Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Ehlers Danlos Type 3 Hypermobility - Do you have it?

Discussion in 'Connective Tissue Disorders/Ehlers-Danlos Syndrome' started by Eeyore, May 9, 2015.

  1. Hutan

    Hutan Senior Member

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    Maybe more women have hypermobility and more women have ME. Hmm.
    But still potentially a significant difference in frequency of hypermobility between people with ME and those without.
     
  2. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    The trouble is that all sorts of factors can skew those figures - as Amolak will very readily admit. We need a proper population based study with people being assessed 'blind' for hypermobility by people who do not know whether or not they have ME.
     
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  3. Eeyore

    Eeyore Senior Member

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    There certainly could be some bias regarding physician and/or patient expectations of hypermobility / ME comorbidity. However, the fundamental problem with ME is there is so rarely high quality research to work with. One is given the choice of either doing nothing, or working off relatively low quality data, with a few high quality studies thrown in from time to time. It's not working in the world of heart disease, breast cancer, or even RA where there is a plethora of new, high quality research on an ongoing basis.

    Scientists are taught to be skeptics - which is not bad in itself. The problem is that we create a self perpetuating cycle where skepticism leads to a lack of action because there is no good quality research to back something up, so as a result, no good quality research gets done!

    I think this is why so many of us hope the Rituximab trials change this - if in fact we can get some interest by the scientific community based on some high quality, double blinded, placebo controlled studies, then there will be enough evidence that there is a problem to actually look for some evidence of a problem...
     
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  4. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Fair enough but one has to be very sceptical about claims that look as if they may be self-fulfilling. Clinics are now full of people with hypermobility and ME because there is supposed to be a link and so people with both get referred. In the hypermobility clinic in 1977 nobody had anything like ME as far as I remember.

    Scepticism need not lead to lack of action. Scepticism is leading to European collaborations that should generate the sort of population based data we need. Various people are pushing for the studies we need and people are applying for grants. I would be more sanguine.
     
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  5. Eeyore

    Eeyore Senior Member

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    @Jonathan Edwards - I'm not disagreeing with you at all and share your skepticism about the EDS connection until it is shown with a solid epidemiological study of sound design. Just pointing out how this can be a self-propagating cycle - essentially a flaw in the basic design of the way we allocate finite resources to medical problems.

    Part of the flaw is just what you mention - by failing to allocate a relatively small amount of funding up front to determine if in fact there is even a problem, we waste quite a lot of (often other people's) money and time pursuing dead ends - which is also unproductive and bad science. We are so often penny wise and pound foolish.

    Your insider viewpoint that ME research really is changing from this awful world of pseudoscience and hand-waving is very encouraging. You would be in a position to see it before I would. I really hope it comes to fruition. One of the most trying aspects of the illness for me is finding that turning to science gets me ignored and turning to those who would "help" gets me unproven treatments or even snake oil. I continue to hold the view that it is not science that has failed us but rather its flawed human practitioners (and those who control the purse strings) - but I can understand why so many ME patients abandon the scientific pursuit of truth and turn to "alternative medicine." The amount of money wasted in useless treatments and pointless, poorly designed studies could not only fund the studies we need to understand ME, but also much of the cost of treatment! That doesn't even start to look at the lost productivity and human suffering.

    I also feel extremely hopeful and encouraged by the work of the Norwegians. They don't seem to have found the cause, but went at the problem from a different angle entirely. Efficacy of treatments that work in other autoimmune diseases in well controlled ME trials - which I believe is what we are seeing - is very strong evidence for an autoimmune/autoinflammatory or at least immune dysregulatory mechanism of some sort. I noted they are now starting phase 2 trials with cyclophosphamide, which apparently has shown efficacy in some patients who did not respond to rituximab. While I personally would not be in a rush to take alkylating agents, I can see why some patients would make that choice, and I would not rule it out - but what is more interesting to me is what it says of the mechanism. Again it suggests autoimmunity or something similar.
     
