Current trial: Reducing Orthostatic Intolerance With Oral Rehydration in ME/CFS Patients 2019 - New York Medical College

Sly Saint

Sly Saint

Senior Member (Voting Rights)
Brief Summary:
We and others have shown that many younger patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) have orthostatic intolerance (OI), i.e., they can't tolerate prolonged standing. OI in ME/CFS is often accompanied by either postural tachycardia syndrome (POTS) in which standing results in an excessive heart rate, and neurally mediated hypotension (NMH) in which standing causes a fall in blood pressure and fainting. Intravenous fluids can alleviate these symptoms, but is difficult to administer; oral fluids fail to provide the same benefit. We would therefore like to test the effectiveness of an oral rehydration solution (ORS, W.H.O. formula) making use of co-transport of glucose and sodium, to reverse these symptoms in ME/CFS subjects with POTS or NMS, and will compare these results with healthy control subjects.
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https://clinicaltrials.gov/ct2/show/study/NCT02854683
 
While it seems a good idea to study OI and potential treatments my impression is that this study is badly planned in all sorts of ways. Blinding is likely to be a problem for comparing IV saline with salty sweet rehydration fluid by mouth. I don't understand why they think either of these will be any use and I don't see any hard data on that but maybe we should see what happens.

The tests they want to do all seem to me much too complicated. The real question is whether or not either treatment will produce a prolonged rise in central venous pressure that can maintain what System calls preload. It has just struck me that with modern Doppler ultrasound it might well be possible to fit a simple non-invasive ambulatory sensor on the lower neck that images blood in central veins (superior vena cava) and gives a real time indication of preload. If that was combined with either a wee-bag or strict instructions to record all urine output then the physiology would be adequately defined. My guess is that whatever fluid you give the central pressure will go up a bit for twenty minutes or so and then you will pee and it will come down to where it was.
 
deleder2k said:
Has anyone that suffers from OI and ME tried this out?
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I think that any rehydration packet or sports drink equivalent does pretty much the same effect.

The POTS and dysautonomia community always recommends it so there is some validity to the fact that it helps. Probably not much, but enough to be noticeable.

I've done a few tests, need to do more. It helps a bit with weakness, dizziness and lightheadedness when they are especially strong.
 
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