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Ehlers-Danlos National Foundation
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A distraction today. Lose yourself in a painting: “Dreams of Dalí,” the 360-degree video, drops you into the world of Dalí’s 1935 canvas Archaeological Reminiscence of Millet’s ‘Angelus,’ an homage to an earlier work (Jean-François Millet’s painting, “The Angelus”) which enjoyed enormous popularity during Dalí’s youth. If you make use of the arrows that appear in the video’s upper-left corner or click and drag (or, on smartphones, press and drag with your finger) within the frame, you can turn the “camera” in any direction.
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“We found that chronic pain changes the way DNA is marked not only in the brain but also in T cells, a type of white blood cell essential for immunity”, says Moshe Szyf, a professor in the Faculty of Medicine at McGill. “Our findings highlight the devastating impact of chronic pain on other important parts of the body such as the immune system.” 
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In today's "Stronger Together: The International Future of EDS", hosted by The Ehlers-Danlos National Foundation, special guest Lara Bloom introduced the new and exciting international EDS charity — The Ehlers-Danlos Society. The purpose and mission of the society was discussed, along with major projects coming up, such as the 2016 International Symposium, and how you can be a part of it. The webinar was recorded; an announcement will be made here when the recording is available for free viewing at http://bit.ly/EDNFYouTube.
Established in 1985 by Founder Nancy Hanna Rogowski (1957 - 1995), we are a 501 (c) (3) Nonprofit Organization with thousands of members across America and a...
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The most important sentence in the report I just posted is: "If benefit/harm ratio is unacceptable, consider stopping the drug." This applies to ANY medication we take, even over-the-counter drugs.
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Background information on why what was presented as data in the CDC's proposal may well have been misinformation. 
By Denise Molohon, Guest Columnist I think the minute anyone without bias or personal agenda began reading through the CDC's proposed guidelines for opioid prescribing, they must seriously question many things. Chief among them, the highly suspect "low to very low quality" evidence being presented to support their "strong recommendations," but also their dangerously skewed data; which ultimately could leave millions of chronic pai...
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"No matter how qualified or deserving you are, you will never reach a better life until you can imagine it for yourself, and allow yourself to have it." (Richard Bach)
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In their circles
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312 people
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"In their testing, the scientists found that their endomorphin variants produced equal or greater pain relief than morphine without causing substantially slower breathing in rats. When given a similarly potent dose of morphine to the animals, the animals experienced significant respiratory depression. …The engineered drug also produced far less tolerance than morphine." http://www.sciencealert.com/this-new-drug-is-as-strong-as-morphine-but-without-the-side-effects

The report tdiscussed is published in NEUROPHARMACOLOGY, Volume 105, June 2016, Pages 215–227 — "Endomorphin analog analgesics with reduced abuse liability, respiratory depression, motor impairment, tolerance, and glial activation relative to morphine," and can be read in abstract (or purchased) at http://www.sciencedirect.com/science/article/pii/S0028390815302203
Scientists have developed a new drug that could be a safer alternative to morphine for medical use. The researchers found that engineered variants of endomorphin , a naturally occurring chemical in the body, are as strong as morphine when it comes...
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This is not to discourage you. The fact that one in ten get relief is still 10%, and if it works for you, that’s outstanding. This is more data for those of you considering the neuropathic pain drugs, and more particularly, how to approach trying them. The takeaways are, primarily:

“Evidence from eight Cochrane reviews should temper expectations regarding the likelihood and magnitude of pain relief from gabapentin, pregabalin, duloxetine, venlafaxine, amitriptyline, nortriptyline, imipramine or desipramine. When initiating a therapeutic trial with one of these drugs in a patient, it is reasonable to start at the lowest recommended dose and assess the patient for benefit and harm at one week. If benefit harm ratio is unacceptable, consider stopping the drug. If insufficient but partial pain relief is achieved, increase the dose and reassess within one week. If functionally meaningful benefit is still absent, stop the drug and try something else. For patients who achieve clinically meaningful analgesia, use the lowest individualized effective dose to minimize adverse effects. Reassess regularly (e.g. every two weeks), as most patients treated with placebo also improve over time.”

And:

“Most patients experience some adverse side effects like somnolence, dizziness, nausea, dry mouth and constipation. …Higher doses are unlikely to achieve greater pain reduction, but are more likely to cause harm.”

http://www.ti.ubc.ca/2016/01/19/96-benefits-and-harms-of-drugs-for-neuropathic-pain/
This Letter updates information on gabapentin and critically appraises randomized clinical trials (RCT) assessing the benefits and harms of three other drugs promoted for neuropathic pain: pregabalin, duloxetine, and venlafaxine.
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"All progress is precarious, and the solution of one problem brings us face to face with another problem." (Martin Luther King, Jr.)
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Many of us have been or are on proton pump inhibitors because of EDS problems. The conclusion of the study (a large group of 10,482 from 1997 to 2011, and replicated in an administrative cohort of 248,751) is that proton pump inhibitor use is associated with a higher risk of incident chronic kidney disease.
This population-based cohort study quantifies the association between proton pump inhibitor use and incident chronic kidney disease among participants in the Atherosclerosis Risk in Communities study.
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People
In their circles
65 people
Have them in circles
312 people
Cy Borg's profile photo
AidMyChronicPain's profile photo
Deborah Petermann's profile photo
Debbie Krueger's profile photo
Jessamyn Butler's profile photo
Pixi Sara's profile photo
3-Point Products's profile photo
Melissa Sinclair's profile photo
sandrine bournier's profile photo
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Resources for those affected by Ehlers-Danlos syndrome
Introduction
Ehlers-Danlos National Foundation creates resources for those affected by the connective tissue disorder Ehlers-Danlos syndrome. Any medical information found here should be discussed with your doctors thoroughly before taking action. Established in 1985 by Founder Nancy Hanna Rogowski (1957 - 1995), we are a 501 (c) (3) Nonprofit Organization with thousands of members across America and around the world. Our volunteers and their families are the life blood of EDNF and make a huge difference to those affected by EDS.
Contact Information
Contact info
Phone
703-506-2892
Fax
703-506-3266
Address
7918 Jones Branch Drive Suite 300 McLean VA 2210