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

Sushi

Sushi

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CrochetChick

CrochetChick

Woof
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I have only read the first page so someone may have already said this. Dr Hyde has said he is not sure if ME and EDS are the same illness, only because there just hasn't been enough research done. But he is of the belief that they may be the same thing. EDS can be triggered off by a virus as well.

There needs to be research funded in this area. To be honest I wouldn't be surprised if it's in the same family.
 
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Allyson

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CrochetChick said:
I have only read the first page so someone may have already said this. Dr Hyde has said he is not sure if ME and EDS are the same illness, only because there just hasn't been enough research done. But he is of the belief that they may be the same thing.......
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thanks Crochetchick!


and thanks to Kathrynn Donovan for this

Not sure how accurate this short article is - but interesting as she refers to muscle hypertonicity /spasticity in EDS as well as the hypermobility - and claims to have found a treatment that works.

Also deals with gene testing and MTFHR gene

http://www.mthfrheds.com/


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Radio

Senior Member
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Liver disease Ehlers-Danlos connection?

Extracellular matrix (ECM)
http://en.wikipedia.org/wiki/Extracellular_matrix

Tenascin-X deficiency is associated with Ehlers-Danlos syndrome.
http://www.ncbi.nlm.nih.gov/pubmed/9288108

Tenascin X Wiki
http://en.wikipedia.org/wiki/Tenascin_X

Glycoproteins
http://en.wikipedia.org/wiki/Glycoprotein

Glycosylation http://en.wikipedia.org/wiki/Glycosylation

IGF-I Stimulation of Collagen Synthesis in Ehlers-Danlos Patients
http://clinicaltrials.gov/show/NCT01446783

Nonalcoholic fatty liver disease is associated with increased GHBP and reduced GH/IGF-I levels.
http://www.ncbi.nlm.nih.gov/pubmed/22077984

P-glycoprotein 1
http://en.wikipedia.org/wiki/P-glycoprotein
P-glycoprotein is expressed primarily in certain cell types in the liver, pancreas, kidney, colon, and jejunum.
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The Silent Liver Damage
http://forums.phoenixrising.me/inde...man-health-pathways-to-modern-diseases.28937/
 
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Allyson

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thanks @Radio and @Esther12

http://rheumatology.oxfordjournals.org/content/45/5/502.long

The genetic basis of the joint hypermobility syndromes
F. Malfait, A. J. Hakim1, A. De Paepe and R. Grahame1

Rheumatologists have long considered that joint hypermobility is inherited. The familial aggregation is striking and the pattern of inheritance strongly points to an autosomal dominant mode. The first comprehensive description of symptomatic joint hypermobility in the rheumatological literature is attributed to Kirk, Ansell and Bywaters in 1967 [1]. They coined the term ‘hypermobility syndrome’ (HMS). Later, the recognition of the relatively benign prognosis of the HMS in terms of life-threatening complications led to the use of the term ‘benign joint hypermobility syndrome’ (BJHS) or latterly, the ‘joint hypermobility syndrome’ (JHS)....
 
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Allyson

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NEOPRENE BODY SUITS

So Nasa has spent 20 million on making Neoprene body suits for astronauts

these are light, cool and would allow a soldier wearing them to jump right over a car while carrying a heavy load

so they sound like they might be useful for both POTS and EDS
both for dysautonomia and joint issues

Watch this space.

Ally
 
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Allyson

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From Dr Heidi Napora Collins - with thanks

EDS and Your Gut

Adapted from a lengthy comment I originally made on the national EDNF FB page related to EDS and multiple “overlapping” disorders, including magnesium imbalance and gut problems. I posted the following text on the Michiana EDNF and Michigander Zebras group pages a few days back, and thought I would re-post here. As always, SHARE THIS INFO FREELY, ESPECIALLY WITH YOUR HEALTHCARE PROVIDERS.

EDS is a primary condition affecting connective tissue. If the primary condition could go away, any condition secondary to it should theoretically disappear. Since nobody has figured out how to make EDS go away, we are stuck with practically innumerable secondary conditions, as connective tissue is in every tissue of the body.

All EDS patients should educate themselves regarding the basics of the autonomic nervous system, including the enteric nervous system, which governs gut function.

Many people understand that the autonomic nervous system controls the “fight or flight” response. Specifically, the sympathetic portion of the autonomic nervous system drives the “fight or flight” response.

Far fewer realize that the autonomic nervous system controls the “rest and digest” response that offsets and balances the “fight or flight” response. Specifically, the parasympathetic portion of the autonomic nervous system drives the “rest and digest” response.

