NIH intramural research program update

[Bob]

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).

My view here is that well defined viral onset ME needs to be studies here, and that should they introduce another patient population as control, then a non-controversial, well defined disease population needs to be used, or none at all. (Multiple sclerosis, lupus, Sjogrens comes to mind)

I thought that Lyme disease is a clear-cut disease universally recognized including by the CDC.
Does Canada not recognise Lyme disease?
I understand that there may be many false negative diagnoses, but that's irrelevant for this study.
And I understand that it is thought some labs may give false-positive results, but that's also irrelevant.

 

[leela]

[Deleted because comment based on misreading of poster's comment]

 

[Denise]

I don't remember what the initial (accidental) protocol said about whether those who had Lyme were recovered Chronic Lyme patients or people who had had a short bout with Lyme and recovered.
I wonder how much of a difference there is in those two groups....

 

[Forbin]

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.

Yeah, I'm aware of that attitude. It is not an assumption that I would want to bet the farm on.

People don't seem to have a problem with the idea of patients recovering via rituximab. I'm pretty sure that some people experience spontaneous recovery, or at least long term remission, from some autoimmune diseases.

 

[Kati]

I thought that Lyme disease is a clear-cut disease universally recognized including by the CDC.
Does Canada not recognise Lyme disease?
I understand that there may be many false negative diagnoses, but that's irrelevant for this study.
And I understand that it is thought some labs may give false-positive results, but that's also irrelevant.

On a recent paper from a Vancouver team, patients with 'alternatively diagnosed (Igenex) chronic Lyme disease' have been deemed to have ME and not chronic Lyme.
http://www.ncbi.nlm.nih.gov/pubmed/26082507

 

[duncan]

Part of the problem rests in the name "Lyme." I think they are only promising that an asymptomatic Lyme patient likely had Lyme that was/is sensu stricto strain 31. They will not, I think, vouch for any other strains, certainly not any other species. Borrelia Miyamotoi anyone?

How long have these patients been symptom free?

I think you have to ask why they are equivocating. Are they willing to say cured or not?

Even if they are, can they guarantee the patient also doesn't have a different Borrelia species and actually is merely asymptomatic? I do not believe they can or will.

Why is that important? Because these are supposed to be post-infectious controls. If they are NOT post-infectious, if active infections are at play, merely dark at the moment, then a lot of the embedded comparative assumptions must be abandoned.

 

[Bob]

I think you have to ask why they are equivocating. Are they willing to say cured or not?

As I said earlier, I think it's irrelevant whether a Lyme patient is cured or not. The essential factor is that they are asymptomatic. That's all we are interested in. It is thought by many that ME is infectious (a simmering infection), so it would be interesting comparing a simmering ME infection (symptomatic) with a simmering but asymptomatic Lyme infection patient. That might give us some interesting results. Why wouldn't that be an interesting comparison?

 

[duncan]

At the very least, because it lacks certitude. Are patients in the control infectious or not?

I should think this is important to know.

Whatever the control group, it needs to be accurately represented and characterized.

Why on Earth would we trust any researchers who could not make these assurances?

 

[Bob]

On a recent paper from a Vancouver team, patients with 'alternatively diagnosed (Igenex) chronic Lyme disease' have been deemed to have ME and not chronic Lyme.
http://www.ncbi.nlm.nih.gov/pubmed/26082507

Thanks but, to me, that's not important to the study because the Lyme patients will have had an accredited test. And if a Lyme patient is wrongly diagnosed with ME then that's an issue whatever control is used.
The crucial aspect of the study is comparing symptomatic patients (ME) with non-symptomatic (post-Lyme).

 

[duncan]

Let them guarantee these Lyme patients are post-Borrelia. If they are not sure, then let them say that. Also TBD-free.

I do not think this is asking too much.

 

[Bob]

At the very least, because it lacks certitude. Are patients in the control infectious or not?

The patients are not infectious according to the recognised/accredited tests. If you want to use non-accredited tests then you have to use the same standards for the ME patients and the healthy controls for the same reason. i.e. healthy controls or ME patients may have unrecognised infections that would test positive on various tests.

 

[duncan]

@Bob, with all due respect, if we are talking ELISA and WB and PCR, then it boils down to smoke and mirrors - and odds.

Look, they should be willing to say what I've requested if they know those asymptomatic controls are Borrelia-free.

 

[Kati]

The patients are not infectious according to the recognised/accredited tests. If you want to use non-accredited tests then you have to use the same standards for the ME patients and the healthy controls for the same reason. i.e. healthy controls or ME patients may have unrecognised infections that would test positive on various tests.

Let them put our blood in mice and see what happens.

 

[Bob]

Let them guarantee these Lyme patients are post-Borrelia.

I'm only interested in why they are asymptomatic. If they are infectious but asymptomatic, then lets find out why. If ME patients are infectious but symptomatic let's find out why. Let's compare the groups to find out why one group has nasty symptoms but the other doesn't, regardless of the testing issues. I think you may be over-complicating things and missing the point of the control. (Just my opinion, and I may change my mind if anyone can convince me.)

 

[Bob]

Let them put our blood in mice and see what happens.

Did you know that's part of the study?

 

[duncan]

@Bob, this is not what they are saying. That bothers me. I think it may bother others. Accuracy needs to matter, especially out of the starting gate.

If they have been inaccurate, might this not speak to credibility?

 

[Bob]

Look, they should be willing to say what I've requested if they know those asymptomatic controls are Borrelia-free.

They will say categorically that the controls are infection free, but you may not agree with them.

 

[duncan]

Have they said categorically the controls are infection free??

 

[Bob]

@Bob, this is not what they are saying. That bothers me. I think it may bother others. Accuracy needs to matter, especially out of the starting gate.

If they have been inaccurate, might this not speak to credibility?

But you are holding them to different standards for the different control groups so you're not being consistent. You want 'alternative' tests for the Lyme group but not the healthy controls or ME patients. They are being consistent.

 

[duncan]

I don't want alternative tests. I think all participants should be subject to the same qualifying tests, and these should be exhaustive.