Category Archives: Resources

Fascia Research from the NIH

Because fascia is made from collagen, the genetic defect from EDS will often cause us problems with this tissue. It’s thin, fragile, stretches too much, and gives way too easily.

PubMed Central® (PMC) is a free full-text archive of biomedical and life sciences journal literature at the U.S. National Institutes of Health’s National Library of Medicine (NIH/NLM).

Research on the body’s fascia (connective tissue) is finding more and more of its functions and abilities, going far beyond just “holding stuff together”.  I’ve posted here the abstracts of the following 4 articles and you can decide for yourself if they’re worth reading in full.

  1. Smooth Muscle
  2. Visceral Fascia
  3. Bone Tissue
  4. Hormone Receptor Expression in Human Fascial Tissue

Continue reading

How consumers can interact with state medical boards

How can consumers interact with state medical boards? – National Pain Report – by Geoff Sims – Oct 2019

Editor’s Note: When Dr. Thomas Kline tweeted last week that it’s time for chronic pain patients to “flood state medical boards with online complaints” about being cutoff w/ the CDC and “federal drug police invalid medical excuses, we asked Terri Lewis Ph.D. for an article that shows patients how they can do it and why it might be a good idea.

Many patients do not know where to turn when they have concerns about the competency or conduct of a doctor. State medical boards are government agencies, usually housed in state Departments of Health, that are empowered to investigate complaints about doctors and, when warranted, take action against them.   Continue reading

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