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

[Allyson]

Hey I was just reading this article that was posted on facebook which I thought you might be interested in. EDS is mentioned about 2/3 down.

thanks Sherrie very much - hot off the press and interesting; i have reposted the links you sent here for others to access/copy both together.

new research - 25. Jan, 2013 - from Prof Peter Rowe at John Hopkins Uni

HE mentions EDS /OI half way down one paper

http://www.research1st.com/2013/01/25/manual-therapy-1-of-2/

http://www.research1st.com/2013/02/01/manual-therapy-2-of-2/

 

[Allyson]

Allyson,


(quote)
From pain to brain fog
Bell hypothesized at that time that the low blood volume could help account for the prevalence of "orthostatic intolerance" - worsened symptoms, from pain to "brain fog" - among PWCs, because the limited amount of blood would tend to pool in the legs and feet, that common feeling of unbearable gravity and of wearing lead boots, with a corresponding drop in the amount of blood available to the brain. Other researchers' work has added to the evidence that this is a core problem in CFIDS, including reduced cerebral blood flow on SPECT scans, while some, like the Johns Hopkins group, have demonstrated neurally mediated hypotension on tilt-table testing (changes in posture).
(end)

(quote)
In fact, the blood vessels in CFIDS seem to be constricted dramatically, and yet attempts to restore normal blood volume (through use of Florinef, salt, saline injections, transfusions) have met with only limited success so far. "All of the body's normal mechanisms to restore blood [when it is lost in other ways] seem to be turned off." It is as if the CFIDS body <wants> to have low blood volume and that its blood vessels want to stay constricted. Bell likens the blood vessels to water pipes that are only half the proper diameter - you simply cannot make a metal pipe hold any more fluid than the pipe is built to carry

and he is also interested in norepinephrine

(quote)
"It could be," Bell said, "that a physiological mishandling of norepinephrine ('norepinephrine transport'), for different reasons in CFIDS than in this exceedingly rare genetic condition, plays a role in both conditions."

http://www.anapsid.org/cnd/diagnosis/oi.html

Oh i missed this paper ealier sorry - I just read it -it is really useful thanks xrmv, I have forwarded it to my doc too.
thanks again
Ally

 

[Allyson]

Sorry I have not read this entire thread so don't know if this has been mentioned but BV regulation is an HPA function, and might very well be downstream of a primary HPA dysregulation problem, particularly problems with the hypothalamus.

I have serious problems with low BV symptoms, OI, etc, and treat that successfully with a few natural supplements. The theory I am following is that most CFS patients have ACE Deletion SNP and as a result do not regulate sodium properly when the hypothalamus is under stress (we dehydrate when we have sickness or stress). This however can be at least partly treated with bioflavonoids as they inhibit angiotensin-mediated blood vessel contraction. In other words, something as simple as Ester-C (which supports the adrenals and also contains bioflavonoids) and Cinnamon (a powerful blood vessel relaxant) can support increased BV. But this only works if you are also improving the sodium levels, so oral rehydration is important. I have written up a protocol I am following and am happy to email to anyone with CFS.

Credit goes to the late Rich VanK for the discovery that most CFS patients have the ACE deletion, that was the strongest single SNP problem in an early study he shared of his methylation protocol.

thanks for thIs Kurt (and to Rich) . I wonder does magnesium fit in too as most of us benetfit from it and i saw this very interesting link on it on the EDS page

http://www.ednf.org/images/stories/pdfs_medical/2013/MAGNESIUM_AND_EDS_PART_2.pdf

 

[kurt]

thanks for thIs Kurt (and to Rich) . I wonder does magnesium fit in too as most of us benetfit from it and i saw this very interesting link on it on the EDS page

http://www.ednf.org/images/stories/pdfs_medical/2013/MAGNESIUM_AND_EDS_PART_2.pdf

Yes, magnesium plays a role in the angiotensin-renin system. Interesting comment, I have used magnesium for years also and had not connected it with the ACE deletion problem. But just found this:

http://www.ncbi.nlm.nih.gov/pubmed/8228558

That study found that magnesium lowered aldosterone levels in a given patient group, which could theoretically lower sodium retention. That would logically lead to lower blood pressure and lower blood volume. So that might explain the relaxing effect of magnesium, if that were the only function of magnesium anyway. But there are so many reactions involving magnesium and so many feed-back loops in this biochemistry, that the total effect of the magnesium might be counter-intuitive. So there might be other explanations for the effects of magnesium.

For example, magnesium is also important in the methylation cycle, so that might also explain part of its positive effects for so many of us. Also, some infections (such as spirochetes) use magnesium for replication rather than iron , and thus with some chronic infections magnesium gets depleted.

 

[dannybex]

That's interesting Kurt. When I had hair mineral analysis done, that's one of the things they said...that magnesium lowers sodium. I suppose it all depends on other minerals/electrolytes as well...

