Category Archives: Resources

Latest EDS Information – Fall 2017

Links to the best and latest information about EDS presented by over 20 experts. These numerous presentations address the many and varied implications of this connective tissue disorder.

These presentations from the 2017 Ehlers-Danlos Society Global Learning Conference are provided for your personal use.

The following presentations were those available to us as of September 21, 2017. Some sessions were also video-recorded; once the finished versions are available, those videos will be posted in our YouTube channel and linked here.

The presentations and materials remain the intellectual property of the presenters, and all rights are reserved to them. The Society does not control and is not responsible for the content of presentations.

Advertisements

Widespread Effects of Defective Collagen

Collagen – Wikipedia – This protein, affected by Ehlers-Danlos and other connective tissue disorders, has multiple critical roles and gives structural support throughout the whole body.

Collagen is the main structural protein in the extracellular space in the various connective tissues in animal bodies.

As the main component of connective tissue, it is the most abundant protein in mammals, making up from 25% to 35% of the whole-body protein content.

Depending upon the degree of mineralization, collagen tissues may be rigid (bone), compliant (tendon), or have a gradient from rigid to compliant (cartilage).  Continue reading

Ehlers-Danlos Syndrome from MedlinePlus.gov

Ehlers-Danlos Syndrome from MedlinePlus.gov – a trusted site of the NIH with factual information (scientific and rarely wrong, not commercial, promotional, or fake)

Ehlers-Danlos syndrome (EDS) is a group of inherited disorders that weaken connective tissues. Connective tissues are proteins that support skin, bones, blood vessels, and other organs.

This means that EDS can affect almost any function of your body.

EDS usually affects your skin, joints and blood vessel walls. Continue reading

Reliable medical/health information online

MedlinePlus.com 

Produced by the National Library of Medicine, the world’s largest medical library, it brings you information about diseases, conditions, and wellness issues in language you can understand.

MedlinePlus offers reliable, up-to-date health information, anytime, anywhere, for free.

MedlinePlus has extensive information from the National Institutes of Health and other trusted sources on over 1000 diseases and conditions.   Continue reading

Online Statistics Primer for Clinical Trials

Welcome to STAT 509: Clinical Trials –  Pennsylvania State University

Though this is an actual course, I found it useful as a quick reference when I wanted to understand some aspect of statistics being using in a study. Below, I’ve listed direct links to the 19 chapters/topics of statistics used in clinical trials.

This course is a survey of statistical methods and study design issues related to the testing of medical treatments.

Baloney Detection Kit

The Baloney Detection Kit: Carl Sagan’s Rules for Bullshit-Busting and Critical Thinking – Brain Pickings – Maria Popova

Carl Sagan (November 9, 1934–December 20, 1996) was many things.

But above all, he endures as our era’s greatest patron saint of reason and common sense, a master of the vital balance between skepticism and openness.

In The Demon-Haunted World: Science as a Candle in the Dark (public library) — the same indispensable volume that gave us Sagan’s timeless meditation on science and spirituality, published mere months before his death in 1996 — Sagan shares his secret to upholding the rites of reason, even in the face of society’s most shameless untruths and outrageous propaganda.

In a chapter titled “The Fine Art of Baloney Detection,” Sagan reflects on the many types of deception to which we’re susceptible — from psychics to religious zealotry to paid product endorsements by scientists, which he held in especially low regard, noting that they “betray contempt for the intelligence of their customers” and “introduce an insidious corruption of popular attitudes about scientific objectivity.” (Cue in PBS’s Joe Hanson on how to read science news.)

Through their training, scientists are equipped with what Sagan calls a “baloney detection kit” — a set of cognitive tools and techniques that fortify the mind against penetration by falsehoods:

The kit is brought out as a matter of course whenever new ideas are offered for consideration. If the new idea survives examination by the tools in our kit, we grant it warm, although tentative, acceptance. If you’re so inclined, if you don’t want to buy baloney even when it’s reassuring to do so, there are precautions that can be taken; there’s a tried-and-true, consumer-tested method.

But the kit, Sagan argues, isn’t merely a tool of science — rather, it contains invaluable tools of healthy skepticism that apply just as elegantly, and just as necessarily, to everyday life.

By adopting the kit, we can all shield ourselves against clueless guile and deliberate manipulation.

