CureOrBust wrote:In relation to HBO, making a general statement, most rigorous published papers have not found a significant benefit, and hence its not part of the standard treatment by a neurologist. But unlike CCSVI, it is simpler to "get right" and has been around for many years. Since around 1970?
I would suggest that this is not a question of whether the average MS patient benefits, coompared with no-HBO pwMS. You could proceed further with that alone, from the premise that CCT is influenced by neck vein stenosis, and then test first whether the best 1 or combined tests was at all different with the patients standing up vs lying down.
But what I would be interested in is whether there was any difference in various outcome measures (inlucing CCT, as Cece pointed out), say in the first year, in different cohorts of different ages, in people specifically recently treated, with the CCSVI procedure
for MS, with lying-down-HBO, compared to age (group or exact) matched pwMS , who were treated in the same way by the same doctors for CCSVI recently, without HBO. You would have to find co-operating HBO facilities and the same CCSVI physician (who uses IVUS), so you would also have had to get their co-operation.
Of course it would be blinded as much as possible.
Because those requirements would likely be too restrictive, probably that would be impossible to do any time soon. Unfortunately the number of subjects willing to do it would be few, it is probably a pipe-dream unless some angel-type funding happens.
In the meantime it will just have to go on the list, with moderate exercise, swimming if you can, weight training and aerobic, and the new diet you prefer, of things that might improve your chances. There is even more new evidence
http://news.yale.edu/2015/02/16/anti-in ... g-revealed, and a drug being tested in Ireland, based on an endogenous protein that slows or halts the MS inflammation, as well as bountiful anecdotal cases, that shows a change in diet is probably going to be necessary to get optimum results. The one cheerleader recommends can be found on
http://www.ccsvi.org. Or just google
diet for endothelial health. If I had the $ I would do the HBO, based on the anecdotes. But that's just me. Where $ doesn't get in the way, most people weigh what they know and their guts.
In fact I would collect as much survey-type evidence as possible, on all pwMS who are in control groups, including diet and exercise, whenever I ran a trial to test an MS treatment. It is not usually collected, that I know of.
Many controversies can be successfully resolved that way, if a clinical trial gets this kind of information as a general rule. That would be my idea of the scientific role of the MS Society; not just the usual, but also compiling information, and making recommendations to investigating doctors, on the kinds of things which need surveying, current controversies, etc. They are in a good position to collect data long term. That might shed a lot of light.
Anyway, BHO helps healing. This is a question of whether it helps CCSVI patients heal from the procedure. If I had the bucks, I would use it after any procedure whose outcome is uncertain. Uncertainty is certain with this one, isn't it?
