1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Science to Patients: Talking ME, Exercise and the Mitochondria - with Dr Charles Shepherd
The latest video release from the Dutch group ME/cvs Vereniging, with Dr Charles Shepherd from the UK ME Association, and announcing a live chat session to be held Thursday, April 10, 2014...
Discuss the article on the Forums.

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

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

  1. MishMash

    MishMash *****

    Messages:
    446
    Likes:
    477
    Georgia
    Nobody has taken further interest in Rowe's hypothesis. So we have no research about the connection between EDS and ME/CFS. I know when I took the tilt table test, and was strongly positive, the first thing I thought was "okay, so now what?" There isn't much that can be done for a genetic predisposition. For me, it was much more hopeful to look for a virus or germ that could be killed.
    Allyson likes this.
  2. Allyson

    Allyson Senior Member

    Messages:
    1,683
    Likes:
    665
    Australia, Melbourne
    Thanks Mish mash and well said !

    i would only add that I am not claiming it IS the cause of the illness of everyone on this site or everyone diagnosed with ME/cfs.

    I am saying that it seems highly plausible for me and since it has taken me over 25 years to realise that EDS could cause my illness (and it is the only thing that has given any logical explanation for the bulk of my symptoms) I am putting out a call here to see if it applies to anyone else as well, and asking people to observe what really causes their crashes...could it be from jist being upright???

    Until it was pointed out to me I never made the correlation; now I am certain it is a strong one and all the logical management strategies the theory entails seem to help me.

    I have no vested interest in it being right but I think once we finally identify a cause (even if it is only for some of us) we can then look towards treating that cause.

    I re-iterate Mish mash's statement that connective tissue disorder is highly complex .and agree that alas, there is no reliable test. However once we know what we want to test for that could become easier.... for example controlled randomised studies where some subjects stay horizontal for several weeks and engage in other activities and diets while others get vertical.

    Connective tissue disorder also explains the joint pains and IBS and possible csf leaks from weak meninges which tear and possibly contribute to brain fog.

    I also think we do not want to dismiss it as a theory without testing it out. (Nothing else has been proved.)
    MishMash likes this.
  3. ahimsa

    ahimsa Senior Member

    Messages:
    1,001
    Likes:
    804
    Oregon, USA
    I completely agree that people with an ME or CFS diagnosis should look into whether standing (or sitting upright, hot showers, and so on) causes a crash. Since you have symptoms that come on after standing then I'm actually quite surprised (and saddened :( ) that for 25 years none of your doctors considered some kind of Orthostatic Intolerance (OI) as a possibility. It's terrible that doctors know so little about OI.

    Many patients reading this forum already know about problems with being upright. Quite a few have a diagnosis of either NMH or POTS. They are already treating these problems with drugs, avoiding NMH/POTS triggers, and so on. There's even a forum section called "Problems Standing: Orthostatic Intolerance."

    It's pretty well known that many ME/CFS patients have OI. The first research study on this connection was published back in 1995.

    [Whether OI is co-morbid with ME, or an integral part of the illness, is a more complicated discussion. But there's no question that OI is there in many patients. This has been known for years.]

    What I'm trying to figure out is where EDS fits in to the picture.

    If a patient already knows about problems with standing, and already has a diagnosis of OI (whether it's NMH or POTS or both), then what information is added if they get an EDS diagnosis?

    I'm not saying that an EDS diagnosis is useless information! Please don't think that. I'm just trying to figure out what the patient should do with the new information.

    Let's take my own situation. I have had a diagnosis of NMH since 1995. I'm already treating my OI with a combination of prescription drugs (fludrocortisone, midodrine, potassium), extra salt and water, and lifestyle changes (avoiding standing and heat, sitting down in the shower, resting with my feet up after meals to avoid splanchnic pooling, etc.).

    Now, let's say that I get a new diagnosis of EDS on top of the ME and OI. How would this new diagnosis of EDS change my treatment protocol for my problems with OI? I'm already taking a vasoconstrictor (midodrine) to help keep my blood pressure from dropping. Are there other ways to treat the "stretchy veins" in addition to vasoconstrictors?

    In theory, I understand how treatment for OI might change if it were discovered that the cause of OI was an infection or mitochondria dysfunction. What I don't understand is how the treatment protocol for OI would change if the patient learned that it was caused EDS. Are there prescription drugs, for example, that are meant for EDS patients?

