Cece wrote:drsclafani wrote:How does one measure improved tolerance to hot weather
Do a quick neurological exam, crank the heat in the room, wait twenty minutes, do the neurological exam again? Or have them do a crossword puzzle, stick them in a hot room for an hour, then do a crossword puzzle again? Hypothesis being that liberated patients would maintain their abilities to do the puzzle, measured in time and errors, while nonliberated would experience a drop-off in abilities.
For depression, there is the Beck Depression inventory.
I'd bet a neuropsychologist has a test for mental confusion.
Even small improvements could be enough to be statistically significant.
eric593 wrote:Like Cece says, there's ways to measure heat tolerance. Putting someone in a hot bath, then testing the reflexes or walking speed, etc., is a very old method.
I think that the journey is turning a full circle in some ways. The money used in research needs to be directed by people wanting knowledge on cause not profits into the future.
It is sad that the work of so many learned and caring Dr's (BIG plug for our favourite Dr. S ) have been hamstrung by the lack of foresight of the research profession.
MS Societies in particular need to be more proactive in getting the dollars driving the search to look for cause!
At the moment there is no way to compare treatment against non treatment that will show benefit of any treatment in a true/ real/ measurable manor.
There needs to be a BIG change in knowledge about our disease happening in parallel to the work of these brilliant crusaders who have made the stand to further our options.
I'll fall off my soap box now as my TN is killing me!
Enjoy your day.
Someday wrote:Thank you for your reply - and most especially your assurance that you and your team will figure out how to address compassionate therapies for these patients who cannot be included in the trial.
drsclafani wrote:as i suggested to colleagues, we need a comparaitive intent to treat study. each diagnostic test would be described. each of several investigators would read the evaluation of the test and make a treatment plan based upon that imaging. Then the group would convene to look at all of the imaging and come to consensus of intent to treat. Then compare the results of each test by each proceduralist to the consensus.
NZer1 wrote:I think that the journey is turning a full circle in some ways. The research that has been done to date has been driven by the almighty dollar. To often the research has been about modifying our disease and at the sacrifice of understanding its cause. Money can be made for ever if the cause is not found and understood. The money used in research needs to be directed by people wanting knowledge on cause not profits into the future.
drsclafani wrote:There needs to be a group that thinks it got the treatment but didnt to compare to the group that got the real deal.
After all, we have been quite vocal about the fact that we are not treating MS.
Cece wrote:Someday wrote:Thank you for your reply - and most especially your assurance that you and your team will figure out how to address compassionate therapies for these patients who cannot be included in the trial.
I think the IRB that's watching over Dr. Sclafani's study would have to grant an exception and allow compassionate treatment done by him, just not included in the study, for those who are at an 8.5 or higher. I hope if that's the case that they would.
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