 

[Allyson]

I phoned the genetics dept at Royal melbourne hospital ( australia) and they have a connective tissue disorder section that covers EDS and other CTDs
it is free
you need a GP referral
RMH is one of Australia's best hospitals for medical research IMHO
they sounded very nice and approachable
I will post updates

 

[Allyson]

Allyson ....

I have had OTs/PTs tell me I am hypermobile in spots, causing some of the spine pain probably. I am short tho and don't look like classic EDS person.

I phoned the genetics dept at Royal melbourne hospital ( australia) and they have a connective tissue disorder section that covers EDS and other CTDs

there is no chrge but you need a GP referral

RMH is one of Australia's best hospitals for medical research IMHO
they sounded very nice and approachable
will be good to sort things out or see where the research is up to
or evven just to let them know we are out there !
I will post updates

 

[Allyson]

I never knew how 'slouchy' it looked until I saw myself in pictures-- looking at it, it is so blindingly obvious that is naturally what our bodies want, even if we're not aware of it in the moment. Who would guess one of our biggest nemesis would be right angles and standing still.

yes my specialist said he can tell who has EDS by the way theey sit in the waiting room - slouched

me - I have to lie down now after years of slouching to no avail!

 

[Allyson]

Have you seen Dr. Diana's videos at www.prettyill.com? She has EDS and is trying to find a connection between Multiple Sclerosis, Ehlers-Danlos Syndrome, POTS, Chronic Lyme, CFS, and Fibromyalgia.

thanks for that Camas,
another useful doctor seems to be Prof Rodney Grahame
University College hospital London
he seems to be onto it
see his post here for example
http://www.hypermobility.org/painandhms.php

 

[dannybex]

I'm sure I've posted this before, but this is a great site, with lots of overlapping syndromes including EDS.

She resolved her health issues by looking at environmental factors and nutrition.

Note, she doesn't sell anything on her site or recommend any supplements...just free info on the changes she made and the results she got.

http://www.ctds.info/eds.html

 

[Allyson]

thn

I'm sure I've posted this before, but this is a great site, with lots of overlapping syndromes including EDS.

She resolved her health issues by looking at environmental factors and nutrition.

Note, she doesn't sell anything on her site or recommend any supplements...just free info on the changes she made and the results she got.

http://www.ctds.info/eds.html

Thanks Dannybex gfor that - very intersting, esp as a high proteid diet helps amny of us; I also found this on the EDS Foundation website - copied with permission thanks: ( pretty sure it is portien you need to produce collgen)

The problem is that the three main types of collagen in EDS — COL1, COL3 and COL5 — all are found alongside each other, doing different things. So the symptoms can overlap, and the problems can be found in the same places, but probably of varying intensities.

One of the causes of hypermobile type is suspected to be a flaw in collagen type 3, which appears alongside collagen type 1, because it's produced quickly by young fibroblasts before the tougher type I collagen is synthesized. Collagen type 3 is found in granulation tissue (the connective tissue that replaces a fibrin clot in healing wounds), reticular fiber (the supporting mesh in soft tissues such as liver, bone marrow, and the tissues and organs of the lymphatic system), artery walls, skin, intestines and the uterus. So problems might be found in some cases of Hypermobile EDS in any of those places—and COL3 is the same type Vascular is found in.

Classic EDS is the result of flaws that affect collagen COL5 and COL1. COL5 is found in cell surfaces, hair and placenta. COL1 is the most abundant protein in the body, and is found in scar tissue, tendons, skin, artery walls, fibrocartilage, organs, and bones and teeth. A problem in COL1 or COL5 might overlap with COL3 due to location.

From EDS foundation website,thanks...copied with permission

 

[Allyson]

I'm sure I've posted this before, but this is a great site, with lots of overlapping syndromes including EDS

http://www.ctds.info/eds.html

I also just found the EDS type 3 fb page

http://www.facebook.com/photo.php?f...Ehlers-Danlos-Syndrome-type-3/126241787394071

all the same symptoms as ME keep coming up - photophobia, allergies, etc - plus the joint issues which some of us do not have

 

[dannybex]

I guess my point is that Sandy Simmons had many different diagnoses/symptoms that overlapped, and she healed herself by changing her diet. She didn't worry about different definitions or types or genetics...in fact she questions the genetic hypothesis.

 

[Allyson]

Thanks Danny ; i suppose time will tel if genetics can do anything.

(For example over 40 years of archaeological research in Australia has just been overturned by info from the Human Genome Project that some Indigenous people came here as recently as 4000 years ago from INDIA, adding to the earlier populations that were here up to 60 000 years before.

India had never even been mentioned as a possible source of Australia's population in archaeological research until now so i just proves how powerful genetic science may become - this overturns all the text books..

 

[merylg]

I'm currently looking into Ehler's-Danlos Syndrome Type VIII, supposedly quite rare? Or lesser known anyway. Early periodontitis is one feature. Apparently other features can be quite variable.

http://www.ncbi.nlm.nih.gov/m/pubmed/22739343/

http://www.ncbi.nlm.nih.gov/m/pubmed/1953824/

 

[Allyson]

type 8 is that Meryl? have not heard of that.
thanks for the links will read them

i do see on the EDS chat pages they have a huge amount of symptom overlap with ME including muscle aches, sleep problems, gut isssues, heat intolerance and the f word - what seems like fatigue but is not IMO

I am really finding the heat exacerbates things - the last 10 days have been in the high 30 s here celcius

then on the cooler days i start to feel better.