    I'm probably missing something obvious because I know so very little about EDS. :confused: And what I know about OI is probably not all that much, either. :rolleyes:

    Thanks!
    Allyson and camas like this.
  4. ahimsa

    ahimsa Senior Member

    Messages:
    1,001
    Likes:
    804
    Oregon, USA
    I just found this newsletter (Dysautonomia News Winter 2003) that talks about EDS in patients with Orthostatic Intolerance. I have not read it yet, just skimmed it, but thought I'd share it here:

    http://www.dinet.org/images/newsletter2.pdf
    Sing and Allyson like this.
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,041
    Likes:
    4,586
    Albuquerque
    ahimsa

    I also have NMH but also EDs III.

    Here is how the EDs diagnosis helps me. I know I shouldn't overstretch even though it feels good (no yoga for me); I know I need to strengthen core muscles to compensate for unstable connective tissue (Pilates done lying down with machines helps me with this); I know I need to be careful of structural issues and get therapy if something gets "out of place"--an osteopath helps with this.

    I've also received prolotherapy to strengthen loose tendons (ligaments?) around my knees.

    But, yes, the genetics are still there.

    Sushi
    ahimsa and Allyson like this.
  6. Allyson

    Allyson Senior Member

    Messages:
    1,683
    Likes:
    665
    Australia, Melbourne
    Thanks Sushi, that is helpful info for me.
    my EDS diagnosis is new so I am still coming to terms with what it means
    I suppose I would reiterate that if EDS turns out to be the cause then we can start looking for cures, something you cannot do until you know the cause.
    If the cause is genetic we could look at genetic research to test for the presence of the gene - for accurate diagnosis- and also look at gene targeted therapy which is a new but promising field. Eg at the Florey Iinstitue here in Melbourne they have developed a drug to treat ventricular fibrillation using gene based therapy. (I think that is the correct term ... I just heard it on the news the other day.)
  7. Allyson

    Allyson Senior Member

    Messages:
    1,683
    Likes:
    665
    Australia, Melbourne
    Thank you so myuch Ahimsa, that article is the best info I have yet found on EDS
    I will read it properly now and circulate it too.
    Cheers
    Ally
  8. Allyson

    Allyson Senior Member

    Messages:
    1,683
    Likes:
    665
    Australia, Melbourne
    Looks fantastic on further reading; I love the explanation for why walkig up a flight of stairs causes symptoms.
    First time I have seen any lit on this.
    I will try and subscribe to it
    Thanks again Ahimsa
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,041
    Likes:
    4,586
    Albuquerque
    For me, I am 100% sure that EDs and ME are not synonymous.

    I have many viruses, infections, immune and gut dysfunction....on and on--besides OI and EDs. My OI improves whenever I make strides treating the immune system and pathogens.

    Best wishes,
    Sushi
    ahimsa likes this.
  10. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,235
    Likes:
    1,581
    London
    I think it is absolutly brilliant Allyson, that you have finally after 25 years found a diagnosis that fits your symptoms.

    The original ME or CFS diagnosis (and I can't see if you ever knew which criteria was used to diagnose you) is therefore a misdiagnosis.

    EDS either fits all your symptoms or doesn't. The ones that it doesn't fit could be another co-morbid disease. Having one disease doesn't rule out having another.

    If the doctor who originally diagnosed you didn't know about EDS, or POTS or OI in ME and CFS patients then s/he has led you down the wrong track all these years. I'd be really annoyed if that happened to me. My ME and CFS doctor was up with the literature and know of the original papers on CFS patients and was testing blood pressure/HR variations as best as he could soon after.

    You may wish to go back to your original doctor or altert the local health authority in your area if as misdiagnosis was made through a doctors ignorance. It would maybe help someone else going through the same thing.
    ahimsa likes this.
  11. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,235
    Likes:
    1,581
    London
    Mishmash,

    You need to go back and read about the original ME outbreaks all through the 20th Century if you want to try and explain them away using EDS. The most famous outbreak in the UK was the Royal Free Hospital where a lot of the medical staff were hit and many of these people are still alive today.

    When you talk about "people on this site" we all have different diagnoses using different diagnosic criteria. The "people on this site" can have ME, CFS, CFS and other diagnoses. We are not a homogeneous group. Some will have been diagnosed with a criteria that doesn't look at the right exclusions and they will have been misdiagnosed. Dr Hyde writes quite well on this. The UK group ME Research wrote about this recently.