Enter the enteric nervous system.

Directly from Wikipedia: “The enteric nervous system (ENS) or Intrinsic nervous system is one of the main divisions of the autonomic nervous system and consists of a mesh-like system of neurons that governs the function of the gastrointestinal system. …the enteric nervous system is sometimes called a ‘second brain’” http://en.wikipedia.org/wiki/Enteric_nervous_system

The enteric nervous system resides in the gut. Although it is subject to control from the brain and spinal cord, if connections are severed between brain, spinal cord, and enteric nervous system, the enteric nervous system will function independently (as if it has a mind of its own.)

I find the following documents from http://foodintolerancemanagementplan.com very nicely describe the enteric nervous system in easily readable terms. See: Understanding the Human Gut and the Enteric Nervous System (ENS) http://foodintolerancemanagementplan.com/documents/Understanding%20the%20Human%20Gut%20and%20the%20Enteric%20Nervous%20System.pdf

The same site lists numerous detailed references regarding enteric nervous system health, including dietary management of enteric disorders. See: Helpful Resources and Links and Research Papers, Studies and Donations http://foodintolerancemanagementplan.com/documents/helpful%20resources%20&%20links.pdf

For example: Evidence-based dietary management of functional gastrointestinal disorders. The FODMAP approach. http://www.ncbi.nlm.nih.gov/pubmed?term=20136989)

I will quote directly from “The enteric nervous system: New developments and emerging concepts” http://www.um.edu.mt/umms/mmj/PDF/329.pdf :

“The ENS controls gut motility and secretion via local reflexes that are triggered by local distension of the intestinal wall, distortion of the mucosa, and chemical contents in the lumen. This neuronal regulation of GI functions is due to the liberation of specific neuromediators synthesized by functionally defined enteric neurons. In addition, ENS is involved in the control of immune and inflammatory processes throughout the gut. Thus, it is not surprising that any damage to ENS circuitries and in the neurotransmitters systems results in a wide array of gut disorders, including motor impairments, which are characterized by high morbidity. … with a markedly compromised patient’s quality of life and occasional fatal outcomes. …Besides a few exceptions, the mechanisms through which neural diseases cause gastrointestinal dysfunction, including motor abnormalities, remain poorly understood.”

Also: “ENS express all neurotransmitters so far known in CNS (more than 30 neurotransmitters). These include classical neurotransmitters such as acetylcholine (Ach), noradrenaline, serotonin, GABA and glutamate, but a great number of other neurotransmitter and hormones also participate in the regulation of functions in the GI tract: vasoactive intestinal polypeptide (VIP), nitric oxide, galanin, motilin, adenosine triphosphate, tachykinins, etc.”

In my opinion, the two most critical concepts touched upon in the quoted text are:

1) The ENS controls gut motility and secretion via local reflexes that are triggered by local distension of the intestinal wall, distortion of the mucosa, and chemical contents in the lumen. Connective tissue is what allows the intestinal wall to distort and distend when needed. This is where the connection lies between EDS and gut disorders!!!

2) Adrenaline and noradrenaline (epinephrine and norepinephrine) are catecholamines. When catecholamines have gone haywire (for example, in dysautomic conditions such as POTS), of course the enteric nervous system (and thus, the gut) is very specifically affected!!!

POTS is just one of the dysautonomic conditions which can occur in persons with or without EDS. For those familiar with POTS, it isn’t just about tachycardia. It’s a SYNDROME which includes gut disorders. POTS involves either an intrinsically “broken” autonomic nervous system (a primary dysautonomia) or an autonomic nervous system without intrinsic pathology that subsequently “misbehaves” due to specific controlling circumstances (a secondary dysautonomia). In the case of POTS comorbid with EDS, POTS is believed almost certainly to occur as a condition secondary to EDS. (The jury is still out as to exactly WHY EDS causes POTS, but there is little dispute regarding the high incidence of EDS sufferers who struggle with POTS.) In the broadest sense, both patients and practitioners need to understand that persons with dysautonomia can experience symptoms in ANY system affected by the autonomic nervous system. In fact, ALL systems are modulated by the autonomic nervous system; this means that dysautonomia can wreak havoc with just about anything! Perhaps the most commonly acknowledged symptoms are cardiovascular (tachycardia, orthostatic intolerance, fatigue, etc.), gastrointestinal (malabsorption, dysmotility, IBS, constipation, etc.), and amplification of pain in general. (Of course, the fact that the list of dysautonomia-associated symptoms are seemingly infinite – and the fact that dysautonomia is not “easy” to treat – is why dysautonomia generally makes practitioners want to hide under a rock when their patients mention it.)