I note the gym is ariconditioned and very cool and i feel a bit better after a light pilates session there if i lie down a lot

I wonder if they control for heat when they do studies into execise and ME
it might be just the effects of the cooler temperature in the gyms

Soneone said they also feel better after going to a movie - another air conditioned and usually cool situation.

 

[Allyson]

Meryl.

I notice this pertinent phrase in one of the abstacts - from the genetics journal - which seem important

"This novel observation highlights the uncertainty of using connective tissue signs in clinical practice to diagnose EDS type VIII."

cheers,
Ally

 

[Allyson]

I'm currently looking into Ehler's-Danlos Syndrome Type VIII, supposedly quite rare? Or lesser known anyway. Early periodontitis is one feature. Apparently other features can be quite variable.

http://www.ncbi.nlm.nih.gov/m/pubmed/22739343/

http://www.ncbi.nlm.nih.gov/m/pubmed/1953824/

I see that Prof Ingrid Winship who is in charge of the CTD section of the genetics dept at Royal Melbourne Hospital Australia was or is on the board of the EDS Foundation of New Zealand. That looks like good news to me.

 

[Allyson]

[quote="MishMash, .[/quote]

I just got this post below on fb; substituteME for EDS nd it could apply to ME .....are these the same disease or what?




An Open Letter to those without EDS- Please read.
by Jessika and Jen's Daily Zebra Battle Updates on Monday, January 21, 2013 at 2:08pm ·

Open Letter to Those Without Ehler’s Danlos Syndrome

Having Ehlers Danlos Syndrome means that many things change. Just because you can’t see the changes doesn’t mean they aren’t real.

Most people don’t understand much about this disability/disease and its effects, and of those that think they know many are actually misinformed. In the spirit of informing those who wish to understand…
… These are the things that I would like you to understand about me before you judge me…

I am scared. I don’t know what the future holds for me. Will I end up in a wheelchair or will I be one of
the lucky ones. If you find me being quiet and reflective, please don’t think I am upset with you. I am
trying to sort out my fears.

I am sad. EDS has taken so much away from me. I can no longer do many of things I enjoy doing. I
sometimes have difficulty just completing simple tasks. If I appear sad please understand it is EDS I am
upset about, not you.

Please understand that having EDS doesn’t mean I’m not still a human being. I have to spend most of my day being very careful about what I do, and if you visit I might not seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school, work and my family and friends etc., and most of the time I’d still like to hear you talk about yours too.

I still want to be part of the “gang.” Please continue to invite me to participate in activities. I’ll decide if I am capable of it. You may think you are being considerate by not inviting me to go ice-skating with
everyone else, but it hurts when you exclude me. Maybe I can’t skate with everyone else but I can bring
the hot chocolate and watch.

I know sometimes I look perfectly healthy, but looks can be deceiving. Please understand that I am
dealing with invisible pain and a lot of fatigue. Even on a good day I feel like you do when you have the flu (tired, achy and sore). Please keep that in mind.

I want you to know that the pain and instability etc. from EDS moves around. Please don’t attack me
when I’m worse by saying, “But you did it before!” If you want me to do something, ask if I can and I’ll tell you. Just because I climbed the stairs yesterday (or an hour ago) doesn’t mean I can do it today (or in another hour). Yesterday (or earlier) my shoulder was throbbing; today (now) it is my knee, who knows what it will be tomorrow (or later). Also understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing those five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either. Similarly, EDS and the symptoms of it may vary suddenly, meaning I may need to cancel an invitation at the last minute, if this happens please do not take it personally.

Please understand that “getting out and doing things” does not make me feel better, and can often make me worse.

Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it
right now – it can’t be put off or forgotten just because I’m doing something else more exciting. EDS does not forgive its victims easily.


Please understand that I can’t spend all of my energy trying to get well from EDS; it is incurable (and
genetic, so unless I can change my gene’s I cannot change my disease/disorder). With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness or disability like EDS is coming to the realization that you have to spend energy on having a life while you’re sick/disabled. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with EDS or any chronic illness/disability.

Finally, please remember that I am the same person I was before I was diagnosed with (started getting
symptoms of) this; EDS doesn’t change the heart and soul. I still laugh, I still cry. I still love, I am me, I am not my disease. Please continue to love me just as you did before. I need lots of love, understanding, support and hugs, just like you. But most importantly, I need you to understand me.
I would like to be treated as a friend and not be bullied and teased.

 

[Valentijn]

You may think you are being considerate by not inviting me to go ice-skating with everyone else, but it hurts when you exclude me. Maybe I can’t skate with everyone else but I can bring the hot chocolate and watch.

Everyone knows the best part of ice skating is watching every else fall on their butts