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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. Allyson

    Allyson *****

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  2. Allyson

    Allyson *****

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    very intereting when i google glycosaminoglycans i got this info


    glycosaminoglycan /gly·cos·ami·no·gly·can/ (gli″kōs-ah-me″no-gli´kan) any of a group of high molecular weight linear polysaccharides with various disaccharide repeating units and usually occurring in proteoglycans, including the chondroitin sulfates, dermatan sulfates, heparan sulfate and heparin, keratan sulfates, and hyaluronic acid. Abbreviated GAG.

    now Dr Teitelbaum noted that heparin helped lot of poelple with ME but no other anti- coagulants did so that i s perhaps interesting that i t falls into this category !

    [later edit - i think this is my error sorry - they actually say heparan sulphate where Teitelbaum was talkig about the anti-coagulant heparin sulphate so i think they are 2 separate things... Not sure.]

    I started on glucosamine hydrochloride yesterday as i had it in the cupboard

    If only they made it small enough to swallow - can t them make them into 2 tablets instead of one?
    I will try and buy caps. phoned chemist -they are quite expensive -that is why doc said if they don t help after about a month save your money; will try iherb.
  3. merylg

    merylg Senior Member

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  4. Allyson

    Allyson *****

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    thanks so much for that Meryl - the article on page 24 in your link is good too

    i just realise the geneticist asked about nosebleeds and have had them constantly for years and never knew why

    started a poll if anyone wants to answer to see how prevalent they are

    kind of small symptom it is easy to overlook

    cheersl

    Ally
  5. Allyson

    Allyson *****

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    merylg likes this.
  6. Allyson

    Allyson *****

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    here is not a bad clip on connective tissue - students learign about it giving presentaions

  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    [​IMG]

    Have you heard the news? EDNF has partnered with the Greater Baltimore Medical Center (GBMC) in Towson, Maryland, to establish the Ehlers-Danlos National Foundation Center for Clinical Care and Research at GBMC's Harvey Institute for Human Genetics. Needless to say, we are very excited to share this news with you. You can read the full news release here.
    As you know, EDNF is a public charity and we rely on individual donations like yours to work towards our mission. We have already started fundraising for the center, and you can assist us greatly by donating here.
    Also, Dr. John Chessare, the President & CEO of GBMC HealthCare, will be joining us at the 2013 EDNF Learning Conference in Providence, Rhode Island this August to discuss the Center. Can you join us?
    Learn more about the conference here.
    You can register for the conference here.
    Thank you for your support.
    Sincerely,
    [​IMG]
    Shane Robinson, EDNF Executive Director
    [​IMG]
    Allyson likes this.
  8. Allyson

    Allyson *****

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    GLYCOSAMINOGLYCANS


    the first itme i have seen int mentioned now since the geneticist mentioned it was worth a try for EDS
    Defective Initiation of Glycosaminoglycan Synthesis due to B3GALT6 Mutations Causes a Pleiotropic Ehlers-Danlos Syndrome-like Connective Tissue Disorder.

    Malfait F, Kariminejad A, Van Damme T, Gauche C, Syx D, Merhi-Soussi F, Gulberti S, Symoens S, Vanhauwaert S, Willaert A, Bozorgmehr B, Kariminejad MH, Ebrahimiadib N, Hausser I, Huysseune A, Fournel-Gigleux S, De Paepe A.

    Source
    ...
    Center for Medical Genetics, Ghent University Hospital, De Pintelaan 185, 9000 Gent, Belgium. Electronic address: fransiska.malfait@ugent.be.

    Abstract

    Proteoglycans are important components of cell plasma membranes and extracellular matrices of connective tissues. They consist of glycosaminoglycan chains attached to a core protein via a tetrasaccharide linkage, whereby the addition of the third residue is catalyzed by galactosyltransferase II (β3GalT6), encoded by B3GALT6. Homozygosity mapping and candidate gene sequence analysis in three independent families, presenting a severe autosomal-recessive connective tissue disorder characterized by skin fragility, delayed wound healing, joint hyperlaxity and contractures, muscle hypotonia, intellectual disability, and a spondyloepimetaphyseal dysplasia with bone fragility and severe kyphoscoliosis, identified biallelic B3GALT6 mutations, including homozygous missense mutations in family 1 (c.619G>C [p.Asp207His]) and family 3 (c.649G>A [p.Gly217Ser]) and compound heterozygous mutations in family 2 (c.323_344del [p.Ala108Glyfs*163], c.619G>C [p.Asp207His]). The phenotype overlaps with several recessive Ehlers-Danlos variants and spondyloepimetaphyseal dysplasia with joint hyperlaxity. Affected individuals' fibroblasts exhibited a large decrease in ability to prime glycosaminoglycan synthesis together with impaired glycanation of the small chondroitin/dermatan sulfate proteoglycan decorin, confirming β3GalT6 loss of function. Dermal electron microcopy disclosed abnormalities in collagen fibril organization, in line with the important regulatory role of decorin in this process. A strong reduction in heparan sulfate level was also observed, indicating that β3GalT6 deficiency alters synthesis of both main types of glycosaminoglycans. In vitro wound healing assay revealed a significant delay in fibroblasts from two index individuals, pointing to a role for glycosaminoglycan defect in impaired wound repair in vivo. Our study emphasizes a crucial role for β3GalT6 in multiple major developmental and pathophysiological processes
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Allyson wrote:

    Sorry Allyson,

    This isn't an aspect of my illness that I am choosing to spend much time on now, though I did a lot of research on it a few years ago. Now I am looking more to aspects of this illness that offer more treatment options.

