Ah, ok, so you are waiting for them to come up with testing that satisfies you in terms of reliability before you are willing to believe any of these claims - that seems reasonable, but with the Lyme disease being as controversial as it is, I think you're going to have to wait a long time before there is any sort of consensus about whether tests are reliable or not. Or are you just looking for a particular test to be validated by two or more independent studies?
If it really was the case that there were reliable blood test for identifying the cause of a large percentage of CFS patient's health problems, then it would be easy to convincingly show this. If it was a sub-group that could be (roughly) identified clinically, and then have testing confirm the cause of the problem, that too should be able to be shown under blinded conditions.
The alternative Lyme thing has been going on for decades, without any good evidence emerging. When I first read about it, it all seemed plausible and reasonable... but there has been some positive evidence of problems with alternative approaches, and also, after so long I think it's fair to raise our standards from the lower ones we may have had for an entirely new approach that promised the hope of great things.
I do have problems with the tolerance for inflicting 'reassurance', etc within mainstream medicine, rather than just being honest about uncertainty, and I think that this can lead to patients feeling manipulated and unable to trust the doctors. One of the reasons why I'm concerned about these sort of things is that I think that they help push patients towards dodgy alternative doctors.
Not in australia, we have access to the worlds best, including DNA tests!
These are not alternative doctors here in Australia but recognised Medical practitioners!
I know of many personally myself, and if you are wondering I worked in a laboratory which did research for Warren and Marshall who won the Nobel Prize for work on H pylori. Plus I have some 40 years working with various bacteria, DNA tests etc
Then a new nobel prize will be heading in their direction soon.
Doesn't matter I suppose - you're wrong in any event. Papers show that the two-tier system is unreliable, and that at least one alternative test (LTT-Elispot) is much more reliable.
For past the initial infection? I know that there are problems with testing in the first weeks of illness.
I just googled that test and found a discussion here when Jonathan Edwards was sceptical of it's value:
http://forums.phoenixrising.me/index.php?threads/validity-of-elispot-ltt-lymes-test.35634/
Here's a thought -- rather than having the same arguments related to lyme testing over and over again on various threads which usually end in personal attacks, why not start a dedicated thread with a rule to keep all the personal comments out of it?
Provide the information/scientific evidence as it currently exists that might show the strengths and weaknesses of various lyme tests (there is some out there).
Provide information related to what makes tests reliable and valid and why certain tests are more valid and reliable than others.
Explain what CLIA certification means.
Something like this at least might be helpful to members who don't know much about lyme testing to make a decision about what test they might choose. It could also serve as a reference thread that could be linked to when a member refers to lyme testing.
There is no point tacking on personal insults when somebody provides information that you don't particularly agree with. Members, if presented with a thread re: the pros and cons of the tests and testing, might find that much more helpful than reading a bunch of senseless personal attacks.
Maybe it would be helpful to have an 'outsider' to the debate decide what questions about testing should be answered?
Also, a trouble is that there isn't much evidence to be had about a lot of the alternative testing that is being sold to patients. Not just stuff about validating the testing under blinded conditions, but also things like what % of the general population get classed as having Lyme according to IgeneX's (and other labs) testing? The alternative Lyme thing has been going on for ages, but we've got very little data out of it.
