I’ve read bits and pieces by you and about you, for years. I watched your TED presentation. Something you said in that really resonated with me: “we’ve had to become our own medical reseatchers” (something like that).
Now you say: “…Angry how unlikely it was in this medical system that, even if I had lived another fifty years, I would ever have found out what was causing my symptoms…”
I’ve had a similar experience, with Fibromyalgia. I’ve written a little about it elsewhere. My intuitions about what was wrong with me, and how to overcome it, are being confirmed now by research findings about the muscle fascia and interstitial fluids. How long it might take this research to filter into mainstream medical diagnosis, and even to be applied to Fibromyalgia; who knows?
In your case it was something highly specific causing a cascade of dysfunctions — I’m so glad you discovered it. In my case, and the case of most people with Fibromyalgia, I think there is something body-wide going on with the muscle fascia and its properties around lubrication and tactility. But many people with something else — especially EDS — get diagnosed with Fibromyalgia when in fact what they have is a similar pattern of pain, caused by something else. In their case it is hypermobility; in mine (and most FM cases, I believe) it is the exact opposite: fasia is “stuck”, stiff, inelastic, prone to pinching, forming knots, and tearing.
I think you are absolutely right to argue that CFS is a diagnosis that ends up getting applied to people with all sorts of different underlying problems. It seems that diagnosing CFS can be about as useful as diagnosing “a headache” — how about getting at what is causing the headache? Getting at what is causing the CFS is the same general thing. Fibromyalgia suffers from the same problem to a lesser extent, because it is often diagnosed for people with EDS, and people with thyroid issues, that are diagnosable and treatable in their own right.
I also suspect that many people with FM are diagnosed as having CFS purely because the muscular dysfunctions cause premature exhaustion. Starlanyl claims that the same basic limb movement in some people with FM, takes 3 times as much effort because of the adhesions in fascia versus normal properly lubricated tissue. I believe that the “fascia chains” through the body multiply the local effects of adhesiveness so that a complex whole-body activity like walking is exponentially more tiring than for a normal healthy person.
It’s only now that I have largely recovered, that I understand just how abnormally debilitated I was. It’s like a nightmare where you are trying to flee from some danger, but some unseen forces are “freezing” your ability to move! If I’m right about the fascia dysfunctions, why was this so hard for medical experts who are looking at the human body all the time, to hypothesize and test? A big answer to this (from Sharkey and colleagues) is that dissected cadavers might reveal very little about the amazing rapid property-changing going on in human tissue during actual life and movement. Tissue in dead bodies has become the orthodox “understanding” of tissue, period!
Sorry for the digression and “so much about me”.