1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
California Conference Season 2014: Stanford Presents - Advances in Clinical Care and Translation...
The 2014 conference season began yesterday at Stanford, home of Dr. Jose Montoya and his team, and searcher was there to provide a live commentary on the presentations from an all-star line-up of clinicians and scientists and which featured some exciting new developments on the...
Discuss the article on the Forums.

Should Vip Dx have any obligation to refund patients that were tested for XMRV?

Discussion in 'XMRV Testing, Treatment and Transmission' started by its ME Jeff, Dec 28, 2011.

  1. taniaaust1

    taniaaust1 Senior Member

    Messages:
    6,746
    Likes:
    3,325
    Sth Australia
    Quite a few of us warned members that the XMRV tests were experimentals, hence everyone here should of known. Im one of the many here who did that (and I was awaiting further proof before I was going to be tested, that risk with XMRV so unproven, was not acceptable to myself, thou I did believe at the time that it probably would end up being proven.. (Im not a huge risk taker thou).

    To me these things are like chalk and cheese. I had no quarms about paying for 23andME testing for myself.. why you would be wondering when I wouldnt get XMRV tested and going around warning people to maybe wait, at that point of time but feel fine with 23andME? It all comes down to ones own judgement call of a situation.. here's mine...

    1/ DNA testing as such isnt something which is disputed can happen, everyone knows there are genes which can be tested for. This isnt "new science" which is in dispute as such.

    2/ Ive heard of less issues with DNA testing then with other normal tests done which we all know that many tests can have quite inaccurate results or miss things. I have NEVER read of someone recieving a wrong DNA tests results.. its not a yes or no test where something can be missed unlike many other tests as but rather then actually reporting the genotypes of someone.

    3/ 23andME is well tried and true amoung our community. Lots of us have that test and lots of us can vertify things coming back on that test are correct from tests being done elsewhere. Point me to a post of anyone here in which the result they had on ANY of the 23andME posts later proved to be wrong? Many of us inlcuding myself, have had other tests done which confirm results we got in our 23andME results. Interestingly much of what came up for me precisely matches all the things which do in fact run in my family... I knew exactly what I'd inherited from where.

    4/ Results from 23andME whether its an inherited illness or whatever..can be checked by ones own doctor (unlike the xmrv saga). Things like MTHFR can be retested by ones own doctor. Hence if they were bad and making mistakes, Im sure people would be talking about it here as enough of us have had tests done. Due to that I have more faith in 23andME then I do with tests at the doctors in which some have later turned out to be wrong and missed things the first time, when redone by them.

    Anyway.. the above are just a few examples of why the 23andME test cant be compared well with what happened with XMRV. 23andME. It isnt really new science (most of it), they use the science of others and where anything it their own science which needs follow up, they do note it as prelimitory (sorry my spelling) which needs follow up by others.

    I am aware logically with all of the above that some things could turn out to be wrong as 23andME isnt approved as such .. but that being said, I feel like I know enough about that company and others experiences along with my own experience of it, to know that what Ive and others have got out of the test even if a few things were later shown to be wrong.. what i've got out of it still would be invaluable and I still would be glad I did that test.

    I only wish that test had been out in the beginning of my ME so I could of been tested for things sooner and found out about my MTHFR mutation earlier. My child wouldnt have been born badly disabled from the issue it causes with folate, if I'd known about this mutation before I got pregnant. 23andME would be doing much good by helping people be able to find out about these things and hopefully then prevent issues and that far outweighs even if it was found at times they've got something wrong (which there is nothing at all at this time to show that even happens).

    Anyway.. xmrv was a situation where people were blind.. you get your result and have nothing at all which can support. This isnt the case for 23andME..
    Last edited: Dec 23, 2013

See more popular forum discussions.

Share This Page