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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. dannybex

    dannybex Senior Member

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    Allyson,

    I hope you'll take the time to try and understand that no one here is trying to stop you from posting, but only to point out the other side of the hypothesis that you've raised with your question.

    Some of us may very well have some connective tissue problems, but that can happen in any long-standing chronic illness. It doesn't mean however that one caused the other, or that they are the same illness.

    Please, for your own health, take some time to read, and maybe re-read the posts on this page (34) where myself, and others have tried to point out that ME/CFS is indeed very different from EDS. We aren't doing this to hurt anyone, or to discredit anyone, we're doing so to try and help.

    To help you, to help us, and to help everyone that is looking for answers with this very complicated and complex condition.
     
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  2. Allyson

    Allyson *****

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    Well i have certinly not made 18 500 hits on the post myself - my hits actually do not count in that score anyway as i starte the post; i did not raise that topic - someone else did , but i have mentioned it as to whether EDS is rlevant to ME

    evidently it has raised some interst when all the threads around it seem to nnuber in thier hundreds .

    again i ask , if there are over 100 threads on Lyme disease onthis forum,... how are they relevant to ME?

    Lyme disease is not ME.



    A
     
  3. Allyson

    Allyson *****

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    Also one of the authors of the International consesus document of 2011 has referred at least one ME patient to a gentics clinic for testing for EDS..

    A well known cardialogist who is treating OI/POTs in Melbourne at a major research centre has also taken a sample of vein from an ME/cfs patient's arm - for testing or reasearh i am not sure which.


    My point about the connective tissue being every where had no analogy to cancer.

    What I was indicating was that connective tissue consist of


    blood

    lymph

    cartildge and tendons

    muscle fascia

    pretty sure blood vessels - need to check this i have a post in the thread about it

    i think interstitial matrix - which i think is the area surrounding all the tissues


    adipose tissue

    and it is abundant in the gut and so has likely immune inolvement - this was explaindd to me by a med rpoefssionna l wh o had doe resarh on it but i have forgotten the specifics.
    so the fact that it is so widespread in the body makes it an ideal candidate for caushig the mulitplicity of symptoms of ME


    i will post more later

    Thanks evey one for the lovely birthday wishes. That was nice to wake up to.



    best

    ALLy
     
  4. Kina

    Kina Moderation Team Lead

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    Allyson. Your posts do count in that score -- every time you read the thread, it counts as a view.

    I have read this whole thread each time a new post pops up, so I have contributed over 600 views alone.

    There is a section for the post popular threads on the forum. These are categorized by the number of people posting on a thread, not by views -- http://forums.phoenixrising.me/index.php?find-popular/content
     
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  5. Allyson

    Allyson *****

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    anxiety and innsomnia

    thanks Janet for sending this

    yes i read that the way to distingush anxiety form this condition - with EDS standing up will provoke it as wll extreme heat - and it will resolve after they are resolved - ie if you lie down again or get cool .....so a cool bath will stops sympotms ; this is what distingushes it from paychological anxiety

    New info is not everyone with EDS is hypermobile though - a common misconcseption still.
    this is form 2010 so he still uses that terms intervhacgeably bu it is a useful article nonetheless


    "Ehlers-Danlos: Anxiety and Insomnia.


    The body’s tendency to overreact to stresses by making too much adrenaline can lead others to think that hypermobile people are “too sensitive,” “irritable,” or “anxious.” Patients themselves may notice this, saying, “I’ve always overreacted to little things. I can’t help it.” It is very important to recognize two things about this phenomenon. First, it is a physical reaction, so that counseling usually will not be effective in treating this type of anxiety. Similarly, adrenaline highs and lows may be mistaken for the mood fluctuations of bipolar disorder, but mood-stabilizing medications usually are not indicated. When medication is required, beta blockers, which block adrenaline, may be as effective with fewer side effects than SSRI’s like Prozac and Lexapro or benzodiazepines like Xanax and Valium. Second, while a feeling of anxiety can be produced by emotional stress, it is just as likely that such symptoms have a physical cause, most often fatigue, pain, or dehydration, and less commonly by a drop in blood sugar or blood pressure. Not surprisingly, researchers have found that anxiety and panic disorder are more common in hypermobile people.

