"LIBERATED", please help on Dr Sclafanis thread

[Rose2]

Bestadmom,
OK. I am out of the loop. Where would you like me to post this?
thanks; Rose

[bestadmom]

Rose, it's fine, it's not where I want anyone to post their tracking, it's that I don't want to read everyones tracking info on Dr. S's thread.

[Rose2]

bestadmom,
i think I am getting it. I don't read Dr. S's thread that much but agree it should be kept clean for questions to him and answers from him.
I would never put my story there. It does seem like herding cats around here sometimes, huh?
Sincerely, Rose ;)

[NZer1]

Sorry!
I agree that it will be best to post on an independent thread.
Here would be good. I wanted to continue what Dr S has been asking of his followers, regarding how we as a group can help with design of symptoms tracking that goes beyond what is currently used, as it is not the best system for CCSVI. The tracking needs to address the changes of symptoms during and after CCSVI treatment.
The EDS and peg boards are not subtle enough to be noticed and start a direct investigation into the reason for the improvement. What causes even very small changes such as the temperature changes, bladder etc.
Didn't intend to clog the veins of Dr S thread.

[drsclafani]

NZer1 started this thread by asking for people to post the liberation experience in Dr. Sclafani's thread, which has turned into a free for all of patients hijacking the conversation in the past two days.

We have a tracking thread and I'd prefer to not sort thru pages of errant posts to get the info the topic is supposed to be about.

gEEZ

I have been so busy i havent checked my thread for a couple of days. This is the first thing i have read. I was very happy to read the ideas that were being shared about how to design and measure the treatment results. I guess i better go check things out.

But if any of you have ideas of how to measure and evaluate therapy, then please share your ideas with the people who have had about 100,000 reads of that thread. Not necessary to tell your entire story, but some of you have had some negative experiences and I, and other investigators would appreciate some guidance of what to look for and record.

we will need to learn
1. success
2. failure
3. precursors of failure
4,. recurrent symptoms and how they evolve
5. secondary treatments
6. anything you can contribute.

I am not looking for kudos for myself or other treaters, only advice from the patients. I believe strongly that the measures we look at must include measures that are important to the patients.

thanks

sal
5.

[NZer1]

Bump Please read Dr S' request