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

Allyson · Feb 3, 2014

thanks for the conference info MerylG - will you try and make it?

Variation in symptoms - vascular EDS - thanks Cathy

This is a database of some of the variants for COL3A1. Just for the substitution variant alone, there are over 450+ different mutations that cause Vascular EDS and only a handful of these are the same.

Then you filter in the different, unique presentation of symptoms for each individual with their own unique mutation variant.

https://eds.gene.le.ac.uk/variants.php?select_db=COL3A1...

Ehlers-Danlos Syndrome Variant Database - Leiden Open Variation Database
eds.gene.le.ac.uk

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Allyson · Feb 6, 2014

EDS and POTS on CNN

http://ireport.cnn.com/docs/DOC-1081221

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Ecoclimber · Feb 7, 2014

Clin Rheumatol. 2014 Feb 4. [Epub ahead of print]
Chronic pain in patients with the hypermobility type of Ehlers-Danlos syndrome: evidence for generalized hyperalgesia.
Rombaut L, Scheper M, De Wandele I, De Vries J, Meeus M, Malfait F, Engelbert R, Calders P.
Author information
Abstract
Chronic widespread pain is highly present in patients with the Ehlers-Danlos syndrome hypermobility type (EDS-HT), but up to now, evidence for generalized hyperalgesia is lacking. The aim of this study is to investigate whether pressure pain thresholds (PPTs) at both symptomatic and asymptomatic body areas differ in EDS-HT patients compared to healthy subjects. Twenty-three women with EDS-HT and 23 gender- and age-matched healthy controls participated. All subjects marked on Margolis Pain Diagram where they felt pain lasting longer than 24 h in the past 4 weeks. Then, they completed several questionnaires assessing pain cognitions, fatigue, disability, and general health status, in order to take the possible influence of these factors on PPTs into account. Patients also completed a form concerning the type of pain they experienced. Thereupon, a blinded researcher assessed PPTs at 14 body locations on the trunk and extremities. PPTs were compared for the two complete groups. In addition, PPTs of patients and controls who did not report pain in a respective zone were compared. PPTs of the patients were significantly lower compared to those of the control group, also when pain-free samples per zone were compared. The mean (SD) PPT was 2.9 (1.62) kg/cm2 in the EDS-HT patients and 5.2 (1.88) kg/cm2 in the controls (P < 0.001). No confounding factors responsible for the observed differences could be revealed. In half of the patient group, a predominantly neuropathic pain component was likely present. This study provides evidence for the existence of hyperalgesia even in asymptomatic areas (generalized secondary hyperalgesia). The generalized hyperalgesia may represent the involvement of a sensitized central nervous system, which inquires an adapted pain management for this patient group.

Radio · Feb 9, 2014

This is a really good thread...The connection to CFS/ME could be a Sulphate / Hydrogen sulfide mast cell dysfunction..Sulfates supports polysaccharides in maintain connective tissue. Also, cholesterol sulfate / phospholipid are important factor in healing these tissues...Polysaccharides are also needed in lung tissues....How many people here have breathing problems?

Extracellular matrix
http://en.wikipedia.org/wiki/Extracellular_matrix
THE CONNECTIVE TISSUES
http://faculty.ucc.edu/biology-potter/connective_tissues.htm
Pulmonary surfactant
http://en.wikipedia.org/wiki/Pulmonary_surfactant

Phospholipid replacement therapy could have a impact in this syndrome....Here is some supplement to consider...

Phosphatdylcholine (http://www.bodybio.com/storeproduct357.aspx) or
NT Factor (Nutri cology Nt factor) http://www.iherb.com/Nutricology-NT-Factor-EnergyLipids-Powder-150-grams/45698#p=1&oos=1&disc=0&lc=en-US&w=NT Factor (Nutri cology Nt factor)&rc=12&sr=null&ic=3 or
Smart Youthful Energy Wafers http://www.amazon.com/Energy-Chewable-Wafers-Factor-Lipids/dp/B00DMINPRM

Enzymatic Therapy - Better Veins
www.amazon.com/dp/B00014FVA4/ref=wl_it_dp_o_pC_nS_ttl?_encoding=UTF8&colid=STE6K5DNMJYK&coliid=I1KNY89BO5074C

Mast-Cells (POTS) The Driscoll Theory Validated?
http://forums.phoenixrising.me/inde...lls-pots-the-driscoll-theory-validated.28059/
HOW I RECOVERED FROM CFS
http://forums.phoenixrising.me/index.php?threads/how-i-recovered-from-cfs.27280/
Poisoning the Mitochondria
http://forums.phoenixrising.me/index.php?threads/poisoning-the-mitochondria.27790/

Allyson · Feb 16, 2014

Radio said:

thanks Radio, yes I think it is very interesting too - - some good links there thankts - and the mast cell link too!

I read about a new kind of light therapy that is said to help build collagen - a bed of different kinds of lights including some infra-red that you lie on; it is expensive at 100 dollars per 30 minute session at the moment but keep an eye out for any progress there.