    * Hypermobility and Sleep

    Similarly, when hypermobile people try to fall asleep, the stimulating effect of their extra adrenaline may keep them awake. If they are able to fall asleep, they may continue to make too much adrenaline overnight, giving them a shallow, dream-filled sleep, so that they wake feeling unrefreshed. Pain further stimulates adrenaline, making restful sleep even more difficult. When studied in the sleep lab, they often have a relative and sometimes complete lack of deep sleep, and/or an increased number of sleep-disrupting “arousals.” Poor sleep can cause irritability and fatigue, which in turn can trigger more adrenaline (to try to overcome the fatigue), which in turn can make sleep worse. This vicious cycle can eventually cause serious disability. Like fatigue and pain, many patients are not aware of just how bad their sleep is. Although some people are aware of waking often or of having frequent very vivid dreams, many will insist that they “sleep fine,” even while admitting that after sleeping 8 hours they don’t feel rested when they get up.

    Not sleeping well not only makes you tired and irritable and can affect your mood, it also affects mental functions like memory and concentration, and has recently been shown to be a major contributor to weight gain in some people. Besides treatment for sleep apnea and limb movements when these are present, medications specifically for hypermobility-related sleep problems are often helpful. As mentioned earlier, one possible explanation for the frequent arousals and lack of deep sleep is that patients are making too much adrenaline at night, just as they often are during the day. Some patients unfortunately seem to make too little during the day, waking tired and dragging through the day, only to get a “second wind” of energy (or a “first wind” for many!) at 9:00 or 10:00 at night, just as they are trying to wind down and get ready for bed. Heart rate monitors showing increased fluctuations in heart rate and occasional sudden increases in heart rate corresponding to arousals and awakenings lend support to this theory, as does the observation that medication to block or offset extra adrenaline helps many patients get a better night sleep. Adrenaline-blocking medications include various types of beta blockers, while medications like Valium and Ativan work partly by raising the levels of calming chemicals in the brain to offset the extra stimulating ones. Also, since chronic pain is so common in this patient group, appropriate pain medication at bedtime is often essential to achieving a restful night’s sleep.

    Alan G. Pocinki, MD
     
  6. Allyson

    Allyson *****

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    Hi Danny

    - thanks - you may not be trying to stop me form posting but others seem to be.

    You may not be trying to discredit me but another person is.


    I think fair debate is fine but personal, offensive and insulting comments are not - again i am in no way referring to you here or others engaged in honest argument.

    Again i repeat for those who do not understand that I am not saying that everyone with ME/cfs has EDS

    But some do - just as some have Lyme Disease - though until recently they thought they had ME/cfs

    No..... everything is known about any of these illnesses

    it has long been said that the term CFS encompasses many possible ilnesses with similar syptoms and we need to differentiate them; many are now being diagnosed with Lyme.

    EDS may be another similar sub-category - but not enough is known about either to establish that.

    My request here is that people consider it as a possibility and look at their symptoms in another way to see if it is possible.

    And that researchers look at it too - from both sides - the EDS and the ME side.

    Alas there is very little info - and especially accurate info - out there about EDS - none of the things my specialist told me have ever appeared on the web that i can find - medical research papers take well over a year for each paper to be published usually, then it takes time for people to read and digest and process and respond to the theses or evidence .....as in any academic field.

    I welcome helpful and constructive argument and realise that others disagree with my opinion - i have no problem with that and that others have differing symptoms and possibly even differing illnesses.

    I do ask that people keep on open mind and consider something before dismissing it outright


    thanks again for your time and input.

    Ally
     
  7. dannybex

    dannybex Senior Member

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    Allyson,

    No one has said you made 18,500 hits on this thread. I think a possible explanation might be because you keep adding more posts to it...often replying to your own posts, causes it to show up in the 'what's new' section. People may see it there, and see how long the thread is, so they click on it, perhaps thinking there must be something to this hypothesis...

    Yes, lyme disease is not ME. But because lyme, especially chronic lyme, is often not tested for by most primary care physicians, they get misdiagnosed as having CFS/ME...hence the many threads on lyme.

    Happy Birthday by the way!

    Dan
     
  8. Allyson

    Allyson *****

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    H

    Hi Danny


    thanks for the birthday wishes !

