Bob
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I can't remember, but we haven't seen the study design yet.Have they said categorically the controls are infection free??
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I can't remember, but we haven't seen the study design yet.Have they said categorically the controls are infection free??
Oh, I thought you were advocating for tests that aren't recognized by the CDC. So you're advocating that they use only CDC-approved tests?I don't want alternative tests. I think all participants should be subject to the same qualifying tests, and these should be exhaustive.
It seems simple to me: They are asymptomatic, with unknown levels of latent infection, which is exactly the same as the healthy control group. If either control group (healthies or Lyme) have an undetectable infection and are asymptomatic, then so much the better. I want to know why they are asymptomatic.Look, @Bob, they cannot accurately guarantee what I am asking. This is one reason why a Lyme control group might prove very bad for the study. There are simply too many question marks and unresolved controversies.
Look, you're saying that there are 'unknowns' with regards to Lyme, and I'm saying that (in my opinion) the 'unknowns' are not important, and that the same 'unknowns' apply to the healthy control group.You show me where the NIH states that is their premise.
That's something that I wasn't aware of. No one has mentioned it before. If that is common then I can see that could be a problem. But, even so, either the patient is asymptomatic or unwell during the study.Secondly, you need to appreciate the relapsing remitting quality of some Borrelia. Some other TBD's too. What might be latent or stealth today can be full-blown in three months. So in effect, it's an active infection in some cases, potentially. Wouldn't that impact how that control is contrasted and compared with ME/CFS patients?
I think they are saying that there is no detectable infection in ME patients, healthy controls, or post-Lyme controls.Don't they need to say up front that we are dealing with immune responses that are mediated or not by infection? Isn't this basic science?
Their premise is straight-forward. But you don't agree with their methodology.Don't we need a concrete premise with concrete variables to evolve and test a hypothesis?
You want them to use different standards for the different groups, and I question if that is reasonable. They have to use the same standards across the groups. How can you guarantee that the ME patients are infection free? The post-Lyme patients are asymptomatic, which is the key to the study. It's the thing that makes the group very special in my opinion, whether infected or infection free. Why is there a problem comparing Lyme patients with ME patients? I still don't get it. I want them compared. Why don't you want them compared? Bring on the unknowns, as far as I'm concerned. In fact that's what this study is investigating: the unknowns.@Bob, if they say a control group is infection-free, and that is a key premise, and that control group is not infection-free, then the study might be askew from the get-go. Perhaps more importantly, they arguably have demonstrated a disconcerting credibility gap.
I do not know if it's been done before as i do not follow Lyme research, but have they compared chronic Lyme atients (the symptomatics) to the 'cured Lyme patients' (asymptomatics)? And if not, would that not be the first steps?You want them to use different standards for the different groups, and I question if that is reasonable. They have to use the same standards across the groups. How can you guarantee that the ME patients are infection free? The post-Lyme patients are asymptomatic, which is the key to the study. It's the thing that makes the group very special in my opinion, whether infected or infection free. Why is there a problem comparing Lyme patients with ME patients? I still don't get it. I want them compared. Why don't you want them compared? Bring on the unknowns, as far as I'm concerned. In fact that's what this study is investigating: the unknowns.
My main objection is that they weaken the statistical power of the study. A few of the dodgier investigators have engaged in such behavior before, using multiple control groups. The result is that there needs to be a huge difference in a lab result between the patients and a control group for it to have statistic significance. Anything more nuanced or representing a subgroup is completely lost. And depending on the ethics of those investigators, they will gloss over the lack of power and present the study as a straight-forward null result. I do not want them to have the opportunity to do that again.I still don't understand the objections to the post-Lyme control group, despite trying hard to understand.
Except that you don't come closer to getting an answer in the case of ME by introducing a similar mystery in the form of Lyme. It would be better to have people who recovered completely from post-viral fatigue after 6 months due to EBV, and now have normal EBV titers.A reason given against the post-Lyme control is that the bacterial infection might still be present but simmering, but the same could be said for ME (that an infection is simmering) so that seems perfect to me.
The official tests have a huge false negative rate. That's part of the reason they make a crappy control group. Are they asymptomatic and cured, or asymptomatic with the bacteria still hiding out somewhere? We need to know, if we're going to use them as a basis for interpreting results from ME patients. And the state of Lyme testing is not sufficient to provide any definitive answers.The issue of whether a patient had Lyme or not won't be an issue if they're using officially recognised tests.
It's unlikely that none of them ever had co-infections. Maybe the Lyme antibiotics wiped them out as well, but maybe not.The post-Lyme patients are healthy controls but a more homogeneous cohort than the standard healthy control because they've all had the same infection
But most are not post-post-viral fatigue from EBV. Or post-Q-fever.And nearly all the population is post-mono or post-herpes.
No, it isn't. They tested positive at some point, but due to inaccuracy of all testing methods, it cannot be guaranteed that they are negative now. All that is known is that they were firmly diagnosed with Lyme at some point, and they were treated. Beyond that, all we can do is guess if the infection was cleared, and no others were present.I understand that there may be many false negative diagnoses, but that's irrelevant for this study.
That's a completely different trial. The purpose of this trial is to answer questions about ME. The very existence of questions about the Lyme group should be a very strong indication that they are not suitable controls.I'm only interested in why they are asymptomatic. If they are infectious but asymptomatic, then lets find out why.
Again, because the purpose of a control group is to control for variables. A control group should not be capable of doing anything unexpected.I acknowledge that there are 'unknowns' in relation to the post-Lyme group but I can't understand why 'unknowns' necessarily make a control group inappropriate. Unknown factors might give us completely unexpected answers.