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New Scientist: Chronic Lyme disease may be a misdiagnosis of chronic fatigue syndrome

Discussion in 'General ME/CFS News' started by Kalliope, Oct 9, 2019.

  1. Dolphin

    Dolphin Senior Member (Voting Rights)

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    I'm not sure many people looked at the video. This is the bit I wanted to highlight:
    Lyme testing.JPG
    These figures are for Canada rather than the US.
     
  2. Andy

    Andy Committee Member & Outreach

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    https://engineering.columbia.edu/press-releases/sam-sia-lyme-disease-test
     
  3. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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  4. duncan

    duncan Senior Member (Voting Rights)

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    Yep.

    Although, you do have the IgM vs IgG thing.

    There's other stuff, too.

    But look at the proteins. I'd like to know each one selected. Look at timing in terms of the test's efficacy (1 day after the bite? 1 week? A month? 10 years?). Look at S/S efficiency by stage, and how they calculate that. Claiming to be able to qualify the stage would be monumental, if true. Now, we are limited to IgM/IgG, which is sloppy and unreliable thanks to antigenic variation.

    IMHO
     
    Last edited: Oct 12, 2019
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  5. richie

    richie Established Member (Voting Rights)

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    If Me is as you describe, that does no an any imply that there are not sufferers from long term infections who may overlap considerably with ME. Lyme may be such an infection in which case post Lyme might on your definition be called (an) ME and ongoing Lyme - Lyme.

    The issue of who has what remains unresloved becaue
     
  6. richie

    richie Established Member (Voting Rights)

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    1) Lyme is known as a cause of actual encephalomyelitis and myalgia.
    2) In the old days CFS sufferers were said to want CFS/ME, or ME diagnosis in order to avoid diagnosis and stigma of mental illness. We were afraid of "stigma". What we were really afraid of was inappropriate treatment. CFS/ME had a stigma all of its own.
    2) Apparently SMC now recognises that CFS itself has a stigma and proposes we are now afraid of stigma of CFS, choosing Lyme instead. Is this because SMC have changed their minds or because they have successfully got all and sundry to believe CFS/ME is mental , or (more likely) is this a subtle means of insinuating the propaganda that CFS is mental, as it has a stigma, and being nice chaps and chappesses we must save the mentally ill from stigma (and from themselves and Germans and possibly even some Scots - moors up there, more Lyme than in Surbiton, maybe off message).
    Furthermore if disputed Lyme can at an early stage of debate, if not an early stage of neuroborreolosis), be equated with CFS and CFS equated with mental, then that's a few birds with one stone.

    There's snake oil, sure. But then there are snakes........
     
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  7. Dolphin

    Dolphin Senior Member (Voting Rights)

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  8. duncan

    duncan Senior Member (Voting Rights)

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    Not sure how this would pertain to legitimate Lyme patients and the efforts to diagnose and treat them by legitimate infectious disease doctors...
     
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  9. Dolphin

    Dolphin Senior Member (Voting Rights)

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    It suggests there may be false positives with the labs.

    It doesn't take away from people who have genuine Lyme, but is relevant to the issue of whether there may be people who are falsely diagnosed, which seems relevant to this thread.
     
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  10. duncan

    duncan Senior Member (Voting Rights)

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    There are false positives and false negatives, regardless of the labs. Get tested at the NIH or NHS and it will hold true that x percent will be wrong results. Moreover, in general I'd wager there are far more false negatives - if only because most clinicians test when they see an attached tick, and that's too soon, and many times can result in a false negative.

    To me, if only one half of the problem is outlined, readers may infer that is the sole problem. Which, of course, we know it isn't. :)
     
  11. Dolphin

    Dolphin Senior Member (Voting Rights)

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    In most of the people I know who previously believed they had ME or CFS and now believe they have Lyme disease, the test was done years later. I get the impression many in Great Britain and Ireland don't even remember any tick bites. I remember one woman who collected tens of thousands for treatment abroad saying on TV she must have got it when she was on a particular cycle race through a "foresty" area.
     