    The reaons i mention Lyme is that the point was made to me that this is an ME cfs forum we should not be discussing EDS on it

    My response is that Lyme is not me cfs either but there are over 100 threads on Lyme on this site - PR forums

    The analogy is that EDS is not looked tor either by most primary care physiscans EITHER when they diagnose ME/cfs - With some exceptions, Many doctors know nothing about it besides then name and that they have heard it is rare - it is not. (Until a few weeks ago doctors in Australia were actually forbidden to treat Lyme disease and its presence here was widely denied. The testingavainlabe for it here is still hugely inadequate and we have to send samples ofversease for testing)

    Or some diagnose EDS but think that means only hyperrmobility - when in fact if you check the EDS sites the people there complain of a huge range of symptoms. many that same as we see in ME/cfs

    such as but not limited to

    IBS
    reflux
    brain fog
    migraines
    allergies
    MCS
    joint and muscle pain
    TMJ and RSI
    skin sensitivity
    OI/POTS /NMH
    faintness and giddiness,
    severe jetlag,
    nausea and vomiting
    asthma etc etc


    best
    Ally
     
  9. dannybex

    dannybex Senior Member

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    Thanks for your kind words.

    I realize you're not saying that everyone w/ME/CFS has EDS. The problem is this thread is titled "Is ME due to Ehlers-Danlos Syndrome?" -- and the answer, which has been said several times about 20-25 pages ago -- is no.

    So with all due respect, I don't understand the need to continue adding to the thread with more posts that are sometimes not even related to EDS. You're repeating yourself over and over and over, and did again just a moment ago with the list of EDS symptoms. You've given people plenty of information to consider as it is, so they can come to their own conclusions.

    Take care and enjoy your birthday!
     
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  10. Allyson

    Allyson *****

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    Dear Danny

    the title is in the form of question ??? IS

    If you think you know the answer - lovely, I am happy for you.

    No need for you to keep reading then if you are happy that you know the anwer!

    I am sure you have other topics of interest too.

    Where did you do your universtiy medical studies BTW?

    I repeated the list of some overlapping symptoms because you do not seem to get it that so many of the EDS sympotms are the same as many with ME have. This was how the connection to LYme disease was made some time ago - symptom overlap; and the same MAY happen with EDS - i do not know but would like to discuss it in an intelligent and informed environment such as this forum usually is.

    Evidently we disagree - you think the answer is no ; i think the answer is that we do not know .

    Where i come informed discussion and research is usual before dismissing any potentially important topic out of hand or with a totally unsubstantiated one word negation.


    Thanks indeed for your input but I feel we are going round in circles now which is not very constructive .

    unquote

    Also last time i looked this site awarded trophys for posting...and the members page has on honour board up of the 12 highest- posting members .So not sure why it is then that you seem to want to limit my posts.

    Finally, if you are a site moderator , then i am happy to listen to your opinions on what is posted here ... if not then, thanks for your opinions but you are overstepping the line in telling another member what they may or may not post.



    thank you for your time!

    Ally
     
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Allyson

    This forum is a community and each member has a responsibility to try to preserve its integrity to the best of his or her ability. I have known dannybex for many years--years before this forum was formed. Danny has always been one of the kindest, most polite members of every forum he has belonged to. He is continuing to do that on this thread.

    Some of us are reading and posting on this thread to try, by our own lights, to keep integrity in the forum. This means that if a point of view is expressed that we think is misleading or not correct, we will respond and present another point of view. This is not to attack any point of view but to keep a balance in the discussion.

    I personally am not reading and posting on this thread because I have any doubts about the answer to the title of the thread. I disagree with the premise and don't feel it would be responsible to let some statements to go unchallenged. The more often you repeat the same information the more often someone will respond to give a balance.

    This isn't very productive! I think this is what Danny was saying. You have presented your point of view and the data that you think is relevant and repeating it just waters it down.

    If you find new information or articles that you think bring something new to the discussion--great! Otherwise we will keep going in circles--a waste of time and energy for all.

