Article on XMRV, Blood Supply, and CFS - June 17". (I put that in my message title, so maybe it helps a google search).

    [Btw, I don't know if this type of change could even be done by the original poster vs a moderator - sorry I'm not more famiiar with the mechanics.]

    Great find!

    Anika
     
  11. ixchelkali

    ixchelkali Senior Member

    Messages:
    1,105
    Likes:
    274
    Long Beach, CA
    Nice balanced tone, not hysterical either way. Overall, the sort of article I'd be happy to have my doctor read. But it does bother me that a website that provides CME materials to medical people, and an article written by "an award-winning writer and board-certified editor in the life sciences with more than 20 years' experience in medical communications" mixes up prostate cancer and pancreatic cancer. Like "oh, who cares? It's some organ that begins with P..." :rolleyes:

    I'm liking Dr Coffin more and more. He seems to stand on the side of good science. And good for Dr Katz for going out on a limb and not waiting for large epidemiological tests to be completed before trying to protect the blood supply; maybe some people did learn something from the AIDS epidemic. At this point "Better safe than sorry" makes sense to me. And as he points out, it's unlikely to have a major effect on the amount of blood available, so they don't have a lot to lose.
     
  12. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,472
    Likes:
    498
    Clay, Alabama
    Sending this to my pharmacist now.

    This is great article. I loved it.

    It had some new info. Coffin's quote, if accurate, is more definitive on the contamination than any I have seen before. (Take that you opposers.)

    Tina
     
  13. glenp

    glenp "and this too shall pass"

    Messages:
    753
    Likes:
    17
    Vancouver Canada suburbs
    Ty for posting this - i hope i can find it tomorrow when my brain is working a lil better.

    glen
     
  14. Rivotril

    Rivotril Senior Member

    Messages:
    154
    Likes:
    0
    Anika, I agree that this article seems to bring a lot more than I thought at first sight.
    Unfortunately I cannot change the title of the topic.
    @mods, can you please change the title of this topic to: "New Medscape Article on XMRV, Blood Supply, and CFS - June 17".

    thanks Rivotril
     
  15. Mithriel

    Mithriel Senior Member

    Messages:
    647
    Likes:
    694
    Scotland
    This is what we want isn't it. Neutral observers looking at the science. No digs at the population, no deniable insinuations about contamination ......

    I think the pancreatic/ prostate thing is probably an example of the "spell checker" problem where you click on the wrong line or trying to take notes while someone is talking.

    The more I think about antiretrovirals and their side effects the angrier I get with McClure and Wessely.

    They keep saying their study was rushed out because of a worry about patients taking these drugs that might be dangerous yet they happily force patients into GET when they know that patient surveys say that up to half get worse with it and some end up bed bound, unable to bear touch sound or light, tube fed and incontinent.

    Where's their vaunted compassion and worry about patients there?

    Mithriel
     
  16. V99

    V99

    Messages:
    1,471
    Likes:
    5
    UK
    This was posted on WPI Facebook page. They say it has been updated.

    http://www.medscape.com/viewarticle/723716

     
  17. V99

    V99

    Messages:
    1,471
    Likes:
    5
    UK
    I cannot see any update?
     
  18. Sean

    Sean Senior Member

    Messages:
    3,250
    Likes:
    17,958
    This is the study I am interested in.
     
  19. ixchelkali

    ixchelkali Senior Member

    Messages:
    1,105
    Likes:
    274
    Long Beach, CA
    On the whole, a very good article, I'd say. Balanced, and discusses the issues and controversies intelligently, without obvious bias. Although citing the Chicago Tribune article as a source makes me cringe, especially since Tsouderos implied that taking anti-retrovirals is more widespread than the evidence suggests. Dr Coffin is a much better source, and I'm glad he's becoming the go-to guy for "impartial" quotes.
     
  20. ixchelkali

    ixchelkali Senior Member

    Messages:
    1,105
    Likes:
    274
    Long Beach, CA
    Well, they fixed the part where they had said XMRV was found in pancreatic cancer...
     

See more popular forum discussions.

Share This Page