ME and Ophelia

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COULD TESTING THE BLOOD FLOW OF M.E. PATIENTS -
Lead to a treatment for orthostatic intolerance?

Every Myalgic Encephalomyelitis (M.E.) patient that I know, complains of orthostatic intolerance. In other words, their main problem is staying vertical. Length of time that a seriously affected sufferer manages to stay vertical each day, varies greatly. For me, when this intolerence occurs, it feels like the body and central nervous system go into medical shock, like my skeleton is collapsing - and will do if it does not get horizontal right away. It is a traumatic and hellish experience that makes one feel very ill as a result. I wonder if testing the blood flow of M.E. patients might help researchers to find the right treatment for CFS/ME.

I've read a book by an American doctor. I think it was called the Faces of CFS/ME. His name may have been Bell. He was familiar with CFS/ME patients. And did research on blow flow and experimented with M.E sufferers. One patient with classic M.E. whose orthostatic intolerence was about the same as mine (15 minutes or less) was given a pair of special trousers to wear. The trousers, or body suit (I can't quite recall the details) was a sort of medical appliance that could be put onto a patient - and then inflated - to keep the body rigid. I suppose the sort of thing one might use on a patient with spinal injuries who needs to be transported on a bumpy journey.

Whilst wearing these trousers, she was made to stand up against a wall and talk. Predictably, within minutes, it exacerbated and escalated her symptoms to the point of (what I describe as shock) collapse. However, just as she was reaching that point, the trousers were inflated. So she remained standing upright. The inflated suit had taken the pressure from her body. The suit was keeping her upright. As quickly as her symptoms escalated, was as quickly as they subsided - the moment the suit was inflated.

I've heard from another M.E. patient about a tilt-table test she was given. And from another who is convinced her problems are to do with blood flow. Dr Bell mentioned something about M.E. patients having less blood than normal. I'll have to read the book again to get the details correct.

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ORTHOSTATIC INTOLERANCE
Etiology by Vanderbilt University Autonomic Dysfunction Center

Orthostatic Intolerance Etiology:

The etiology of OI is unknown. For many years, such patients were felt to have deconditioning and were encouraged to pursue a more vigorous exercise regimen. However, recently it has become clear that many individuals with these symptoms have a more serious problem than mere deconditioning. The onset of OI is often predated by a recent viral infection. Patients can undergo extensive clinical evaluation without identification of a specific abnormality, and therefore most patients remained undiagnosed.  These difficulties are compounded by the heterogeneity of disease states in patients with orthostatic symptoms, spontaneous fluctuations in disease severity, and no uniformity in nomenclature of disease classification. Another problem in the diagnosis of OI is its overlap with other conditions such as Chronic Fatigue Syndrome (CFS), Neurally Mediated Syncope (NMS), physical deconditioning, etc. Improving characterization of the underlying circulatory responses may lead to a clarification of some of those issues, and will facilitate the discovery of the pathophysiology of OI.
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Note to self: It's interesting to recall what doctors said for years about M.E. is what for many years they were saying about OI, quote: "...such patients were felt to have deconditioning and were encouraged to pursue a more vigorous exercise regimen. However, recently it has become clear that many individuals with these symptoms have a more serious problem than mere deconditioning..."

Our National Health Service has spent millions of pounds on introducing psychcological based treatments (CBT) and graded exercise therapy (GET) for CFS patients (amongst which they insist that M.E. falls under the umbrella of Chronic Fatigue). Many seriously affected M.E. sufferers have reported that CBT/GET worsens their condition.