    Best,
    Sushi
     
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  12. Allyson

    Allyson *****

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    thanks for this one too Janet - 2013 date is always good news that research is happening

    i have wrist ganglions - goth wrist an di have read thy are symptom too

    my first cousin was born with a crippling disease called arthrogyroposis (genetic form) - he has been in a wheel chair all his life and apparently that is genetically related to EDS.
    I have read about but found litte info to cate on a musculocontrcural type of EDS
    While many wih EDS are hyperflexible, some are, by ocntrast it seems, very stiff in the joints and muscles
    Not sure why - guessing may be the fact that muscel fascia is connective tissue and may be affected is a possibliity

    Palmoplantar contractures in childhood: a rare complication of vascular Ehlers-Danlos syndrome.

    Foulkes AC, Pollitt R, Sobey G, Pope FM, Taylor AE.

    Source
    ...
    Department of Dermatology, Royal Victoria Infirmary, Newcastle upon Tyne, UK.

    Abstract

    Although catastrophic vascular complications in vascular Ehlers-Danlos Syndrome (EDS) are well recognized, other complications such as flexion contractures and tendon nodules are rarely reported and poorly characterized. We report a young man with vascular EDS, who developed flexion contractures and tendon nodules, causing considerable disability. Limited management strategies are available for these complications, which have continued to prove a challenge to management.

    © The Author(s) CED © 2013 British Association of Dermatologists.



    A
     
  13. Allyson

    Allyson *****

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    One paper that supports a possible link between EDS and CFS John Hopkins Uni Chronnc fatigue syndrome clinic and genetics clinic.


    the anti shock trouser they mention at the bottom are comprssion clothing - inlatet to exeert pressure on the legs to improve venous return.
    Bold in text is mine


    Chronic Fatigue Often Paired With Ehlers-Danlos Syndrome
    Bruce Jancin, Denver Bureau
    [Pediatric News 33(3):40, 1999. © 1999 International Medical News Group.]
    Denver -- Chronic fatigue syndrome appears to be common among patients with Ehlers-Danlos syndrome, a connective tissue disorder characterized by joint hypermobility, hyperelastic skin, and connective tissue fragility.

    Orthostatic intolerance is seen in both conditions, presumably because connective tissue abnormalities predispose to excessive venous pooling during upright posture. This explanation makes the observed association biologically plausible, Dr. Michael T. Geraghty said at the annual meeting of the American Society of Human Genetics.

    According to other investigators, as many as one in nine people may have a mild variant of the connective tissue disorder. Other manifestations of the disorder may include acrocyanosis when limbs are in a dependent position, wide papyraceous scarring over bony prominences, ocular lesions, easy bruisability, and other vascular abnormalities.

    It's too early to say how often the two conditions coexist, however, said Dr. Geraghty of Johns Hopkins University, Baltimore.

    Dual-diagnosis patients may obtain symptomatic improvement using medications that address orthostatic intolerance by reducing venous pooling. Moreover, establishing the diagnosis of Ehlers-Danlos syndrome has added benefits, including a heightened awareness of potentially serious complications, improved detection of affected relatives, and avoidance of unnecessary diagnostic and surgical procedures.


    Dr. Geraghty reported on 10 patients averaging 16 years of age who were evaluated both in the Hopkins chronic fatigue syndrome clinic and the genetics clinic. All met prevailing diagnostic criteria for both disorders. Diagnosis of chronic fatigue syndrome preceded that of Ehlers-Danlos by a median of 42 months in 9 of 10 patients.

    The medical literature has historically underemphasized the easy fatiguability of patients with Ehlers-Danlos, as well as their common complaints of widespread muscle and joint pain. Indeed, all 10 patients in this series complained of varying degrees of pelvic, joint, and limb pain in the absence of articular swelling or erythema. Nine had a history of recurrent joint dislocations, requiring surgery in three cases, Dr. Geraghty noted.

    All patients had abnormal results on orthostatic testing. Based upon the results of an upright tilt-table test or a 10-minute standing test, eight patients had postural tachycardia syndrome, six had neurally mediated hypotension, and four had both.

    Several prior studies in patients with chronic fatigue syndrome have shown application of military antishock trousers results in symptomatic improvement, with prevention of orthostatic tachycardia and hypotension. It's logical that symptoms of chronic fatigue and orthostatic intolerance in patients with Ehlers-Danlos syndrome might respond to vasoconstrictors that reduce gravitational venous pooling, but this hypothesis awaits testing in randomized, controlled trials.