    Last edited: Jun 25, 2015
  6. NilaJones

    NilaJones Senior Member

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    Here's a paper by KDM (second author) from 2006 finding 58.5% of ME/CFS patients have hypermobility:

    http://www.ncbi.nlm.nih.gov/m/pubmed/16396727/?i=17&from=De Meirleir K[Author]

    (NB, I only read the abstract.)
     
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  7. PattyPlum

    PattyPlum

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    Yes I have EDS 3. I was diagnosed last year at the age of 54!

    I had normal childhood. I dislocated my knee at 13, 17 and 23. When I was 24 I had Epstein Barr which gave me ME/CFS. Now I know I have EDS and having chronic fatigue from the autonomic dysfunction which goes hand-in-hand with EDS and this all makes sense. I have just been diagnosed with Postural Tachycardia Syndrome, too. I have painful neuropathic pain all over my body and head and that is also part of the package. At last I know what is wrong with me. Took too long to get a diagnosis of each part of this condition.
     
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  8. PattyPlum

    PattyPlum

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    EDS is genetic and the ME/CFS symptoms come later.
     
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  9. TrixieStix

    TrixieStix Senior Member

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    @Jonathan Edwards I just found out today that my primary doctor thinks I may have Relapsing Polychondritis!! :( I had never even heard of the disease until earlier this week, but that's not surprising given how rare the disease is (affects only 3 in every million persons). Earlier this year I began to experience episodes where one of my ears gets super red, hot and painful (sparing the lobe). I started taking photos of my ears every time it happened but had not mentioned it to my doctors until last week. After reading up on RP I realized it really does sound like what I'm experiencing. I don't ususally get scared, but this possibility has me a tad scared.

    3 weeks ago I developed what we now realize was episcleritis in my right eye (it was wrongly assumed to be an infection at first), then a few days later I had one of my "red ear" episodes, then days later my right cheek turned bright red, hot and very painful for a day, and finally 1 week ago I woke up to find the right side of the bridge of my nose swollen, slightly red and extremely painful (like someone had hit me in the nose with a pipe). The "red ear" thing started back up at the same time as well.

    The nose swelling and pain has just started to simmer down. An MRI of my face was done a few days ago and the results came back showing absolutely no signs of infection and blood work came back showing a mildly elevated WBC and mildly elevated ESR. My doctor says things are pointing very strongly in the direction of Relapsing Polychondritis and it would explain other symptoms I've developed over this past year (episode where my breathing becomes restricted and feels like my wind pipe/throat area is half closed up, tightness/soreness in my throat structures when I swallow (feels like I have to work extra hard to swallow), episodes of hoarseness, severe joint pain & tenderness of the small bones of my fingers and wrist and toes, ear canal pain.

    I was already scheduled to see a new doctor who specializes in both immunodeficiency & rheumatology (Dr. Karr at University of Washington in Seattle) in 3 weeks to delve deeper into my genetic complement deficiency (my C3 is 30% of normal, CH50 is low, C4 normal, AH50 normal) and do more testing to figure out if I have a Factor I or Factor H deficiency thus resulting in the low C3 or if it's a deficiency of C3 itself, etc. So now on top of that I might have RP! Any advice in regards to RP diagnosis?
     
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  10. waif

    waif

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    i'm so braindead i didnt see this thread
    i have h-eds. hi all

    n=1 my dad has FREAKISIHLY soft hands and when he was a kid he could make his shoulders touch each other. i've never had genetic testing but there is absolutely a genetic competent with me. because he is a man, his symptoms are less pronounced. and apparently his dad watched tv with mirror glasses on because his neck hurt so much, red alert red alert.

    a problem with being labeled is an edser as you/doctors etc tend to blame quite literally everything on eds when it could be caused by something entirely unrelated. saying i have eds has only been extremely useful with physical therapy, because i could severely injure myself. everything else is meh.
     
    Last edited: Oct 22, 2017

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