Category Archives: Resources

Ehlers Danlos Syndromes Toolkit

Ehlers Danlos Syndromes Toolkit– from the British “Royal College of General Practitioners” – accessed June 2019

This is an excellent resource describing the many and varied problematic symptoms of a life with EDS, including descriptions of the “lived experience”.

The Ehlers-Danlos syndromes (EDS) are heritable connective tissue disorders affecting the quality of collagen in every part of the body. 

Too many people believe that EDS is only about “frequent joint dislocations”, which is what I encountered when I first researched it in the early 1990’s – and when “research” involved books and libraries.  Continue reading

Making Effective Comments on Regulations.gov

Tips For Submitting Effective Comments on regulations.gov – Jan 2018

It’s not just what you say but very much how you say it that leaves an impression. The best ideas can be lost if wrapped in too many words and convoluted language.

A comment can express simple support or dissent for a regulatory action.

However, a constructive, information-rich comment that clearly communicates and supports its claims is more likely to have an impact on regulatory decision making.   Continue reading

Physician Online EDS Education | EDS CME Modules

Physician Online Education | EDS CME Modules

The Ehlers-Danlos Society has a series of free EDS educational modules for which doctors can even earn CME credits, so it’s worth their time to take a look. EDS patients, I encourage you to make your doctors aware of this.

This free Ehlers-Danlos Syndrome CME Physician Education Program is the first online EDS course providing CME credits and covering the fundamental principles for the diagnosis, classification, and treatment of Ehlers-Danlos Syndromes and related disorders as well as associated conditions.

Any healthcare providers interested in learning more about EDS diagnosis and treatment are encouraged to view the presentations whether or not they desire the CMEs.   Continue reading

EDS diagnosis for general practitioners

EDS diagnosis for general practitioners – Alan Spanos MD Clinical Associate UNC School of Medicine Chapel Hill, NC – January 2018

Joint Hypermobility: Diagnosis for Non-Specialists

This article describes how physician generalists can make useful working diagnoses of most patients with hypermobility syndromes, and proceed with effective treatment for them.

It is primarily written for physicians. Individuals who suspect they may have a hypermobility condition may wish to read it through, and have their primary care practitioners use it to make a diagnosis.   Continue reading

Demanding Patient’s Rights (links for contacts)

The Pain Advocate’s Corner: Demanding Patient’s Rights (contact information by category) by Celeste Cooper

Celeste has a page of links to government agencies, professional societies, advocacy organizations, publications, and advocacy groups whom we can contact with our stories.

It’s time for a reawakening of patient centered care that embraces the ethical preservation of our right to choose. It is a moral obligation of all parties that all stakeholders are part of every process when discussing the treatment of pain.

If we want change, we are obliged to share our unique individual circumstances and our life encounters. It’s time to put into words our desires, needs and rights.

The following are links to allow each of us to do just that. 

CDC Top 10 Causes of death 2016

Is the CDC trying to hide the enormous scale of suicides lately?

By splitting up the total suicides by method – firearm, suffocation, or poisoning – the numbers are far smaller. Even the three-way split still ranks them all in the top 10 causes of death.

If they counted all the methods together, which would make much more sense,  the total of 41,278 suicides would rank as the 2nd  leading cause of deaths.

That’s a sad reflection on life in the US – so bad that so many cannot tolerate it anymore. They are willing to give up life itself to escape what has literally become unbearable.   Continue reading

For Research: Sources of Current, Reliable Opioid Data

Covering opioids with data – By Charles Ornstein, ProPublica – (With assistance from many)

There are multiple ways of covering the opioid epidemic, but most rely on having current, reliable data to track how its evolving and the toll it’s taking. This tip sheet will help provide data sources on

  1. How opioids are being prescribed across the country,
  2. Deaths and hospitalizations linked to opioids, and
  3. Treatment for opioid abuse and addiction, including doctors who are certified to prescribe buprenorphine.

Moreover, there are a variety of state and local resources. If you find others, please send them to charles.ornstein@propublica.org.

The thoracolumbar fascia: anatomy and function

The thoracolumbar fascia: anatomy, function and clinical considerations – free full-text /PMC3512278/ – J Anat. – 2012 May 27.

In this overview, new and existent material on the organization and composition of the thoracolumbar fascia (TLF) will be evaluated in respect to its anatomy, innervation biomechanics and clinical relevance.

The integration of the passive connective tissues of the TLF and active muscular structures surrounding this structure are discussed, and the relevance of their mutual interactions in relation to low back and pelvic pain reviewed.

The TLF is a girdling structure consisting of several aponeurotic and fascial layers that separates the paraspinal muscles from the muscles of the posterior abdominal wall.   Continue reading