Systemic Manifestations and Health-Related Quality of Life in Joint Hypermobility Syndrome/Ehlers-Danlos Syndrome-Hypermobility Type – Sydney Medical School, Discipline of Biomedical Science – Krahe, Anne
Joint Hypermobility Syndrome/Ehlers-Danlos Syndrome-Hypermobility Type (JHS/EDS-HT) is a hereditary connective tissue disorder associated with both musculoskeletal and systemic manifestations.
There is increasing recognition of the significance of the non-musculoskeletal manifestations of the disorder, such as
- orthostatic intolerance,
- gastrointestinal symptoms and
- psychological features, Continue reading
Routine bumps injured her joints, but finding the reason took half a century
Louise Carroll was just 7 years old when an accidental bump into a sofa turned into a major injury. Most kids might have ended up with a bruise or a scrape; Carroll dislocated her knee. Then she popped it back into place.
That is Carroll’s first memory of what would become a common occurrence: An everyday mishap causing major, and painful, damage to her knees, wrists, and other joints. Yet it took half a century — and consultations with doctors on the other side of the globe — to figure out why Carroll, now 59, was so prone to injury.
Just reading this far, I already suspected EDS. Carroll’s story is the typically sad and frustrating experience many with EDS have to suffer through. Continue reading
Blood test: Scientists crack code of chronic fatigue syndrome’s inflammatory underpinnings | Scope Blog – Bruce Goldman on July 31, 2017
A new study led by Stanford chronic fatigue syndrome expert Jose Montoya, MD, and published in the Proceedings of the National Academy of Sciences has linked chronic fatigue syndrome to variations in 17 immune-system signaling proteins, or cytokines, whose concentrations in the blood correlate with the disease’s severity.
The findings strongly suggest that inflammation is a powerful driver of this mysterious condition, whose underpinnings have eluded researchers for 35 years. Continue reading
Hypermobility Syndromes Association » Hormones & Hypermobility – By Alan Hakim, Updated August 2017.
Which hormones are involved?
A hormone is sometimes described as a ‘chemical messenger’ that is secreted from a gland, circulates through the bloodstream and, finally, reaches the organ at which it is directed where it exerts its effect.
Although there are many types of hormones, all of different structures, two main groups are relevant to hypermobility. Continue reading
Exercise Tests Suggest Autoimmunity Causes the Exertion Problems in Chronic Fatigue Syndrome, Fibromyalgia and POTS – Health Rising – by Cort Johnson | Aug 16, 2017
Researchers and doctors get interested in ME/CFS in different ways. Many have a personal connection, but for David Systrom, a pulmonologist, it was all about demand.
He didn’t seek chronic fatigue syndrome patients out – quite the contrary. When Systrom was given control of a clinical cardiopulmonary lab, he started doing invasive cardiopulmonary exercise tests (iCPET’s) on people with exercise intolerance.
Invasive Cardiopulmonary Exercise Testing (iCPET) Continue reading
“Catastrophizing” – Thomas Dikel – Medium – Aug 2017
Mr. Dikel seems to have the same feelings about catastrophizing that I do:
I REALLY am starting to resent, not quite hate, but getting close, the use of the word “Catastrophizing.”
What it’s supposed to mean is a distortion in thinking in which something that isn’t that big a deal is made out to be a bloody CATASTROPHE! Its been described as always presuming the worst, making things worse than they are. Continue reading
Forced Exercise With CBT Fails for CFS – Journal of Health Psychology – August 29, 2017 – free full-text Research Article
The results of this study showed what patients have known all along:
For sufferers of CFS/ME,
exercise is the problem, not the solution,
it’s in the body, not the mind.
Cognitive behavioural therapy and graded exercise theapy are promoted as evidence-based treatments for myalgic encephalomyelitis/chronic fatigue syndrome.
This article explores patients’ symptom responses following these treatments versus pacing therapy, an approach favoured by many sufferers. Continue reading
CDC Removes Reference to Disputed Chronic Fatigue Therapies From Website – 07.26.2017 / By David Tuller
This is another case of the CDC promoting faulty therapies for chronic illness.
I used to think that the CDC, with its access to all global research, was the final authority on general health care. But now I’m disillusioned about this powerful government agency after finding nonsense therapies being promoted for other problems, like chronic fatigue, not just chronic pain.
For years, the U.S. Centers for Disease Control and Prevention recommended two controversial treatments for ME/CFS, the illness often known as chronic fatigue syndrome:
- a program of steadily increasing activity, and
- a specific form of cognitive behavior therapy. Continue reading
Major Stanford Study Indicates Chronic Fatigue Syndrome (ME/CFS) is Inflammatory Disorder – Simmaron Research By Cort Johnson – August 11, 2017
The study examined the levels of a very large number of cytokines (n=51) in the blood of a very large number of patients and healthy controls (ME/CFS=186; healthy controls= 388). Age, sex, race and something called “nonspecific binding” were accounted for.
One of the biggest ME/CFS immune studies ever undertaken, done at a top University, this was a study that we dearly didn’t want to fail.
This is the kind of study likely to be labeled “definitive”. Continue reading
Structurally Unsound – TMC News – Sarrah Hannon wants to demystify Ehlers-Danlos Syndrome – By Mary Vuong | August 03, 2017
Sarrah Hannon once led an active life of triathlons, marathons and rock climbing.
Now she refrains from lifting a gallon of milk.
Hannon, 30, lives with Ehlers-Danlos Syndrome (EDS), a group of genetic connective tissue disorders. The most abundant protein in her body, collagen, is failing her. Continue reading