    So I don't have time to hunt down articles--but if you want to pursue it you will find more exploration of it under ME/CFS than under EDS as ME/CFS researchers have recognized the role of EDS in the illness but this is not probably true conversely.

    Sushi
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  10. Allyson

    Allyson *****

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    thanks Suhi for that but i must say i find it problemstic when people say " there is abundant research that shows X

    thenn when you ask for an example of the research ...they have NOTHING to provide.

    That is fine if you are too busy to track it - i quite understand but please son t use it as the basis for an argument - or to dismiss an argumet or line o thinking buy sayig there is a lot of evicence or reseach ( as in your previous post on the other thread) and then not provide ANYTHING at all to back that argument.

    It makes it rather an empty and facile claim

    i am a bit anoyed as someone else said that recently - there was ample research on a topic to bakc her claim 0 - and when i asked for some she said "personal experience"

    someone else provided an umpublished report of a [maybe] forthcoming paper that said the exact opposite of what she clamed is said she did when she used it to bck her argument.


    ...so i might be being too sensitive here and if so no offence is intended to you.

    cheers,

    Ally
  11. Kina

    Kina Moderation Team Lead

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    Allyson -- could you explain why you believe EDS and ME are related. I just don't see the connection other than overlapping symptoms. There are overlapping symptoms with many conditions and this doesn't mean in any way they are related. If you look at the Canadian Criteria, you will see that ME is not a connective tissue disorder. Also EDS is genetic, ME is not.

    In general, it is absolutely possible to have more than two illnesses at once. I do. Some of the symptoms overlap but they are in no way related. It's possible to have EDS and ME, it's possible to have EDS and lyme, it's possible to have EDS and Cancer, it's possible to have EDS and AIDS, it's possible to have EDS and Fibromyalgia, it's possible to have EDS and Hepatitis, it's possible to have EDS and thyroid disease. These are distinct disorders with their own diagnostic criteria even though they all share some similar symptoms.
  12. Allyson

    Allyson *****

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    Yes Kina, as i have staed a few times now in this thread the reason i began to think they are related is because a professor of medicine at Melbourne University - (arguably Australia 's top university ) who is also head of a Spinal Unit in a major teaching hospital in Melbourne told me he thinks they are one and the same for a lot of people and the EDS diagnosis has been missed.

    I have since found several research papers - most listed or summarised earlier in this thread - that also support this line of enquiry.



    And a senior British Rheumatologist - Rodney Grahame - has also unequivocally stated he thinks lots of people who think they have M E actually have EDS. I htnk he says at least 65 per cent form memory.- i do NOT mean hypermobility when i talk about EDS.

    that quote and his lecture notes to an international conference are also in the thread above.

    As medical professional myself I see the merit in this line of thinking and understand how research ideas arise and are tested and promulgated before they are established or proven.

    As with ME, EDS symptom research has been overlooked or not taken seriouly for many many years outside of hypermobility

    Also it has not ben proven that ME is not genetic - who has been tested for it?
    the 2011 International consensus criteria do mention the possibility if not more of a geneticc link.
    And DR Don Lewis ( one odf the co- authors of the 2011 International consensus criteria) speaking at last year ME cfs conference in Mebourne said t appears there IS gentic link in ME.
    "You were born with it" were the word he used from memory.

    again, the research has not been done to fully test this as far as I am aware, and genetic testing is not yet refined enough to establish it one way or another.

    the reason i am keen to discuss it is - ot may well be right ; the professor who told me is quiue interested in it but he has many other reserch concerns - it may take 10 - 20 years for the idea to establish itself and get reasearched in the medical community....I can do math...i may not live that long and i would like to assit the line of enquiry and see if it resonates with others and if so if we may hasten research into it and find a cure.

    No- one is obliged to read or follow or reply if they are not interested.



    Peronally i would look into moon landings s the cause if it were offered as to date, no known cause has been proven for ME an until it does i think we should examine all avenues.

    But seriously - in five years of researching the topic this is the only topic that has any plausible explanation for the compexity of ME and its vast range of seemingly un-related symptoms - CTD permeates and indeed makes up muc of the entire body - and for the intermittent nature of its symptoms.

    FInally the fact that this thread has had well over 18000 hits - indicates that there may be a fair degree of interest in this topic from PWME, and one needs to ask why that would be so.

    best regards and thanks for your continued interest.

