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Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

Discussion in 'Connective Tissue Disorders/Ehlers-Danlos Syndrome' started by Allyson, Nov 12, 2012.

  1. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Allyson

    If the last post was directed at me, I did tell you how I was diagnosed with EDS (check back to my post), and no, it was not based just on hypermobility and joint issues.

    Sushi
  2. Allyson

    Allyson *****

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    ALly--says -----
    yes it is possible that the two may turn out to be not related ; to me there seem to be many glaring similarities. You may not believe it and it may not be right in the end ...but it is worth examining I am sure you agree. I think refined gentic testing may be the only eventual answer and i am heartened by the fact that the genticist i saw says that the speed of genetic research is increasing at an exponential rate so that may be sooner that we think - he said 2- 3 years away for EDS. If there is a genetic component to ME then epigentic research and treatment may hold some hope for us - the only real hope i can foresee..


    I have still never seen andother plausibe reaon for why we have good - totally normal times and days when other times we are soill and as this theroy explains it to my complete satisfaction...however it is also one thing that is EASLY tested by research ... a very simple and inexpensive research study could test this and throw light on this issue and i would like to see someone attemtp that.

    thanks again for all your thoughtful feedback, it is really appreciaited


    best,
    Ally

    ps i could ot think of t quick way to answer your segments so hope it is clear - i have written "Ally----" before all my answers
  3. dannybex

    dannybex Senior Member

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    Hi Allyson,

    It's a little difficult to decipher this last paragraph, but I personally don't know of anyone with ME/CFS who has "totally normal times"...and also how the EDS theory explains it to your satisfaction. With connective tissue disorders like EDS, perhaps it's possible to have some times where one feels "totally" normal, but not with ME/CFS. But again, that perhaps depends on your definition of 'normal times'. If you mean a few hours on certain days, then I would agree that some of us can feel at least almost normal...but just for a few minutes to maybe a few hours.

    I do believe there is a subset of ME/CFS patients who also have some degree of EDS or other connective tissue problems, but I don't feel ME is "due to EDS", nor that EDS is caused by genetic abnormalities.

    But we can all agree to disagree.
    Allyson and Valentijn like this.
  4. Valentijn

    Valentijn Activity Level: 3

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    Not even close, I'm afraid. The biggest and most read thread I know of would be at http://forums.phoenixrising.me/index.php?threads/pace-trial-and-pace-trial-protocol.3928/ . Over 2000 posts and over 100,000 views.

    Keep in mind that every time you or anyone else even looks at the thread, it counts as a view ... so it really doesn't mean much. In certain subforums I tend to click on each thread, even if I don't read it, care about it, or agree with it. It's simply a nice way for me to change the color of the icon for that subforum so I can tell with a glance if there's any new posts.
    dannybex likes this.
  5. Allyson

    Allyson *****

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    thanks Danny - j would have thought that was universal for PWME but i may be wrong - about once every month or 2 i wake up and feel active energetic and "normal"

    i make palns for the day and sometimes start doing things - a CFS speicalist told me this was normal for the condition and the problem was not to do too much at times like this - which is of course what i aalways do - you have so much to catch up on - and crash as a result.

    i have also seen lots of posts by people saying just that
    but i may have it wrong.

    Also most or many evenings i have and hour or so when i can do stuff and have also seen many posts over the yeasr saying the same thing - not if i am crashed of course.

    Perhaps i am abnormal then

    again this is something that could be tested with a research study using acellerometers, diaries etc over a period of a few weeks.....though this would need to be large and lenghty so probly not likely to happen soon, sadly

    cheers

    Ally
  6. Allyson

    Allyson *****

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    yes but was that was for a period stretching over more than 2 years ...this thread has only been up 6 months

    and that point was made by someone else - my point was that there is considerable interest in this topic.

