Some lucid and humane commentary here.
http://www.huffingtonpost.com/david-katz-md/your-syndromes-missing-benefit_b_6815588.html
http://www.huffingtonpost.com/david-katz-md/your-syndromes-missing-benefit_b_6815588.html
David Katz on "syndromes" and the IOM report
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He would have to use post-acute Lyme as an example of a syndrome, thereby strengthening the IDSA myth. Sigh.
But there is a lot of merit to most of the rest of the article, both in tone and content.
So I suppose I can forgive him the blatant and unforgivable Lyme gaffe. Maybe.
But there is a lot of merit to most of the rest of the article, both in tone and content.
So I suppose I can forgive him the blatant and unforgivable Lyme gaffe. Maybe.
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alex3619
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Even ME is a syndrome in how it is treated until we have a recognized proven cause/s. So is SEID. What is missing here is that a syndrome in cases like this is probably composed of one or more diseases. Its the "or more" that is really the question. Until the science is fully nailed down there is no certainty.
It is also still an open question as to whether or not these kinds of disease groups are overlapping or on a spectrum. For example, what if chronic Lyme, fibro and ME or SEID are the same disease with different manifestations due to different triggering agents or some other factor like genetics in addition to triggers?
This does not mean that pathogens should not get treated. That is a treatment issue - what good is treating the ME or fibro or chronic Lyme if the pathogen is still there? Treatment must address pathogens. The medical world has a hard time dealing with non-acute infections though. To some you might as well be talking about ghosts and goblins and pixies.
It is also still an open question as to whether or not these kinds of disease groups are overlapping or on a spectrum. For example, what if chronic Lyme, fibro and ME or SEID are the same disease with different manifestations due to different triggering agents or some other factor like genetics in addition to triggers?
This does not mean that pathogens should not get treated. That is a treatment issue - what good is treating the ME or fibro or chronic Lyme if the pathogen is still there? Treatment must address pathogens. The medical world has a hard time dealing with non-acute infections though. To some you might as well be talking about ghosts and goblins and pixies.
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He would have to use post-acute Lyme as an example of a syndrome, thereby strengthening the IDSA myth. Sigh.
But there is a lot of merit to most of the rest of the article, both in tone and content.
So I suppose I can forgive him the blatant and unforgivable Lyme gaffe. Maybe.
The article is not talking about "chronic lyme" but the symptoms that linger after an initial lyme infection, which is different. At this time medical science can't definitively say if these later symptoms are from an active infection, something else such as a downstream effect or even reinfection. Nor do we have accurate tests for lyme. These statements are not a myth. They are facts We just don't know.
So that does indeed fit the definition of a syndrome. The two are sometimes used interchangeably or incorrectly such as AIDS which started out as a syndrome but once the cause was found, it technically wasn't. But the name stuck and it would be too confusing at this late date to change it. Perhaps, now that we know the cause it's not that important of a point.
Unfortunately syndromes are often dismissed, and that's a shame, but it's still important that the two remain distinct because of the clinical implications.
I don't see this as a gaffe.
Barb
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barbc56, trying to discuss chronic Lyme without fully understanding its twisted history, in particular its political history, is similar in many regards to trying to understand ME/CFS as a moment in time - like a snapshot - without its tumultuous history and all its associated political baggage.
The result of such a course is likely to leave an individual without a comprehensive appreciation of what ME/CFS is all about, in terms of the disease, its sufferers, and the political dynamics which have kept progress more or less in check these past three decades.
The same error would likely ensue for people trying to fathom Lyme amid all its behind-the-scenes craziness.
Although you are correct when you say that apparently Science cannot at this time state definitively that post treatment symptoms are caused by Lyme, Science also cannot say they aren't. The reason for that is that outside of the bulls eye rash, there is no reliable way for direct testing; testing is indirect, and therefore subject to whimsical calibrations and contentious interpretations.
In fact, I'm sure you are aware that there are two opposing schools of interpretation of post treatment persistence. One claims Borrelia IS still present, the other, it isn't. ILADS believes there is ample evidence of continued infection, and if recommended treatment doesn't work, that means treatment hasn't been successful in ridding the host of its infection. The IDSA believes recommended treatment - ITS recommended treatment btw - is always adequate with only rare exceptions.
Both schools of thought have merit, both problems.
The article commits a gaffe in that it assumes the IDSA stance, which is the stance currently accepted by the CDC and the NIH, is correct. But it does so at the expense of an entire school of clinicians and researchers, and literally tens of thousands of patients, who believe Science clearly suggests that chronic Lyme is active Lyme that persists due to inadequate treatment. Accordingly, subscribers to this latter theory think it's incorrect to categorize continuing debilitating symptoms as a syndrome, when there is at least one known pathogen involved, and both its acute stage as well as its late stage are internationally recognized as the devolving trajectory of a disease with a global footprint.
The result of such a course is likely to leave an individual without a comprehensive appreciation of what ME/CFS is all about, in terms of the disease, its sufferers, and the political dynamics which have kept progress more or less in check these past three decades.
The same error would likely ensue for people trying to fathom Lyme amid all its behind-the-scenes craziness.
Although you are correct when you say that apparently Science cannot at this time state definitively that post treatment symptoms are caused by Lyme, Science also cannot say they aren't. The reason for that is that outside of the bulls eye rash, there is no reliable way for direct testing; testing is indirect, and therefore subject to whimsical calibrations and contentious interpretations.
In fact, I'm sure you are aware that there are two opposing schools of interpretation of post treatment persistence. One claims Borrelia IS still present, the other, it isn't. ILADS believes there is ample evidence of continued infection, and if recommended treatment doesn't work, that means treatment hasn't been successful in ridding the host of its infection. The IDSA believes recommended treatment - ITS recommended treatment btw - is always adequate with only rare exceptions.
Both schools of thought have merit, both problems.
The article commits a gaffe in that it assumes the IDSA stance, which is the stance currently accepted by the CDC and the NIH, is correct. But it does so at the expense of an entire school of clinicians and researchers, and literally tens of thousands of patients, who believe Science clearly suggests that chronic Lyme is active Lyme that persists due to inadequate treatment. Accordingly, subscribers to this latter theory think it's incorrect to categorize continuing debilitating symptoms as a syndrome, when there is at least one known pathogen involved, and both its acute stage as well as its late stage are internationally recognized as the devolving trajectory of a disease with a global footprint.
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I wasn't really debating Lyme but used it from your post as a jumping point to show the difference between syndrome and disease and how it has clinical as well as other implications. Perhaps I didn't expand on the latter as much as I intended as I ran out of steam.
Barb
ETA
Maybe my biases about Lyme did drive some of my response. I'm not sure as I wrote the post yesterday and with the way my mind works at times, it might as well been several years ago. But, yeah, I can see how it might have been misinterpreted.
Barb
ETA
Maybe my biases about Lyme did drive some of my response. I'm not sure as I wrote the post yesterday and with the way my mind works at times, it might as well been several years ago. But, yeah, I can see how it might have been misinterpreted.
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jimells
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David Katz said:
Say what?!?
SOC
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Well, there's our new name! Why didn't we think of that? Chronic Disease Syndrome (CDS) seems to fit, doesn't have any "you can't prove that symptom" problems, and is short and to the point. Vague enough to be a placeholder name without offending anyone.
arabella1234
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barbc56, trying to discuss chronic Lyme without fully understanding its twisted history, in particular its political history, is similar in many regards to trying to understand ME/CFS as a moment in time - like a snapshot - without its tumultuous history and all its associated political baggage.