Bottom line: for many of those with EDS, gut difficulties likely relate heavily to the enteric nervous system and are often associated with autonomic dysfunction such as POTS.
Click to expand...

A few more links that are worth looking at:

Direct Effect of Catecholamines on Bacterial Growth: A New Mechanism by Which Stress can Influence Digestive Health and Disease http://www.brainimmune.com/index.php?option=com_content&view=article&id=1594:direct-effect-of-catecholamines-on-bacterial-growth-and-intestinal-mucosabacteria-interactions-a-new-mechanism-by-which-stress-can-influence-digestive-health-and-disease&catid=56:reviews-and-viewpoints&Itemid=413

Stress at the intestinal surface: catecholamines and mucosa-bacteria interactions. http://www.ncbi.nlm.nih.gov/pubmed?term=20941511


Understanding and controlling the enteric nervous system. http://www.ncbi.nlm.nih.gov/pubmed?term=12473304


Catecholamines and Vasopressin During Critical Illness http://medicina.iztacala.unam.mx/medicina/Catecholamines%20and%20Vasopressin%20During.pdf


Enteric nervous system - Wikipedia, the free encyclopedia
The enteric nervous system (ENS) or intrinsic nervous system is one of the main divisions of the autonomic nervous system and consists of a mesh-like system of neurons that governs the function of the gastrointestinal system.[1] The human gastrointestinal tract is made up of the stomach and intestin…
http://en.wikipedia.org/wiki/Enteric_nervous_system



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Countrygirl

Countrygirl

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I am yet to read this thread which is of interest to me as a doctor-friend diagnosed me with EDS a few years ago, although it does not explain my ME symptoms.

I have just read this paper, so in case it isn't already here I'll post it. Apologies if it is already pasted above.

http://downloads.hindawi.com/journals/isrn.dermatology/2012/751768.pdf

International Scholarly Research Network
ISRN Dermatology
Volume 2012, Article ID 751768, 22 pages
doi:10.5402/2012/751768

Review Article

Ehlers-Danlos Syndrome, Hypermobility Type: An
Underdiagnosed Hereditary Connective Tissue Disorder with
Mucocutaneous, Articular, and Systemic Manifestations

Marco Castori
Division of Medical Genetics, Department of Molecular Medicine, San Camillo-Forlanini Hospital, Sapienza University,
Circonvallazione Gianicolense, 87, 00152 Rome, Italy

Correspondence should be addressed to Marco Castori, mcastori@scamilloforlanini.rm.it
Received 11 September 2012; Accepted 14 October 2012

Academic Editors: B. Amichai and A. Zalewska
Copyright © 2012 Marco Castori. This is an open access article distributed under the Creative Commons Attribution License,
which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Ehlers-Danlos syndrome, hypermobility type, constituting a phenotypic continuum with or, perhaps, corresponding to the joint hypermobility syndrome (JHS/EDS-HT), is likely the most common, though the least recognized, heritable connective tissue disorder. Known for decades as a hereditary condition with predominant rheumatologic manifestations, it is now emerging as a multisystemic disorder with widespread manifestations. Nevertheless, the practitioners’ awareness of this condition is generally poor and most patients await years or, perhaps, decades before reaching the correct diagnosis. Among the various sites of disease manifestations, skin and mucosae represent a neglected organ where the dermatologist can easily spot diagnostic clues,
which consistently integrate joint hypermobility and other orthopedic/neurologic manifestations at physical examination. In this paper, actual knowledge on JHS/EDS-HT is summarized in various sections. Particular attention has been posed on overlooked manifestations, including cutaneous, mucosal, and oropharyngeal features, and early diagnosis techniques, as a major point of interest for the practicing dermatologist. Actual research progresses on JH/EDS-HT envisage an unexpected link between heritable dysfunctions of the connective tissue and a wide range of functional somatic syndromes, most of them commonly diagnosed in the office of various specialists, comprising dermatologists......
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Allyson

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Countrygirl said:
I am yet to read this thread which is of interest to me as a doctor-friend diagnosed me with EDS a few years ago, although it does not explain my ME symptoms.

I have just read this paper, so in case it isn't already here I'll post it. Apologies if it is already pasted above.




http://downloads.hindawi.com/journals/isrn.dermatology/2012/751768.pdf
Click to expand...
Thanks for that Countrygirl


Upright MRI s are now available in Australia

http://www.medscans.com.au/bayside-standing-mri.html


Ally
 
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