    But i dont think you are interested in it as you have made abundantly clear..... so not sure why you are still reading....


    perhaps it is personal antipathy on your part rather but i have found the tone of your posts on other threads to be abusive and personal in nature an very hurtful so would rather that if you are not interested ....as you have made quite clear ....that you please do not write to me.


    thanks
  7. Allyson

    Allyson *****

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    Hmmm just reading the cover story on PR and note that they say this

    There is a current, urgent need for ME research using patients who actually have ME.” We must have a disease appropriate definition for ME that is separate and distinct from all the other unrelated conditions encompassed by the overly broad, fatigue-focused “CFS” definitions.

    good point; useful letter, lets hope it gets results.


    A
  8. Allyson

    Allyson *****

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    and sorry for my dyspraxic ctyppingg Danny - what it says is that the thesis is easlily testable

    to see if time upright causes the problem rather thatn exertion

    simply lie on e group of patients downn for a few weeks and let another group get upright

    controll for all ohter factors - heat, compression clothing electrolyte consumtion and fluids etc

    then assess their PEM and other crash symptoms

    and compare the results

    to my knowledge it has never been done

    cheers

    Ally
  9. Allyson

    Allyson *****

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    Glucosaminoglycans - Tokyo research

    (They mention a progeroid form of EDS whih i have not come across before.)


    Mutations in B3GALT6, which Encodes a Glycosaminoglycan Linker Region Enzyme, Cause a Spectrum of Skeletal and Connective Tissue Disorders.

    Nakajima M, Mizumoto S, Miyake N, Kogawa R, Iida A, Ito H, Kitoh H, Hirayama A, Mitsubuchi H, Miyazaki O, Kosaki R, Horikawa R, Lai A, Mendoza-Londono R, Dupuis L, Chitayat D, Howard A, Leal GF, Cavalcanti D, Tsurusaki Y, Saitsu H, Watanabe S, Lausch E, Unger S, Bonafé L, Ohashi H, Superti-Furga A, Matsumoto N, Sugahara K, Nishimura G, Ikegawa S.

    Source
    ...
    Laboratory for Bone and Joint Diseases, Center for Integrative Medical Sciences, RIKEN, Tokyo 108-8639, Japan.

    Abstract

    Proteoglycans (PGs) are a major component of the extracellular matrix in many tissues and function as structural and regulatory molecules. PGs are composed of core proteins and glycosaminoglycan (GAG) side chains. The biosynthesis of GAGs starts with the linker region that consists of four sugar residues and is followed by repeating disaccharide units. By exome sequencing, we found that B3GALT6 encoding an enzyme involved in the biosynthesis of the GAG linker region is responsible for a severe skeletal dysplasia, spondyloepimetaphyseal dysplasia with joint laxity type 1 (SEMD-JL1). B3GALT6 loss-of-function mutations were found in individuals with SEMD-JL1 from seven families. In a subsequent candidate gene study based on the phenotypic similarity, we found that B3GALT6 is also responsible for a connective tissue disease, Ehlers-Danlos syndrome (progeroid form). Recessive loss-of-function mutations in B3GALT6 result in a spectrum of disorders affecting a broad range of skeletal and connective tissues characterized by lax skin, muscle hypotonia, joint dislocation, and spinal deformity. The pleiotropic phenotypes of the disorders indicate that B3GALT6 plays a critical role in a wide range of biological processes in various tissues, including skin, bone, cartilage, tendon, and ligament.
  10. Valentijn

    Valentijn Activity Level: 3

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    http://forums.phoenixrising.me/index.php?find-popular/content lists most popular threads in different time frames. But that takes the number of people posting to a thread into account.
    Because you are aggressively pushing incorrect information at people. EDS is an interesting and relevant topic, but it is not ME. By trying to turn many symptoms and diseases here into EDS, you are badly misleading people. I avoided these threads for months, because your reaction to any disagreement was easy to predict ... but now you are posting in many other unrelated threads to push the EDS = ME agenda, and that is extremely annoying and is spreading the potential for harm much further.
    I am posting here because your theories are incorrect. You do not have a right to have your expressed beliefs stand unchallenged, and I am trying to illustrate these problems politely as possible, despite the rather rude things you have said regarding my right to challenge your opinions, and your attacks on my personal experiences as an ME patient.
    dannybex likes this.
  11. Allyson

