Syndrome A: ME/CFS, Autism, Ehlers-Danlos Syndrome, Mast Cell Activation Disorder & The Spectrum Of Related Illnesses
I have an illness called Myalgic Encephalomyelitis (ME). In the United States, ME is also called Chronic Fatigue Syndrome (CFS) or sometimes these are combined into ME/CFS. ME/CFS can cause a range of symptoms. Two of the most apparent are a disabling exhaustion that won’t go away and a tendency to feel worse with exercise or activity.
I also have a condition called Ehlers-Danlos Syndrome (EDS). EDS is a connective tissue disorder that makes many of my joints excessively flexible.
In my thirties, I was diagnosed with an autism spectrum disorder.
Each of these conditions is rare, affecting no more than a few percent of the population. In fact, the odds that I would have three conditions this rare is somewhere around 1 in 500,000. In the United States, there should be less than 700 people total that share my three conditions. I should seldom or never meet anyone else with my exact set of illnesses. And yet it’s easy to find us.
A Venn Diagram
Right now we have more questions than answers about Syndrome A, the name I give to my cluster of illnesses.
EDS affects connective tissue, causing skin, tendons and ligaments to be stretchier and more delicate than usual. A large proportion of people with ME/CFS have had EDS since childhood. Why would a mechanical disorder of the skin, tendons & ligaments precede a devastating, persistent flu-like illness many years later?
The geneticist that diagnosed me with EDS researches autism as well. He told me that when a parent has EDS, their child is often autistic. Why would a disorder of connective tissue in the parent be linked to a profound brain disorder in a child?
Syndrome A is not limited to autism, EDS and ME/CFS. Other overlapping conditions include chronic pain disorders, ADHD, irritable bowel syndrome, interstitial cystitis, mast cell activation disorder, food intolerance, migraines, endometriosis, and various autonomic dysfunction disorders. We form a complex 3-dimensional Venn diagram of illnesses, conditions and proclivities.
A Blog For Observation
Our symptoms are very often attributed to “stress”, anxiety, hormones and sometimes simply to being female. We are said to be exaggerating to attract attention or symbolizing long forgotten psychological trauma in the form of illness and pain. Instead of being helped, we are given the diagnosis that our thoughts, beliefs, emotions or personalities cause our physical symptoms.
Multiple sclerosis was called hysterical paralysis before brain imaging advanced enough to view the lesions occurring in the brains of people with MS. We once thought that stomach ulcers, ulcerative colitis and asthma were due to unconscious psychological conflicts. We are currently coming to grips with the fact that attitude does not determine the outcome of cancer treatment. The diagnosis of emotional causation falls away as soon as we understand the mechanisms of illness.
Science begins with observation. This blog is a forum for our stories to be told and our connections to become clear.
The name Syndrome A is a reference to Syndrome X. Syndrome X is what medicine calls the cluster of interrelated factors that increase the risk of diabetes and heart disease. Components of Syndrome X include high blood pressure, high blood sugar, high cholesterol and belly fat. Syndrome X factors and the resulting diseases are all connected by a certain kind of metabolic problem.
This metabolic problem is caused by eating a high calorie diet and not exercising enough, a common lifestyle in many modern countries where diabetes is now epidemic.
Syndrome X is also called “the metabolic syndrome”, which suggests it is the one metabolic problem that we are very likely to encounter. There may actually be another metabolic problem that is common in the population, however.
In the cases of ME/CFS and autism, emerging research suggests that these are also metabolic syndromes, but of a different sort. This new research suggests that these two conditions share a closely related metabolic dysfunction, one that entails lowered energy production. Do the overlapping condition that constitute Syndrome A also share this metabolic problem?
The A in Syndrome A is for autism, but I also chose it because it is the first letter in the alphabet. I believe the factors that cause Syndrome A predate those modern factors that now commonly trigger syndrome X. I think the causes of Syndrome A may have been with us a long time, so A is also for ancient. An inflammatory process, long triggered by common events.