I didn't care for them stating that they found XMRV in 95% of patients. The science study only found 67%, so they are quoting post study results which were not published. Also, they focused only on few symptoms and didn't say anything about other infections that could be present in cfs people. But overal i thought it wasn't that bad...
Hi. Well really the % rates don't matter, because you either test positive or you don't. It's the accuracy that matters, and they've already said the new test coming out has very high specifity. It's impossible we'd all test positive for XMRV in droves, because we're all unexplained sick people - so the cause could be anything.
It's a reality thay many people on this forum and the world (including me) may well be dissapointed in 2010, that they never did have neuro immune disease, and were told wrong. Naturally these people won't test positive for XMRV, and then can chose other avenues of help.
The 67% detection rate was their first test used in early 2009 (used in SCIENCE) that isn't
going to be the final test that health agencies will use - so why refer to it?.
If a preliminary test for diabetes only had a 67% detection rate, and since then I refined it and got a test out for diabetes that anyone can use around the world, (as the antibody test for XMRV will be) then I'd not refer to the previous less accurate one. This is all they did here.
Currently on a research basis, VIPdx/WPI are offering the lower detection rate test (effectively old technology), insurance companies and doctors offices won't be using this test as 'proof' of neuro immune diease, they will wait for the finalised clinically validated test in 2010 - the antibody test, which is running at 95%. Hence they mentioned the 95%. Makes perfect sense. We are all hobbyists on here effectively, having to be our own doctors. Doctors will ignore the XMRV test until it's 'official', it's not yet the antibody test is not available. It's pointless the WPI/VIPdx linked people refer to 67% as that's not going to to be the test the general public have to prove XMRV and XAND.
The refined version that is more sensitive and uses a different method of detection (antibodies) will be the final test with a higher detection rate.
It's only logical that they explain that they now have a diagnostic test for this disease, and can finally seperate explained neuro immune disease, from unexplained CFS.
(It's like saying in January I scored 67% in a math examination, and now with tutoring in September I can get 90%. If someone said what scores can you get in math, you'd not refer to 67%, but the latest ability you have. That's not a problem). Especially if examinations take place after September.
95% is the latest ability they have, the public just don't have access to it yet - but will do in 2010.
Everyone benefits, including the people without XMRV.
They can carry on doing what they do, and the people with brain damage and cellular damage can go see a doctor and try not to die of cancer/heart failure. That's win/win situation.
Everyone benefits, it's incredible to me that misdiagnosed patients (including me) may be told they no longer have ME/CFS, but a new human retrovirus. Quite amazing.
If you're XMRV+ and ME/CFS is not announced as an infectious disease - then you don't have ME/CFS but an XMRV infection, and that is wonderful news.
Even if the detection rate of CFS patients testsed was 0.1% it's wonderful news, because then you have evidence of an inflammatory immune supressive state in your body, and can get help.
It's the specifity that matters (accuracy), and they've got it very high indeed.