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Should Patients Infected with Borrelia Burgdorferi No Longer Be Referred to as Having Lyme Disease?

Discussion in 'Health News and Research unrelated to ME/CFS' started by Dolphin, Jul 21, 2018.

  1. Dolphin

    Dolphin Senior Member (Voting Rights)

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  2. duncan

    duncan Senior Member (Voting Rights)

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    Notice the MUS reference.

    There is a federal Lyme working group that has been convening for the past few months. As I understand it, this individual was appointed to it, and the patient outcry against his mere presence was swift and loud. He withdrew from the Lyme working group.
     
    Last edited: Jul 21, 2018
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  3. Esther12

    Esther12 Senior Member (Voting Rights)

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    Reads like a jokey piece, using a potential argument for an absurd outcome to illustrate just what a mess things have become. "That I would even consider arguing that patients infected with borrelia should no longer be referred to as having lyme disease shows how distorted the popular conception of Lyme disease has become."

    The sentence that stood out to me was the one that lacked a supporting reference: "Looking at chronic fatigue syndrome from a historical perspective, it is clear that there has been intense interest in identifying the etiology (or etiologies)."

    People may have different views about what 'intense interest' means, but if you look at levels of research funding compared to disease burned then interest appears less than 'intense'.
     
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  4. Dolphin

    Dolphin Senior Member (Voting Rights)

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    There is good evidence from numerous studies that a percentage of people who had Epstein-Barr virus go on to develop CFS. Similar findings have been found with quite a number of other infections though there probably hasn't been as much replication as with Epstein-Barr virus.
     
    Last edited: Jul 21, 2018
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  5. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Yes, I think Dr Wormser could do with boning up a bit on the science. On the other hand he may be right that a diagnosis of chronic borrelia infection or probable or possible chronic borrelia infection is of more use than using 'Lyme disease' to describe a syndrome pretty much like ME but with some evidence of borrelia infection at some point.
     
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  6. duncan

    duncan Senior Member (Voting Rights)

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    I'm not sure what this means. Lyme disease is an infection of Bb - period.

    I think there are many Lyme patients, myself included, that would prefer a diagnosis of Borrelia. This is not too different from many ME/CFS patients wishing their diagnosis was simply ME.

    Regardless, with at least one estimate putting the burden of US chronic Bb cases at $75 Billion, this is clearly a situation where word-games miss the point.
     
    Last edited: Jul 21, 2018
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  7. duncan

    duncan Senior Member (Voting Rights)

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    "However, chronic fatigue syndrome and medically unexplained subjective symptoms are now increasingly referred to as Lyme disease..."

    I doubt this is as prevalent as he might be implying. Most doctors I know use variations of the CDC's silly 2T or the C6. They dutifully check serology. This is imo just mythologizing as is want with his ilk.
     
  8. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    The point on which Wormser and I would agree is that it is completely different. Neither the general public nor most doctors realise that if you use the same term for cause and for effect you end up with scientific nonsense. Huge research programmes are devoted to garbage. A good example is 'osteoarthritis' which is used both as a syndrome and a cause of that syndrome. Many millions have been poured down the drain on 'animal models' of a meaningless concept.

    Lyme arthritis was originally a syndrome. Then Lyme disease became the cause of the syndrome. Now we have another syndrome that is thought to have the same cause. This bears no relation to ME, which remains a syndrome.
     
  9. duncan

    duncan Senior Member (Voting Rights)

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    All of which, I suspect, is incidental to what Wormser is trying to do - which I imagine includes saving foolish patients who only think they are sick, when in reality they are just experiencing commonplace aches and pains.

    Fortunate for us that he has evidence-based medicine on his side to offset our banalities.
     
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