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CFS Panel Wants Name Change for Disorder

Discussion in 'General ME/CFS News' started by Ember, Oct 14, 2010.

  1. Ember

    Ember Senior Member

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  2. shannah

    shannah Senior Member

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    The article refers to it as CFS-ME throughout. Yet what I remember hearing from the meeting is that the final recommendation was ME CFS (not CFS ME) although there was discussion on both.
     
  3. George

    George waitin' fer rabbits

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    Yes it was recommended as ME/CFS someone needs to leave a comment for a correction. I'd do it but I'm stuck on the phone right now.
     
  4. Mark

    Mark Former CEO

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    It's not an exceptionally bad report this one but there's a really special little quote in it:

    "And just this week, three additional studies published in the Journal of Infectious Diseases found no link between the virus and the CFS."

    Well considering that only one of the 3 even studied any ME/CFS patients at all !!! - the other two were a positive study in prostate cancer, and a 0/0 study looking at HIV/Hep C - and that the one that did include ME/CFS patients (about 30 of them from a total of nearly 300) was another 0/0 study looking at a variety of conditions including CFS - the summary comment that "three additional studies...found no link between the virus and the CFS" is candidate for some kind of prize IMO. In a highly competitive field...

    One can register there and politely point out that the last two sentences in the article are unbelievably misleading...they finish with a mention of "another recent small study"...which got me excited to find out what it was until I found it was Lo/Alter's PNAS paper!!! "Small study" indeed! Hmph! I'm feeling pretty spun out after all that...
     
  5. Dolphin

    Dolphin Senior Member

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    I find it interesting that a reporter of some sort covered the news so quickly. I think this is a positive development. So if people are criticising the article, I hope they will keep this in mind.
     
  6. Mark

    Mark Former CEO

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    This info should be on the relevant threads for those 3 studies if anybody can find those, but I just noticed the title of the Kimata PC study:

    Detection of Xenotropic Murine Leukemia VirusRelated Virus in Normal and Tumor Tissue of Patients from the Southern United States with Prostate Cancer Is Dependent on Specific Polymerase Chain Reaction Conditions


    http://www.journals.uchicago.edu/doi/abs/10.1086/656146

    Can anybody access this one to find out just what those specific PCR conditions necessary to detection might be?...
     
  7. Mark

    Mark Former CEO

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    Indeed, thanks Dolphin: please please please be polite; the issues I highlighted are probably just sloppy journalism and we don't need to go around alienating people publicising news stories like that one.

    ETA: But still, commenting that 3 studies "found no link between the virus and the CFS" when 2 of those studies didn't study a single CFS patient, is pretty special, no?
     
  8. lansbergen

    lansbergen Senior Member

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    Additionally, the failure to detect XMRV may be attributable to differences in the detection techniques employed. We have found that detection of XMRV required rather specific conditions. For instance, at least 600 ng of prostate tissue DNA was necessary for reliable detection with our PCR assay. XMRV was detected in 3.2% of the patients when we initially used 100–140 ng of prostate tissue DNA, compared with 22.2% of the patients when we used 650 ng. Additionally, we found that detection of XMRV from patient specimens, but not from LNCaP cells infected in vitro, depended on the gene targeted in the PCR assay. We were unable to detect XMRV in the patient tissue samples by nested PCR with primers specific for the gag and pol genes, regardless of whether 100 or 650 ng of DNA was used as template. We found the gag primers to be at least 10-fold less sensitive than the env primers, and the pol primers tended to amplify a competing region from the human genome (data not shown). It is unclear whether these deficiencies account for the inability to detect XMRV in patient samples or whether XMRV is mainly present as an incomplete provirus in the cells of these patients. Nonetheless, the difficulty associated with detecting XMRV in patient samples may perhaps explain studies that do not detect the virus among large cohorts. We found our nested PCR assay for XMRV env to be capable of detecting 1 infected cell per 1105 uninfected LNCaP cells in 1 of 3 samples with use of 600 ng of DNA. The fact that the PCR-positive tissue specimens tested positive in only 1 or 2 of 3 replicates may indicate that XMRV provirus is present at a very low copy number.



    In conclusion, our data support a hypothesis that XMRV is endemic to North America.
     
  9. Dolphin

    Dolphin Senior Member

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    Yes, worth pointing out. Just some people don't always seem concerned about other issues like alienating reporters.
     
  10. Ember

    Ember Senior Member

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  11. urbantravels

    urbantravels disjecta membra

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    That about.com link leads me to an article about food.

    The abcnews.go.com link is just a reprint of the Medpage article...which is so garbled, it needs a serious rewrite in numerous places, besides apparently completely misreporting the proposed name change.
     
  12. Ember

    Ember Senior Member

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  13. urbantravels

    urbantravels disjecta membra

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    That link is also the same Medpage story. It's been run through a translator and back again to populate a "splog," or spam blog. This is a common practice for blogs that produce no original content, to evade copyright protections by changing the wording of the original story slightly.
     
  14. Mark

    Mark Former CEO

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    Big thanks for this lansbergen. This is some of the most crucial data I've seen - on the most important hot question of all. It requires very close analysis and some attention to detail - I would want to analyse the detail of all the positive and negative papers and see if they fit in with these findings. Credit to the researchers for being the first, to my knowledge, to actual explore these issues and publish their findings. Let's hope for more of the same in the near future.
     
  15. Sasha

    Sasha Fine, thank you

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    This is v. interesting - the science is over my head but I get the gist that the researcher thinks they've got important insights into why results might be disparate across different labs - does it deserve its own new thread so more people can see it?
     
  16. Mark

    Mark Former CEO

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    Yes definitely, can somebody do that please? "Necessary Conditions for PCR detection of XMRV"?
     
  17. The Phantom

    The Phantom Member

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    Just wondering

    Does anybody know how to check if there was press release from the CFSAC and, if so, what it said? My experience with the CFSAC is that they tend to alter words slightly to make the message more in tune with what the administrators want rather than what the Committee members intended. I wouldn't be at all surprised if a press release went out that said CFS/ME "by mistake". Oh whoops, we got it wrong, so sorry. If you know what I mean. :(
     
  18. Francelle

    Francelle Senior Member

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    I agree this is very specific research on detecting XMRV in Prostate tissue. Altho' I cannot see it in the quote, I am assuming they mean tissue from people with Prostate cancer as they keep referring to patients rather than subjects or cohort.

    A look at the method in all the other studies may be sufficient to elicit whether enough tissue material was used in each of them. I guess this is where science eventually uncovers fact from fiction.
     
  19. LaurieM

    LaurieM

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    The following article shows the name under consideration being ME/CFS:

    http://www.prohealth.com/me-cfs/library/showarticle.cfm?libid=15670

    Interestingly this refers back to the medpage article that now seems to have also changed the name to ME/CFS:

    http://www.medpagetoday.com/InfectiousDisease/GeneralInfectiousDisease/22756

    A move in the right direction for those in the US, but what I find disturbing is that in many cases the UK media is slowly changing the name from ME to ME/CFS to CFS/ME and now just to CFS. I didn't even know that CFS was a listed disease in the UK! - The Government still refer to it as ME, as do all of the UK's Support groups. However the NHS are beginning to use the term CFS more!
    The BBC Health site used to call it ME, but it now diverts you to a page called CFS.
    Who is responsible for this stealth name changing in the UK?
     
  20. Francelle

    Francelle Senior Member

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    Regarding the name: methinks it would be a pity if they used - CFSME rather than MECFS. It would be a retrograde step if the opportunity really existed to change it!
     

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