    Before using these agents in patients with Ehlers-Danlos syndrome, however, the presence of an enlarged aortic root should be ruled out. It's not a common abnormality -- it was present in 1 of 10 patients in this series -- but it predisposes to a feared complication of the connective tissue disorder: dissecting aortic aneurysm, he said.


    A
     
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  14. Valentijn

    Valentijn Activity Level: 3

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    Often an answer is implied in the manner in which a question is "asked". I'm reminded of Cartman in the Smurfberry episode of Southpark, as an example :D Additionally, instead of asking for information, you have spent the entire thread trying to persuade everyone of one answer to that question. In addition, you have become increasing rude and dismissive toward anyone disagreeing with your stance - if you merely wanted answers, or ever open discussion, that would not be the case.

    Yes, this is a good example of attacking anyone making contrary opinions.

    By repeating things repeatedly, all information ends up buried in spam. And if you do want to discuss it, please stop suggesting that people go away if they already have an opinion (which is contrary to yours).

    Is ME EDS? There is only one rational answer, and that is "no". Can EDS influence the development of ME? Now that is quite possible, and no one really does know how the two separate conditions might interact - are people with EDS at greater risk of ME? Does ME itself cause a connective tissue disorder that mimics EDS? Is EDS often misdiagnosed as ME, or vice-versa? Those are interesting questions which do not already have an answer.

    No one here is saying that EDS is not an interesting or relevant topic. Just as with Lyme disease, there may be some relationship between it and ME. But people discussing a topic does not mean that your hypothesis is necessarily correct.

    No one wants to limit your posts - I don't think anyone is particularly bothered if you keep spamming the EDS thread to win a trophy or get lots of people reading (and re-reading) it.
    No one is telling you not to post about EDS. But it is very disruptive when someone makes a thread about an unrelated line of research, then you jump in to say how the symptoms of ME or FM or whatever sound just like EDS, and direct people to this thread. It derails threads and distracts from the subject matter. It also makes otherwise scientific threads look somewhat dodgy if everyone chips in with their unrelated pet theory about what ME really is. It makes relevant information harder to find - if a thread is labeled as being about fibromylagia, someone looking for fibromyalgia information is going to be disappointed and confused if they end up reading about Lyme or EDS instead.

    What I'm saying is that 1) EDS is a good thing to talk about, but 2) it needs to be done on EDS specific threads without hijacking other threads, and 3) people ARE going to disagree with you. If you don't want discussion, but just want to "inform", using your forum blog would be more appropriate.
     
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  15. dannybex

    dannybex Senior Member

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    The understatement of the year.
    First of all, if others are indeed interested elsewhere, then why not continue posting over where people are interested instead of reposting their posts HERE? Do they know you're reposting their comments on this board? Do you have their permission. Don't bother answering...those are just rhetorical questions. Nevertheless I don't get it...it doesn't make sense to me.

    As for your second comment, it seems a little hypocritical of you to complain of others insulting you, when you do the same to myself. I certainly don't "know it all", nor have I ever claimed to, or ever would assert such an absurd claim. You're better than that Allyson.

    Where have I asked you to limit your posts? All I've and others have said is that you're repeating the same information over and over. I've also tried in vain to help you understand that this obsession of yours may not be helpful for your own health.

    I'm not a site moderator...I wouldn't wish that job on my worst enemy. I'd ask you to point out specifically where I've told you what you may or may not post, but I know I haven't asked that, so I'll let it go. I was truly just trying to help, but now, I'm worn out trying.

    I give up.
     
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  16. Allyson

    Allyson *****

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    Well yes they are actually Sushi - one is a co -author of the 2011 International consensus criteria who runs a speicalise me/cfs clinic and has done for decades; another recently was invited to speak at an ME/cfs Australia conference ......sharing the platform with 2 of the co- authors of the 2011 International consensus criteria.

    He is also a POTS /Oi and NMH specialist and expert and a professor of medicein who treats thousands of patients a year with this condition.

    The Dr who took the vein sample from an ME patient for pathology testing/research is also a POTS /OI /NMH spcialist at another of Australias top research institutes.