I read they are using it for astronauts who often suffer some of our side effects from space travel. (page 22 of last Sundays Sunday Life was where I read about it.) And North Shore hospital in Sydney is using it for some patients already. infra- red light for wound healing for patients with pressure ulcers is used too. I do find the blue light in the morning is helping me sleep better so it is possible there is something in it - especially considering the low Vitamin D - which they don't know if it is a possible cause or effect of the illness.

http://www.bodyboostbed.com.au/index.php/body-boost-bed-info

http://en.m.wikipedia.org/wiki/Light_therapy

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Allyson · Feb 16, 2014

Marfan's is connected to EDS so is award to Dr Harry Dietz for genetic research into connective tissue disorders and research into aortic aneurysms is good to see

http://www.cleveland.com/healthfit/index.ssf/2014/02/uh_harrington_discovery_instit.html

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Allyson · Feb 17, 2014

Collagen is a protein.
EDS being caused from faulty collagen/ connective tissue...this may be applied to EDS one day???

http://www.zeitnews.org/de/node/11887

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Allyson · Feb 17, 2014

this link that @Radio posted above is particularly informative re CTs
http://en.wikipedia.org/wiki/Extracellular_matrix

thanks again Radio
Ally

PNR2008 · Feb 18, 2014

@Allyson, It exciting about Dr. Dietz getting the Harrington Award. I'm near Cleveland and I wish I could see him but Marfan is one of the worst EDS and I think I do have a touch of it. Even at 64 with surgery on L4 and L5 I can touch my palms to the floor and do other things. I'm really looking for answers about the POTS and knee leg pain.

Allyson · Feb 20, 2014

PNR2008 said:

Hi PRN,
yes I thought Dr Dietz had a book ou about ME some time ago too - or am I confusing him with another doctor?
Wow that is some hypermobility you have then; many people stiffen u with age and so go down on the Beighton' s scale but you must have been very hypermobile to begin with.
Hope you get to see Dr Dietz and that he can help you - great to see that he is doing the research into EDS etc.

Ally

PNR2008 · Feb 20, 2014

@Allyson, Dr Dietz is actually at John Hopkins, the award is from Cleveland UH Hospitals from the Harrington Foundation in Cleveland. I doubt if he's taking patients in Cleveland. I just wished that I could see him.

Allyson · Feb 21, 2014

fb posts are coming up about feeling worse after meals

Does anyone find that too?

I certainly do.

- maybe people should test their BP and pulse after eating too for some data on it....

Ally

Allyson · Feb 22, 2014

Mini review

Ehlers–Danlos syndrome: A showcase of conditions that lead to

understanding matrix biology

Peter H. Byers, Mitzi L. Murray !

Department of Pathology, University of Washington, Seattle, WA 98195-7470, United States

Department of Medicine (Medical Genetics), University of Washington, Seattle, WA 98195-7470, United States

a r t i c l e i n f o a b s t r a c t

Article history:

Received 20 June 2013

Received in revised form 8 July 2013

Accepted 9 July 2013

Keywords:

Ehlers–Danlos syndrome

Collagen

Proteoglycans

The Ehlers–Danlos syndromes (EDS) are genetically and clinically diverse disorders in which affected individuals

share a number of physical characteristics, including joint hypermobility, skin extensibility, and tissue friability.

Clinical investigations opened the door to identifying the biochemical and molecular etiologies of this diverse but

overlapping group of disorders. In this article, we provide an overview of how these disorders informour understanding

of matrix biology, including the role of collagens (types I, III and V), proteoglycans and other proteins.

Published by Elsevier B.V.

Allyson · Feb 24, 2014

Non-operative management of diverticular perforation in a patient

with suspected Ehlers–Danlos syndrome!

M.C. Caseya, I. Robertsona,!, P.S. Watersa, J. Hanaghanb, W. Khana, K. Barrya

a Department of General Surgery, Mayo General Hospital, Ireland

b Department of Diagnostic and Interventional Radiology, Mayo General Hospital, Ireland

a r t i c l e i n f o

Article history:

Received 16 September 2013

Accepted 18 December 2013

Available online 8 January 2014

Keywords:

Ehlers–Danlos syndrome

Colonic perforation

Conservative management

a b s t r a c t

INTRODUCTION: No consensus exists regarding definitive management of colonic perforation in

Ehlers–Danlos syndrome (EDS), with various authors advocating different operative techniques. Spontaneous

colonic perforation is a recognised complication of vascular-type EDS (type IV), with many reported

cases in the literature. No such cases have been reported concerning classical-type EDS (type I/II).

PRESENTATION OF CASE: A 55-year-old male with a family history of EDS presented with acute lower

abdominal pain and signs of localised peritonitis. Following resuscitation, computerised tomography

identified perforation of a sigmoid diverticulum with localised intraperitoneal air. Considering the

potential complications associated with laparotomy in a patient with EDS, a trial of conservative management

was undertaken including image-guided drainage of a mesenteric abscess. Intensive care

monitoring, nutritional support and intravenous antibiotics also facilitated successful non-operative

management. Following discharge, molecular studies confirmed COL5A1 mutation, and a diagnosis of

classical Ehlers–Danlos syndrome was established.

DISCUSSION: This is the first reported case of successful conservative management of colonic diverticular

perforation in a patient with classical Ehlers–Danlos syndrome.

CONCLUSION: EDS is highly significant in the surgical context, with the causative genetic factors serving

to further complicate the course of surgical intervention. In the absence of consensus regarding best

surgical management, due consideration should be given to non-operative management of benign colonic

perforation.