    Ally
  13. Allyson

    Allyson *****

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    Kina,


    here is the Rodney Grahame link form his international medical conference lecture - to rheumatologists form around the world - sorry that was my error - not 65 percent but 650 000 cases a year in America

    World-renowned EDS expert, rheumatilogist Dr Rodney Grahame (University College London) points out that, in America, almost 650,000 cases of EDS are missed ANNUALLY, based on studies that suggest almost 95% of cases presenting to clinics are missed, most often diagnosed with other things (Fibro/ ME/ csf, etc.). See his lecture notes here: http://tinyurl.com/cc5qk57
    A
  14. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I'm sure Rodney Grahame is right that many EDS diagnoses are missed. But he is not saying that 650,000 patients who have EDS are diagnosed with ME--he is saying that this number are misdiagnosed and he gives examples of some of the misdiagnoses. I think from his statement it is clear that he thinks that EDS is a different illness than the others he mentions. That is what misdiagnosis mean--one illness wrongly identified as another.

    Sushi
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  15. Kina

    Kina Moderation Team Lead

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    Just because one professor says they are one and the same doesn't mean they are. Look at the diagnostic criteria of both, they are not the same. Unfortunately, many people are misdiagnosed with ME. And usually that's down to a lazy doctor not digging deep enough, not doing the proper tests, not ruling things out. Most doctors, researchers would disagree that they are related.

    So again, please explain how ME is a connective tissue disorder as there are hundreds of research papers that show it is not. In fact, ME has never been described as a connective tissue disorder.

    Of course people get misdiagnosed. Misdiagnosed doesn't mean the disorders are in any way related. I would assume the figures you quote are likely inflated due to a variety of factors.

    The problem is, you can't just decide that EDS and ME are related because they share common symptoms. Can you say that because EDS has an effect throughout the body and is a connective tissue disorder that because ME has effect on the whole body it must be a connective disorder -- no you can't because that would make Cancer a connective disorder too.

    Many people with ME have had genetic tests to rule out other conditions. I have had genetic testing. It may well be true that ME has a genetic component but that doesn't mean it is related to EDS. Would you say trisomy23 (Down Syndrome) is related to EDS -- it's genetic too.

    Enough research has been performed on ME to give it a clinical picture -- or things you must have to be diagnosed. EDS and ME have two completely different pictures.

    The number of hits just indicates how many people have looked at it. If each of the people posting on the thread read all the posts, the numbers increase quite rapidly. It is an interesting topic and I do believe most people with ME look at alternative diagnoses. I just don't believe other than sharing some common symptoms that the two are related. There are just too many glaring differences.
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  16. Allyson

    Allyson *****

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    yes thanks for the clarification

    He is not the professor of medicine i am referring to as saying he thought they were the same thing though.

    His research was cited here as an extra incentive i had for deterimining the diffference /overlap /similarities etc etc

    That s in addtion to the opinion os aprofessor ovf medicine who sees likely thousands of patients a year.

    We all Know this disease has been pathetically under researched and that there are a million unsolved questions.

    what is the harm in examininng a valid line of enquiry positied by and informed expert?

    We complian about closed minds of medicos who are not open th things they have not been taught or things outside the norm.,...let us not make the same error in response to a new possiblity.
    it may be right - it may be 100 percent wrong

    but at the moment there is enough reason to question it and examine it to see what the truth is.

    cheers Sushi- i do appreciate all your thoughtfulnees in this topic.

    ALly
  17. Kina

    Kina Moderation Team Lead

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    See above RE: Sushi's comment.

    This is an estimate. You can only come to a definitive conclusion if you actually review the cases of each patient and do the proper testing. It certainly doesn't mean 650,000 people with ME have been misdiagnosed. Again misdiagnosis does not mean that the two conditions are related, it means doctors aren't doing proper diagnosing. I am sure many people with different forms of arthritis are misdiagnosed. If anything, it suggests that genetic testing should be the gold standard of rheumatologists.
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  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Allyson

    As I mentioned, EDS is no longer my research interest. I am now reading articles that are directly related to issues that I think are likely to be causative of ME. It is some years since I was researching EDS and I no longer have references at hand.

    I agree with Kina that these are two quite different illnesses with overlapping symptoms and genetics. The doctors and researchers you are referencing are not ME experts--they are in other fields and it is doubtful that they know as much about this illness as physicians and researchers who have devoted their careers to it.

    You mentioned the number of hits on this thread. Quite a few of these are from those who don't agree with the theory you are presenting and wish to present another point of view.

    Sushi
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  19. Allyson

    Allyson *****

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    yes the number was pointed out to me byy someon woho thought it may be a site record Sushi


    i entirely not evvery one agres and i do not expect them to

    (please do show me the topic - here or elsewhere - that everyone agrees with though - very curious! lol)

    best,
    Ally
  20. Allyson

    Allyson *****

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    P you did not tell me and i would love to know if your EDS diagnosis was only based on joint and hypermobility issues as is so often the case .

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