    Last edited: Oct 13, 2019
  12. Dolphin

    Dolphin Senior Member (Voting Rights)

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    I have to say I find it frustrating that I'm being criticised for posting this message. I don't think individual posts on a thread should be required to deal with all sides of an issue. I never claimed it pertained to legitimate Lyme patients and the efforts to diagnose and treat them with legitimate infectious disease doctors.
     
  13. Milo

    Milo Senior Member (Voting Rights)

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    Armin lab test is (was) considered the holy grail of test for Lyme though. And then these 4 journalists, healthy, submitted their blood for Lyme and they all tested positive. How much does it cost to get tested and one wonder why countries with socialized medicine do not cover these private labs tests? It’s because they are not reliable and/or not validated.

    I have learnt to get concerned when desperate patients pay hundreds if not thousands of dollars for labs that are not covered by their health care system. The latest has been the Myhill test.

    There is a market for desperate people.
     
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  14. duncan

    duncan Senior Member (Voting Rights)

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    No, it is not.
     
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  15. duncan

    duncan Senior Member (Voting Rights)

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    Agreed.
     
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  16. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Many people in the thread and elsewhere on the internet have been quick to dismiss the claims in the original posts that many people in the UK diagnosed as having Lyme Disease probably don't have the condition, but simply have CFS or ME. People can quite naturally be somewhat suspicious of the Science Media Centre. Also people can like the idea of biomedical treatments. However, just because the Science Media Centre have said it doesn't mean it's wrong. I believe I have posted some useful information to this thread which suggests there could be some basis for the claim, information that might not have got posted if I didn't share it.
     
    Last edited by a moderator: Oct 13, 2019
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  17. Lucibee

    Lucibee Senior Member (Voting Rights)

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    Is it fair to say that it's not so much *what* the SMC had to say, but *how* they said it?

    This is an extremely difficult, fraught, complex area, and their unleashing of simplistic soundbites and clickbait into the media arena is supremely unhelpful, mainly because even the term "chronic lyme" can be interpreted in so many different ways, each one with its own baggage.

    I've been spending the past few days trying to understand what it all means. I've read articles such as this one from a skeptic who has moderated their view somewhat - https://sciencebasedmedicine.org/fake-diagnoses-not-fake-diseases/ - to the paper from Dryden, who proposes dropping the term entirely in favour of something that seems to miss the point (how can you call something an "arthropod-borne" condition if the dispute is whether it was even borne by an arthropod?).

    I've had a long convo online with someone who has clarified things immensely for me, but doesn't want to be quoted at all, so I'm effectively silenced. But this seems to be the climate we are all in.

    There needs to be a better way to discuss the uncertainties without getting bogged down. I think we're all on the same side here - in that there should be no sides!

    Am I making any sense, or am I just wittering uncontrollably (like usual)?
     
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  18. Patient4Life

    Patient4Life Senior Member (Voting Rights)

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  19. rvallee

    rvallee Senior Member (Voting Rights)

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    Very much so. That is my take as well. It's two fields loaded with uncertainty. To make such strong assertions is out of line. Especially as we know the kind of people the SMC consider to be experts are far from it. The SMC is quite willing to ignore such expert panels when it does not promote their position.

    We don't know. Nobody does. Those areas all suffer from the same chronic underfunding and baseless assertions from people who have no business making them. We should try to understand, to fund research with strategic planning, but such blanket statements make it all that much harder and it goes completely against the current psychologize all the things reform under way with IAPT.

    Frankly this looks opportunistically in line with the recent announcement by the NIH that they will launch a strategic plan to deal with the increase in tick-borne infections. We already know the SMC times its PR in such circumstances. It may not be, but they have a habit of doing that and when they do, the science is only there to provide support for the politics.
     
  20. rvallee

    rvallee Senior Member (Voting Rights)

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    The title is framed as if this were 100% validated as a result of solid research. Complete fail by the BBC.
     

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