    Very few patients here will have an actual ME diagnosis by a doctor with an experience in the disease and when I talk about ME I am refering to ME as originally described by Dr Ramsay and the others who investigated the outbreaks. The one that the WHO registered. EDS doesn't occur in epidemics (as far as I am aware) so it can't be the same as classic ME. Very few patients on this forum would have been diagnosed with classic ME, most as diagnosed with CFS.

    Very little research has been carried out to see if theseoriginal ME patients are the same as any of the CFS patients or any other. We don't even know if the new attempts to define ME will be the same.

    I'm a splitter and not a lumper and will be until we see some research and evidence that marries together these groups.

    Using ME to refer to CFS patients or even CF patients (as sometimes happens in the UK) and using ME in this thread isn't going to lead us anywhere useful if we are talking about a CFS misdiagnosis in Allyson.

    Also if Allyson's doctors are using ME when they are really talking about CFS or even CF then that needs to be clear.Just parroting what they are saying does a dis-service to genuine ME patients because EDS doesn't cover their symptoms. If a doctor said that to me I'd challenge him and expose an ignorance about ME.

    If Allyson was diagnosed with a criteria of ME or CFS that didn't involve looking at POTS/EDS etc then we need to be clear.

    Carrying on with a criteria that doesn't define a patient group well enough gets us no where.

    Allyson being misdiagnosed with ME or CFS for such a long time isn't useful to her. If other patients are being diagnosed with ME, CFS or CF and EDS would cover all of their symptoms then it needs to be investigated as an exclusion as part of the criteria they are dx'ed with.
    ahimsa likes this.
  12. ahimsa

    ahimsa Senior Member

    Messages:
    1,001
    Likes:
    804
    Oregon, USA
    :) I'm glad it was helpful.:) I should mention, though, that the newsletter itself is primarily about dysautonomia (dinet.org) and only part of it is about EDS. For example, the part about going upstairs, by Dr. Grubb, is not about EDS.

    Sushi,

    Thanks for posting about how your EDS diagnosis helps you on a practical level. I like your idea about doing Pilates while lying down. I do a few very simple exercises (e.g., lie flat on the floor with my knees bent and push my back to the floor) just to try to strengthen the core muscles. I spend so much time sitting that I think I need to try to strengthen my lower back and abdominal muscles.

    All this stuff about EDS is not only new it's also quite confusing. One thing that does not fit for me is that my illness came on fairly suddenly (although not overnight like some people).

    I had a bad virus in late Dec. of 1989. By early January 1990 I thought I'd recovered, went back to work, exercise, lifting weights, and so on. Then over the course of two months I progressed from feeling a bit dizzy and lightheaded to taking lots of sick days. I had to go on full medical leave by early March 1990. Then lots of ups and downs after that.

    If I was born with EDS, and that is the primary cause of my OI, then what caused the sudden onset? I was healthy as a horse (working 50-60 hours a week at a job that I loved, weight lifting and stairmaster at the gym, 5 mile hikes with >1500 foot elevation gain, and so on) for the first 29 years of my life. Then within only two months I had trouble walking across the room. ( deconditioning does not set in that quickly) Even if EDS turns out to be a part of my problem there's got to be some factor in addition to that.

    Anyway, it's all very puzzling to me.

    Here's one more link about EDS that I just found, notes taken by a patient who attended some sort of conference in 2011:

    https://www.edsers.com/2011_Conference_Notes.html

    Now I have to get off the computer and rest. Even though I'm using the laptop in the recliner, with my feet up, I still need to make sure I don't overdo it. :rolleyes:
    Allyson likes this.
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,041
    Likes:
    4,586
    Albuquerque
    ahimsa


    That is my situation--born with EDs, "got" ME much later. I don't think EDs is the primary cause of my OI cause EDs is a constant and different protocols greatly affect my OI (not talking about drugs and fluid and salt loading--talking about protocols that go after pathogens, HPA function, heavy metals, methylation, etc.)

    My worst years of ME also came on within a few days--obviously not genetic--but suddenly I couldn't walk across the room.

    Best,
    Sushi
    ahimsa and Allyson like this.
  14. Allyson

    Allyson Senior Member

    Messages:
    1,683
    Likes:
    665
    Australia, Melbourne
    Sushi I am no expert in Eds at all. But I also thought I was perfectly well til I was 26.
    then i collapsed one day
    and I had bad " jet lag" lasting 2 weeks ...not sure now which happened first but until the jet lag incident I used to drjnk strong cofeee all day long..... so that may have masked symptoms.

