Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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"Joint hypermobility: emerging disease or illness behaviour?"

Discussion in 'Other Health News and Research' started by Kyla, Jun 5, 2015.

  1. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    http://www.clinmed.rcpjournal.org/content/13/Suppl_6/s50.full

    I had no idea that JHS and EDS were sometimes considered different diseases, or that there was so much controversy surrounding them. A very interesting read.

    ...read the rest here:
    http://www.clinmed.rcpjournal.org/content/13/Suppl_6/s50.full
     
    Last edited: Jun 5, 2015
    zzz, WillowJ, charlie1 and 4 others like this.
  2. Sidereal

    Sidereal Senior Member

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  3. Sidereal

    Sidereal Senior Member

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  4. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    you know....
    when an astronomer spots a peculiarly bright, incredibly massive objects at extreme range...
    they may at first think fault with their detection equipment, so check it
    when it checks, they get others to check
    when they also see same thing, they don't all say "IT'S IN THEIR HEADS!"
    they try and find out what it is!
    years later, it's called a "Quasar"
    they still don't know what it is, but they agree it's a genuine phenomena
    years later still, they believe such things are caused by enormous black holes sucking in the core of entire galaxies.
    yes there ARE fights and issues over such, hey, Science is a *Human Cultural Endeavour* it is NOT the Method itself or remote cold perfect methodology.
    But in most Science they aren't such arrogant jerks or cause other people's abuse and deaths
    So why is medicine infested by so many DICKHEADS?! :bang-head::p
     
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  5. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    What I think may be worth noting is that there is essentially no scientific basis in terms of referenced studies to what my dear friend Rodney is saying here. I admire his enthusiasm but where are the data? About the only piece of data you will find in the references in terms of documenting features of what was then 'benign hypermobility syndrome' is number 5, which you will note has my name on it! (And I was never very happy about the result we published.)

    In those days we did a clinic for people with pain in hypermobile joints. There was no talk of pain elsewhere or widespread pain or POTS or anything. But once people got to know that there was a clinic for people with hypermobility and pain of course everyone with pain who happened to be hypermobile got sent in. So the clinic filled up with people with all sorts of pain and then when the word got about that there was a link between hypermobility and 'fibromyalgia' everyone with fibromyalgia and hypermobility was sent to the clinic from far and wide so Rodney found himself surrounded by people with the two problems and started writing articles about how often they occurred together. As far as I know no research was done to confirm this.

    As I see it the bit about 'all in the mind' is a red herring here. All that we are interested in is whether widespread pain is causally related to hypermobility or whether, if they do occur together, it is an irrelevance. There are people with severe hypermobility who have dislocations, but I am unclear what that has to do with pain elsewhere. Sadly, as far as I can see the 'experts' in this field have failed to provide us with any useful data, so nobody really knows. Whether you say hypermobility is the same as EDS 3 is just a matter of words. Both of them are defined however you want to define them so some people can define them the same and others not. It doesn't make any difference to what we know about causes of joint pain.
     
  6. ahmo

    ahmo Senior Member

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  7. Sushi

    Sushi Senior Member Albuquerque

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    Taking myself as an N = 1, I have hypermobility, EDS3 or whatever you want to call it, but my only pain is related to frequently getting "out of alignment" which causes muscle strain/pain and sometimes pressure on nerves. I regularly see an osteopath for manipulations to get my body back in line.
     
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  8. charlie1

    charlie1 Senior Member

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    MCAS and EDS and hypermobility...I will be reading / listening to that article as soon as I'm able!

    I've always been hypermobile but I was still active...golfing horseback riding etc up to when I became ill 3 yrs ago which over time included time periods of MCAS and even longer time periods of POTS. During this time my hypermobility got worse and now causes frequent dislocations which in turn causes severe migraines (life long battle with headaches) until my body is re-aligned. If I could afford it, I would be seeing my PT daily as I can't put the bones in place. Especially problematic for me are my shoulders and elbows.
     
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  9. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    No citations for this, though.

    I always thought that connective tissue problems implied problems with muscles holding together (and with myself as an example, any really good PT/similar that I see will complain that my muscles are fragile, and may the blame connective tissue specifically), with the fascia around organs, with the blood vessels, and so on.... but variable because there can be different genetic problems that cause different problems in different areas.

    From what I understand, there are thuoght to be more than one gene involved in the type(s) that don't yet have genes associated, and this causes complexity in the research.

    This article seems to lack many citations. It's dated 2013.

    Citation 21 is
    1. Ross J, Grahame R. Joint hypermobility syndrome. BMJ 2011;342:c7167.
    FREE Full Text

    There do seem to be more citations there.
     
    charlie1 likes this.

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