    I am happy to PM names to you as i do like to back up my statements and provide evidnece when requested (unless i state that they are my own speculation).


    cheers,

    Ally
     
  17. Shell

    Shell Senior Member

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    Perhaps as more is learned about genetics and genetic predispositions we will get a clearer understanding of if/how EDS and ME might/might not be related.
    For quite a lot of things the doc asks "Anyone in the family have...?"
    There's a lot of anecdotal evidence that ME and the autistic disorders could be linked as many ME parents have at least one child somewhere on the spectrum.
    The same may prove true about EDS in whatever form.
    We just don't know yet do we?
    What we know about dysautonomic illness is pretty scrappy too but lots of us have at least one dx that is related to a busted ANS.
    I have found what Allyson and others have posted interesting. I've missed a lot 'cuz I'm struggling to get on top of yukkiness right now, but what I've seen looks interesting.
    Will it answer the question of ME being "caused" or "linked" or even a result of ME? I doubt it because know so little about both ME and all the EDS flavours so far.

    As I have two daughters with gorlin's sign and a son who is blind in one eye and a daughter who has been seriously ill with undx gut probs and another son with type 1 diabetes I am interested in the genetic side of things; EDS, autoimmune, whatever.

    We don't have many answers but it's still interesting to see different POVs. from reading different research or knowing people who have truck loads of good experience. In fact I sometimes, well ok, OFTEN, think we can learn more from a coal face worker than a research paper.

    Oh and HAPPY BIRTHDAY ALLYSON :balloons:
     
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  18. Kina

    Kina Moderation Team Lead

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    Perhaps looking at diagnostic criteria in this case would be helpful.

    Most conditions/illnesses/diseases have major and minor diagnostic criteria.

    For a clinical diagnosis to be made for any illness/condition/disease, major criteria must be met. In the absence of major criteria, any minor criteria that may be present are not sufficient to establish a diagnosis. The presence of minor criteria might suggest an illness/condition/disease but also at the same time could point to many other diagnoses. The presence of minor criteria can lead to more testing or to a misdiagnosis if a doctor fails to consider the proper diagnostic tests.

    The major diagnostic criteria for ME and EDS are very different.

    For Ehlers-Danlos which contains six individually recognized phenotypes, one can readily see from available research that joint hypermobility, skin hyperextensibility and tissue fragility are the major criteria. These criteria aren't even minor criteria that are associated with ME. ME is not a collagen disorder.

    EDS has a distinct genetic basis, ME does not. If ME does have a genetic basis, it doesn't mean it is any way related to EDS. So far, there has been no evidence (that I know of) that has shown ME to be related to genetic abnormalities involving collagen.

    In one has the major criteria for both EDS and ME, the answer would then be that the person has both ME and EDS. From what I can see at times on this thread, minor criteria that are associated EDS and overlap with ME are being used to make statements that ME are one and the same.

    If the title of this thread is indeed a question, then the answer is no, ME is not due to EDS. They are distinct from each other clinically. The major diagnostic criteria are not even related. Minor diagnostic criteria seem to overlap which is common in many illnesses/conditions/diseases. It is possible to have both at once. It is possible to be misdiagnosed. It is readily apparent that the two are distinct clinical entities.

    In the first post on this thread, Allyson said:

    I believe after a very long thread, that we agree that some symptoms overlap. We agree that EDS and ME are not the same disease and it's obvious that some have both ME and EDS.
     
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  19. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Re: doctors and researchers you have mentioned:

    Yes, you referenced Dr. Don Lewis, one of the authors of the International Criteria, but what you quoted had nothing to do with EDS:

    Most ME researchers would indeed hypothesize that there might be genetic predispositions that play a factor in the manifestation of ME--genetic factors are related to most aspects of health--but that is a long way from saying that ME is a genetic disease which is the same as EDS.

    Sushi
     
  20. Allyson

    Allyson *****

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    I am afraid this is QUITE incorrect information you have read Kina

    there are at least 10 classification of EDS and skin hyperextensibility and joint hypermobiliity are features of EDS Type 3 - not of the other types.

    The categories are currently under review as more research is undertaken

    In the musculo - contractural type of EDS for example you have the total antithesis of hypermoblitiy - joint and muscle stiffness.

    As connective tissue is affected in different ways the manifestations also vary from person to person.

    I would be interested to see sources when you are citing research as there are not many available.

    thanks for the input.

    Ally
     

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