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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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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. Valentijn

    Valentijn Activity Level: 3

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    I've checked my genes for the most common types of EDS, and got no results - even though I can bend my thumbs to touch my forearms, bend my pinkies back too far, touch my hands flat on the floor while standing with straight legs, etc .... in fact, I used to bend my pinkies all the way back to touch my forearms when I was a kid, to impress my friends :alien:

    But then I also looked in my SNPs for a gene involved a rare type of EDS (VIIC) which I don't have the extreme skin symptoms for. But I do have quite a few rare-ish alleles on that gene (ADAMTS2):
    rs6862563 - AG (5.08%)
    rs181797 - GG (4.85%)
    rs878933 - AA (3.71%)

    So maybe there's something going on with that gene, other than the extreme variations (sections missing) that cause severe symptoms.
     
  2. GaryK

    GaryK

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    Thank you Allyson for all your hard work here I have found this whole thread very interesting. Tip my hat to you and I really had thought quite a bit about your long Air plane trip when it first started for you and this made a lot of sense to me and made me think of Dysautonomic reasons we all come to chronic illness and seem to not have started with Virus/Bacteria/Microbe infections. This had always bothered me as to why some of us got sick without post viral sickness. Your story is a great story for that and I have seen others here whole also have given many storeys alike. For some reason your story made the light go on. Thanks again for this thought provoking and inforative thread.

    Gary K
     
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  3. Allyson

    Allyson *****

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    Hi Gary,

    thanks very much for your interest and kind words; I am glad if you found it helpful.

    Yes I wonder why some of us have swollen lymph nodes and others never do among other things so I think there are still many things to be sorted...hopefully further research and polite, informed discussion and observation might provide some definite answers soon.

    Best,

    Ally
     
  4. merylg

    merylg Senior Member

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  5. Allyson

    Allyson *****

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    I tried to contact Cleveland Clinic to find out the cost of the blood volume test for those in the States ut they need a US address in the on-line query form. Is anyone in Us/Canada able to ask them apost the cost here please and if it is covered by insurance and in what circumstances.....many thanks in advance,
    here s the link and the on-line query form is down at he base scroll down for it

    http://my.clevelandclinic.org/heart/services/tests/nuclear/bloodvolumetesting.aspx

    Ally
     
  6. Allyson

    Allyson *****

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  7. Allyson

    Allyson *****

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    EDS Criteria by Dr Francomano:

    ://www.csfinfo.org/node/291

    For an EDS dx you need 2 major, one major and 2 minor or 4 minor. If there is a first degree relative, it changes... 2 minor only are needed.

    Brighton Criteria:

    Major Criteria

    •A Beighton score of 4/9 or greater.
    •Arthralgia for longer than 3 months in 4 or more joints

    Minor Criteria

    •A Beighton score of 1, 2 or 3/9 (0, 1, 2 or 3 if aged 50+)
    •Arthralgia (> 3 months) in one to three joints or back pain (> 3 months), spondylosis, spondylolysis/spondylolisthesis.
    •Dislocation/subluxation in more than one joint, or in one joint on more than one occasion.
    •Soft tissue rheumatism. > 3 lesions (e.g. epicondylitis, tenosynovitis, bursitis).
    •Marfanoid habitus (tall, slim, span/height ratio >1.03, upper: lower segment ratio less than 0.89, arachnodactyly [positive Steinberg/wrist signs].
    •Abnormal skin: striae, hyperextensibility, thin skin, papyraceous scarring.
    •Eye signs: drooping eyelids or myopia or antimongoloid slant.
    •Varicose veins or hernia or uterine/rectal prolapse.
     
  8. Allyson

    Allyson *****

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  9. merylg

    merylg Senior Member

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    Malfait F, Wenstrup R, De Paepe A. Ehlers-Danlos Syndrome, Classic Type. 2007 May 29 [Updated 2011 Aug 18]. In: Pagon RA, Adam MP, Bird TD, et al., editors. GeneReviews™ [Internet]. Seattle (WA): University of Washington, Seattle; 1993-2013. Available from: http://www.ncbi.nlm.nih.gov/books/NBK1244/
     
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  10. Allyson

    Allyson *****

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    Thanks for that Meryl,

    It is looking like POTS at least is a common symptom for EDS ME Lyme and of course POTsies ......when poeple finally get accurately tested for it.

