I do not have further info. I was simply commenting that Walitt's presence is of huge concern to the community.
@Kati - (my bad) I wasn't trying to put you on the spot. My question about additional info was to anyone/everyone who may have info.
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I do not have further info. I was simply commenting that Walitt's presence is of huge concern to the community.
I think that's an important point. The study is small in any case - particularly when you consider how many diff measures they are making-hundreds, at least). So I don't get the logic of 20:20:20 controls groups: with samples that small it would be hard to get a statistically significant results that, say, mecfs patients were different from healthy controls but not from post-Lyme controls. (Even a big difference may well end up a not statistically significant).I'd like to see the Lyme group gone too. More than one control group makes me nervous, for reasons of statistical power.
I'm not sure that's quite right. Presumably there could well be a difference between people who had glandular fever/mono due to EBV, and recovered - and those that carry EBV but never developed the illness.But since EBV and HHV6 are incredibly common, almost everyone in the population is asymptomatic carriers so people who have recovered from them are basically just healthy controls
I wondered too if Lyme was just a hot topic (the blog by Francis Collins was interesting, and reported that the asymptomatic recovered Lyme patients had gene expression patterns that were much more similar to chronic cases than they were to healthy controls).I suspect they may have added the Lyme group because of the similarities described at Lyme Disease: Gene Signatures May Catch the Infection Sooner | NIH Director's Blog
I don't think you are.Oh @viggster, I meant *only* healthy controls, for clarity.
What is the purpose of having recovered Lyme patients as a control group?
I know several recovered (formerly severely ill) Lyme patients as well. I hope you didn't take my post (or this one) as antagonistic.
I'm all for this study, and for it being the best it can be. I know emotions have run high here, and you don't know me. Ask @searcher, I'm not the enemy here.
I'm not sure that's quite right. Presumably there could well be a difference between people who had glandular fever/mono due to EBV, and recovered - and those that carry EBV but never developed the illness.
I wondered too if Lyme was just a hot topic (the blog by Francis Collins was interesting, and reported that the asymptomatic recovered Lyme patients had gene expression patterns that were much more similar to chronic case than they were to healthy controls).
I don't understand why people keep talking about chronic Lyme patients. There are no chronic Lyme patients in the study. If someone has symptoms from Lyme, they will not be in the study.
Perhaps it's a case of trial design by committee. Everyone wants to influence the study and wants their favourite interest included in the study.I think that's an important point. The study is small in any case - particularly when you consider how many diff measures they are making hundreds, at least). So I don't get the logic of 20:20:20 controls groups: with samples that small it would be hard to get a statistically significant results that, say, mecfs patients were different from healthy controls but not from post-Lyme controls. (Even a big difference may well end up a not statistically significant).
Would be good to know see an analysis plan/power calculaiton for the study, or at least understand the rationale.
Lyme comes with its own set of controversies regarding diagnosis, treatment, case definition, etc. The IDSA vs ILADS fiasco is not over. Recommended laboratories, what is the definite test that ascertains that this was really a case of Lyme, or not, and clinically very difficult to discriminate between a ME pt vs Lyme pt are all factors which will muddy the waters further.I still don't understand the objections to the post-Lyme control group, despite trying hard to understand.
People say that it's a murky control, but if someone doesn't have symptoms and says they've recovered then that seems straight-forward to me. (Assuming the participants are actually asymptomatic.) The study will be comparing a post-infection group with symptoms (ME patients) to a post-infection group at risk of symptoms but without symptoms (post-Lyme). The essential factor is the presence or lack of symptoms.
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. Even with a simmering infection, the post-Lyme patients are still asymptomatic so I don't understand that argument.
Every time I think it through I come to the same conclusion that its a helpful control. I realise that I'm in a minority of one or two people here!
I still don't understand the objections to the post-Lyme control group, and I'm trying to understand.
Thanks for your thoughts.Lyme comes with its own set of controversies regarding diagnosis, treatment, case definition, etc. The IDSA vs ILADS fiasco is not over. Recommended laboratories, what is the definite test that ascertains that this was really a case of Lyme, or not, and clinically very difficult to discriminate between a ME pt vs Lyme pt are all factors which will muddy the waters further.
Considering that the likelihood that me patients are heterogenous is high, let's not muddy the waters further.
My point is that Lyme is not a well accepted disease. Ask any IDSA infectious disease dr. Ask any hospital dr to see if they consider Lyme as a differential diagnosis for any patient for whom they are not sure of their diagnosis. At least here in Canada, it is not mainstream. Igenex testing is not recommended (too many false positive, apparently).Thanks for your thoughts.
It's the muddy waters argument again, but when I analyse all of the issues in turn, they all seem irrelevant to me.
The issue of whether a patient had Lyme or not won't be an issue if they're using officially recognised tests.
Treatment is irrelevant: only the outcome matters.
Case definition is irrelevant: either they were infected or they weren't.
The issue of recommended laboratories is irrelevant because they'll be using officially recognised test results.
And the argument re the inability to discriminate between Lyme patients and ME patients seems like an argument in favour of the post-Lyme cohort. (They may be comparing the same types of people but with/without symptoms which is an absolutely perfect control!)
Thanks for your thoughts.As I see it, the issue is that, assuming patient selection is perfect (something I'm not sure is necessarily reasonable), you're comparing two separate disease processes -- ME to Lyme -- and little is known concretely about either. As others mentioned, why not compare other infections, if there is value in that approach. Or, alternatively, why not find twenty people that had post-infectious ME that recovered, because at least you would be comparing the same disease? If you can't find any such patients, wouldn't that then say something about the value of trying to make a comparison with another disease? These are just my loose thoughts. It seems like a poor choice that introduces extra variables with little obvious potential for gain.
Dr Bell returned to his original cohort of young patient who contracted ME from an epidemic. Many of them considered themselved recovered. But interestingly, Dr Bell found that they had adapted their lifestyle to their disease and they were nowhere near recovered. Many did not have fulltime employment. Others could not sustain a normal social life. And so on.You know what would make more sense than a control group of "recovered" Lyme patients?
A control group of "recovered" ME/CFS patients.
I'm talking about people who were once diagnosed with CCC/ICC consistent ME/CFS but then became asymptomatic, or at least very, very close to asymptomatic. In his interview following the Grand Rounds at the NIH, Dr. Komaroff said that 5%-10% of people with ME/CFS "return to what they feel is a fully normal state", although he also said that a "substantial fraction" will have a relapse. This kind of "recovery" is also most likely in the first five years, which is consistent with the kind of ME patients they are recruiting.
It seems to me that finding the differences between ME patients who had become asymptomatic and those with ongoing ME would be more valuable to than comparing ongoing ME patients to asymptomatic Lyme patients.
This comparison might be especially useful if the asymptomatic ME patients were also found to be different from both ongoing patients and controls. It might narrow down the pathways that are causing the symptoms.
It's an interesting idea, but it would be too controversial to be accepted by the community: People would say that ME patients don't recover; And, if they do recover, then they didn't have ME.It seems to me that finding the differences between ME patients who had become asymptomatic and those with ongoing ME would be more valuable to than comparing ongoing ME patients to asymptomatic Lyme patients.
I think a positive rest result with an officially sanctioned/recognised company is widely accepted to be true? And that's the only result that seems relevant to this study. That's the test result that will allow participation in the study."The issue of whether a patient had Lyme or not won't be an issue if they're using officially recognised tests."
Are there unequivocal Lyme tests that for current and or past infection? (I thought one of the big problems with Lyme was the difficulty in diagnosing.)