    I worked full time but left any job where I was still or standing within a couple of months ... unconscious choice perhaps to move it or lose it.
    MishMash likes this.
  15. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,041
    Likes:
    4,586
    Albuquerque
    Since coffee vasoconstricts, that could make OI less obvious. But I only had extremely mild OI till I got ME. As a teenager, I remember that if I got up too quickly I'd grey out for a minute, but other than that, not much till ME. But I did have EDs symptoms--hypermobility, stretch marks, the typical body proportions, etc, from childhood.

    Sushi
    ahimsa, Allyson and MishMash like this.
  16. MishMash

    MishMash *****

    Messages:
    446
    Likes:
    477
    Georgia
    It just seems so obvious to me now-- so many of us insist we were healthy, professional, intelligent, functioning people, until we got a flu virus. Or had a bad case of jet lag, or had a bad surgery, or had an emotional collapse, or or or... There is no commonallity of initiating injury. Very few of us were sickened in epidemics. I have Q-virus in my veins (a virus from being around cattle) but I'm never going to take antibotics because I know it is just a fellow traveler, along with reactivated EBV. It would be like beating a shadow with a stick.

    But there is a big subset of us who were born with weak connective tissue. This weakness only became an issue after we underwent some trauma, which probably further weakened the connective tissues. Cortisol, inflammatory hormones weaken tissue barriers. The stretchy veins possibly become even stretchier. The gut and blood brain barrier even more permeable. The fact someone had an "initiating illness" doesn't mean the illness caused the chronic illness. Well-meaning infectious diseases specialist have tried to put us in that box. The enemy is our own bodies.
    Allyson and merylg like this.
  17. MishMash

    MishMash *****

    Messages:
    446
    Likes:
    477
    Georgia
    Allyson,

    I never thought about the possibility of CSF leaks. But I think it is true.


    Eur J Hum Genet. 2012 Aug 29. doi: 10.1038/ejhg.2012.191. [Epub ahead of print]
    Connective tissue spectrum abnormalities associated with spontaneous cerebrospinal fluid leaks: a prospective study.


    Allyson and merylg like this.
  18. MishMash

    MishMash *****

    Messages:
    446
    Likes:
    477
    Georgia
    Since nobody, either in the US or in the UK, has the slightest clue about the etiology of either ME or CFS, they are the same condition as far as I am concerned. And I thought ME was chosen because it was less offensive than CFS? I didn't realize there was proven "brain inflammation" in ME. I just assumed it was an educated guess.

    There have only been three known ME or CFS epidemics; yet there are millions of patients. 99.9% of patients did not get sick in epidemics. Why is that the case? I'm skeptical of the transmissible origin of ME/CFS, that's all.

    CFS is definitely a disease of exclusion. But doctors, so far, have not considered the mistake of excluding EDS or weak connective tissue as a predisposing factor. That is the whole point of Allyson's thread. She has found the missing link. So far it is the only compelling hypothesis I have come across in 30 years of being sick.
    Allyson and merylg like this.
  19. Allyson

    Allyson Senior Member

    Messages:
    1,683
    Likes:
    665
    Australia, Melbourne
    Not only does coffee vasoconstrict, Sushi it is also a powerful stimulant that will cause you to ignore body signals to rest or lie down; it is only a recent thing that people drink water all the time in some of our lifetimes. It was the norm to drink coffee or tea all the time until the health kick of about 1995 onward??? not sure of exact date, when people started drinking water all the time and carrying water bottles. Before that if you wer hom eyou put hte kettle on for tea or coffe and if you wer out you bought one ... or some would drink stimulating soft drinks too.
    I remeber when I visited Darwin (a smaller town) in about 2005 people thought I was strange for carrying a water bottle with me - when in Melbourne that was then considered normal.
  20. Allyson

    Allyson Senior Member

    Messages:
    1,683
    Likes:
    665
    Australia, Melbourne
    Wow thanks for that Mish Mash. csf leaks would explain my mild but frequent headaches. Waiting fo the result of my MRI with contrast to see if I have leaks.
    THey would also perhaps expain brain fog and the reason why crashes are delayed sometimes byu a day or two.

See more popular forum discussions.

Share This Page