    Seems it has been widely overlooked due to ignorance of it and correct testing procedures - again read the other day of doctors leaving people on tilt tables see if they fainted and using that as a diagnostic method!!! there is no need to faint to have POTS and a good diagnostician can often diagnose it on symptoms alone..
    There are lists of good POTS docs on some fb pages or go to a PoT page/s on and request a recommendation to one in your area.


    Ally
     
  11. merylg

    merylg Senior Member

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    Allyson I found that article interesting for the list of minor diagnostic criteria of Classic Type EDS...which is supposedly rare. I seem to have a lot of those issues.
     
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  12. Allyson

    Allyson *****

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  13. taniaaust1

    taniaaust1

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    Here's a link for anyone wanting work out their Beighton score http://www.shoulderdoc.co.uk/article.asp?article=645
     
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  14. merylg

    merylg Senior Member

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  15. xks201

    xks201 Senior Member

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    Yeah the nervous system is malfunctioning. Veins are not dilating or constricting when they are supposed to. But anything can cause that. Hormone problems, medication interactions like beta blockers, nutritional deficiencies, low blood volume, dehydration.... etc etc etc.
     
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  16. Allyson

    Allyson *****

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    Yes, true Xks , other things can cause POTS but in this theory it is actual genetic defects in the connective tissue that is making defective veins that are too stretchy - thus causing blood pooling when upright....the same genetic defect that causes the loose ligaments and cartiledge that creates the joint laxity in some.

    so it is visible or demonstrable in the joints, but less so ... so far at least ... in the veins and surrounding tissue matrix

    - that may change with more use of upright MRIs that measure changes to blood flow on change of posture.

    cheers,
    Ally
     
  17. Allyson

    Allyson *****

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    I note with interest that several more PWME in Australia have now been diagnosed with EDS 3 and many others have tested positive for Lyme disease.

    I also note that some people with evident and even extreme joint hypermobility have been diagnosed with Lyme and accepted that a s a primary diagnosis. (Lymies often have POTS too.)

    I wonder if it is likely that with the compromised immune system of EDS that EDSers would be more susceptible to Lyme. so they could have BOTH. Than may explain why many with Lyme do not seem to respond to the treatment - they may still have the underlying and genetic EDS causing similar symptoms.

    Often those who are hypermobile do not realise that they are as they have always been like that and often family members are too..... so it seems normal to them.

    So best to check yourself the Beighton Score/Brighton Scale for hypermobility and to be tested for POTS/OI too, even with a LYME diagnosis .....and for all PWME too for that matter - POTS/OI is a major and easily diagnosed symptom that for some reason has been overlooked in its significance to ME as so few are tested for it.

    I see PWME say " I do not have POTS" and when you ask where they were tested or by whom they say " I was not tested - I just know I don't have it"..... That would be like saying I do not have Lyme disease when you have not been tested - you just do not know unless you are tested for it.


    A
     
  18. Allyson

    Allyson *****

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    this was fascinating - how people can STILL resist new ideas without testing them out first - we learnt nothing from Gallileo?

    I loved it when a few weeks ago, the Australian guy got the Nobel Prize for discovering that stomach ulcers are caused by H-Pylori: I was teaching in the eighties in Australia and I was just there after he had done his first publication on it – I was just there teaching at the University of Sydney .... – when I heard about this weird guy and he just had lost his license. It was not at all mentioned when he got the Nobel Prize – but this guy actually lost his license for discovering that stomach ulcers are caused by H-Pylori ---- then a year later it was reinstalled when some friend at the University repeated the study just to redeem his license – he just wanted to help him, he didn’t care about the H-Pylori – he just wanted to help his friend – he confirmed the results, because of that he got his license back, and now he got the Nobel Prize for it. I thought this was great. That really showed that the Nobel people in Sweden - they are good people, they know the trend in politics and know who to support a little bit.
    Dr Klinkhardt


    A
     
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  19. Allyson

    Allyson *****

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  20. Allyson

    Allyson *****

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