    Allyson *****

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    Hi again Danny

    i thinnk also it depends on how much you do - when i worked i had much less good time and as i get older good days seem less too - but hard to quantify.

    i realise this is not at all scientific but i was puzzled as i have heard a LOT of PWME say they have good or normal times so i wanted some verifications or otherwise -


    it might be good topic to start a poll on though to get a rough idea



    .
  12. Allyson

    Allyson *****

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    just reading through the 2011 concensus document


    Notes: Orthostatic intolerance may be delayed by several minutes. Patients who have orthostatic intolerance may exhibit mottling of extremities, extreme pallor or Raynaud’s Phenomenon. In the chronic phase, moons of finger nails may recede.



    however just noticed they say this too

    Joint hyper-mobility is common. !!

    as is Prolapsed Mitral Valve,

    and this is intersting

    evidence supporting a genetic predisposition to ME points to modifications in serotonin transporter genes

    actually a very interesting document that i have only skimmed though til now - thanks Kina for pointing me in that direction.









    A
  13. Allyson

    Allyson *****

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    just saw this posted on another ME.cfs site
    and reposted with permission from author

    quote
    Just wanted to put the info out there that I am another CFS patient (of 3 years) who has just learned that I have Lyme Disease through positive test results from an overseas lab (and clinical diagnosis - what I thought were CFS symptoms all fit with the Lyme picture). I mention this so that others who may be wondering about Lyme consider getting tested or even just read up and learn more.

    unquote

    very happy for her and shows it pays to connsideer all options with this illness - as she is young this will be probably treatable for her so we ara ll very happy for her.

    A
  14. dannybex

    dannybex Senior Member

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    Thanks for asking the question Allyson. Kind of proves my point. Nearly everyone said 'an hour' or 'a moment', with the exception of the one person who said they take their dog for "very long walks". They must have fibro, or be misdiagnosed in some way. Just my two cents.

    Anyway, while I can understand your focus, I don't think it's really good to obsess over one aspect of this very complicated and complex illness. There are many, many things that can or might explain our many various symptoms.
    Valentijn likes this.
  15. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Note: Posting in a thread is not "writing to you." A thread is a method of opening a topic for discussion. All who have experience or interest in the topic will post there. It you open a thread, expect discussion of the topic--both supportive of the poster's line of thinking and questioning that line of thinking.

    Sushi
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  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Why is this post in a thread on a thread about EDS?

    It more properly belongs on a Lyme thread.

    Sushi
  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    (Allyson writes to Valentijn:
    Allyson

    I am also posting on this thread because it seems the responsible thing to do. When someone is presenting a point of view on a health forum that is contrary to the research on the subject (in this case ME), it can be very misleading for members who are just beginning to explore their illness.

    No responsible research on ME has ever suggested that ME is EDS or vice-versa. ME is not a connective tissue disease. If you carefully read the Canadian and International Criteria, this is very clear.

    By "cherry-picking data" it is possible to attempt to relate anything to anything. But this is not helpful to other patients.

    I agree with Valentijn that EDS is an interesting topic but, to me, it seems that by trying to relate every ME symptom to EDS, you may be discouraging any real interest in EDS as well as misleading ME patients who may not have the time and energy to do a lot of reading about their illness and rely on this forum for information.

    Sushi
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  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Why post this here?

    This is a comment on the cover story--it belongs on that thread.

    Sushi
  19. dannybex

    dannybex Senior Member

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    Excellent point. Plus, most of the posts are Allyson replying to her own posts.
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  20. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Yes, that is certainly a relevant observation for someone who wants to discuss the number of "hits" and posts.

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