Sagan shares nine of these tools:

  1. Wherever possible there must be independent confirmation of the “facts.”
  2. Encourage substantive debate on the evidence by knowledgeable proponents of all points of view.
  3. Arguments from authority carry little weight — “authorities” have made mistakes in the past. They will do so again in the future. Perhaps a better way to say it is that in science there are no authorities; at most, there are experts.
  4. Spin more than one hypothesis. If there’s something to be explained, think of all the different ways in which it could be explained. Then think of tests by which you might systematically disprove each of the alternatives. What survives, the hypothesis that resists disproof in this Darwinian selection among “multiple working hypotheses,” has a much better chance of being the right answer than if you had simply run with the first idea that caught your fancy.
  5. Try not to get overly attached to a hypothesis just because it’s yours. It’s only a way station in the pursuit of knowledge. Ask yourself why you like the idea. Compare it fairly with the alternatives. See if you can find reasons for rejecting it. If you don’t, others will.
  6. Quantify. If whatever it is you’re explaining has some measure, some numerical quantity attached to it, you’ll be much better able to discriminate among competing hypotheses. What is vague and qualitative is open to many explanations. Of course there are truths to be sought in the many qualitative issues we are obliged to confront, but finding them is more challenging.
  7. If there’s a chain of argument, every link in the chain must work (including the premise) — not just most of them.
  8. Occam’s Razor. This convenient rule-of-thumb urges us when faced with two hypotheses that explain the data equally well to choose the simpler.
  9. Always ask whether the hypothesis can be, at least in principle, falsified.

Propositions that are untestable, unfalsifiable are not worth much.

Consider the grand idea that our Universe and everything in it is just an elementary particle — an electron, say — in a much bigger Cosmos. But if we can never acquire information from outside our Universe, is not the idea incapable of disproof? You must be able to check assertions out.

Inveterate skeptics must be given the chance to follow your reasoning, to duplicate your experiments and see if they get the same result.

Sagan writes:

In addition to teaching us what to do when evaluating a claim to knowledge, any good baloney detection kit must also teach us what not to do.

He admonishes against the twenty most common and perilous ones — many rooted in our chronic discomfort with ambiguity with examples of each in action:

  1. ad hominem
  2. argument from authority
  3. argument from adverse consequences
  4. appeal to ignorance
  5. special pleading,
  6. begging the question, also called assuming the answer
  7. observational selection, also called the enumeration of favorable circumstances
  8. statistics of small numbers
  9. misunderstanding of the nature of statistics
  10. inconsistency
  11. non sequitur
  12. post hoc, ergo propter hoc
  13. meaningless question
  14. excluded middle, or false dichotomy
  15. short-term vs. long-term
  16. slippery slope,
  17. confusion of correlation and causation
  18. straw man
  19. suppressed evidence, or half-truths
  20. weasel words

Like all tools, the baloney detection kit can be misused, applied out of context, or even employed as a rote alternative to thinking. But applied judiciously, it can make all the difference in the world — not least in evaluating our own arguments before we present them to others.

 

Best and Worst Science News Sites

Infographic: The Best and Worst Science News Sites | American Council on Science and Health – By Alex Berezow March 5, 2017

One thing experience has taught us is that some news outlets are better than others. Some journalists really do care about reporting the news as it is rather than the way they would like it to be. So, in an effort to promote good science news sources while castigating the bad, we teamed up with RealClearScience to create an infographic.

Continue reading

How to Be Broke & Afford Medical Care

How to Be Broke & Medicated – for People with Fibromyalgia and ME/CFS – by Lily Silver | Health Rising’s Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Forums

Free or Discounted Meds, Supplements & Assistance (in the US)

If you can’t afford the treatment you need, don’t give up hope just yet. Try these things first.

Rest assured, these programs do work. How a Bunch of Different People Got a Bunch of Different Meds Real Cheap. If these folks can do it, you can do it too!

Lily then gives a well-organized list of resources with links for the following kinds of benefits: Continue reading

How to read and understand a scientific paper

Impact of Social Sciences – How to read and understand a scientific paper: a guide for non-scientists

From vaccinations to climate change, getting science wrong has very real consequences.

But journal articles, a primary way science is communicated in academia, are a different format to newspaper articles or blogs and require a level of skill and undoubtedly a greater amount of patience.

Here Jennifer Raff has prepared a helpful guide for non-scientists on how to read a scientific paper.   Continue reading