-- because most comments occur somewhere in the body of a thread and the change makes it nearly impossible to find the comment in threads that have long discussions.
I believe it will discourage people from using the website because finding a comment in a thread with several dozen comments is a real pain in the butt.
Please, please change it back
I fully agree
It worked this time, i.e., it brought me to your comment instead of the top of the thread.
I hope that works for everybody.
It’s fixed.
Since you are so influential, perhaps you can get them to install a "key word" search engine like most word processors have (i.e. ms word). The current search engine apparently simply searches in the titles for a word, like APO, not within the comments.
While you are on it, any chance you can get DR G or Dr. J to provide you the # of individuals they have interviewed since 2011, the number they accepted, and actual # of interventions. Since it has been approved by FOPH, what is the universal count for all Swiss interventions since approval? (this info would give us an idea of how applicable the intervention is beyond Dr. G and Dr. J?) Supposedly, they should be able to send you a complete dump of data from their Dec. 2018 report with at least a 12 month follow-up on all the intervention of 2017-2018 at this point in 2020.
What about the # of "iterations " in their intervention protocol since their start in the early 1990s, or even from 2011.
Would love to know why their inclusion/exclusion criteria used both "therapy resistance" and "insufficient efficacy of L-Dopa dosed up to at least 600 mg L-Dopa equivalents per day, with symptom control during maximum 50% of the day," 600 mg. is a starting point in my experience with my support groups going back to 2010, not an end point.
Can they list what specifically were exclusionary "medical contradictions"?
consistency of the intervention + its applicability over multiple sites + the ability to replicate the initial efficacy + the broad universality of the intervention = broad acceptance and implementation or limited acceptance.
Sharon
Ms. Crayon,
"... so influential..." Ha. I agree with Chris, it was some kind of accidental 'bug.'
A more articulate search function has been suggested many times.
Sorry, but I'm not not going to ask Dr. J for this information. You can ask him yourself if you want, but please don't mention my name if you do. (I suspect much of it is public/available if we look hard enough.) I'm halfway home, committed and well beyond the point of no return. It is hardly in my self-interest to risk him thinking I'm questioning the integrity of his data, because I don't.
My wife and I have spent many hours with him and his staff talking about this procedure and PD in general. I consider myself a good judge of character and we have 0 concerns with the quality of what we have been told or the information made public or his motives.
Since doubting the integrity of the reported outcomes necessarily encompasses motive, Id like to address that. I suspect some people's initial reaction to the fee, is that it's high.
His office is on the campus of a 'boutique' hospital complex and every pre-op and post-op test are subcontracted. When I had a sham pallidotomy, the hospital routinely made the mistake of sending me the bills for everything, so I have a good idea of the charges for 3 MRIs, use of Insightec's software, overnight hospital stay, Datscan, EEG, physical exam, blood panels, his staff, etc. and it is clear he has a bad accountant, that is, he could not be doing this for the money. Actually, I'm impressed the fee isn't higher.
If doctors in the US charged comparable fees for comparable work, were similarly motivated and were as available and as communicative, there would not be a single complaint on this forum about them.
marc
I will wait for their next case study. I sincerely hope your progression remains at your current level over the next 6-10 years. If it does,I think you have spent your money wisely.
Many doctors in the US are very motivated, compassionate, and communicative in my experience (the care they provided in Covid-19 is a good example). We could discuss this at length, but I doubt it would change anyone's mind who feels otherwise.
Got to get back to business.
Sharon
Let's hope it works this time too - I'm glad you posted because this has been driving me nuts today x
I am confused by your request "please change it back"? Change what back? What am I missing?
For a brief period, the reply link in our email was taking us to the top of the thread instead of the comment, so you would have to look it every comment to find the new one.
Marc, it seems they put it back! I noticed that, too! Probably some people did not notice and they do not know what do you talk about.
Good. I'm really glad they put it back the way it was.
Thank you HU.
Marc,
I'm glad you mentioned it as I thought I was hallucinating yesterday when I kept ending up at the original post instead of at the reply I wanted to read!
Art
Thx for the upfollow.
Me too 😆
I AGREE, VEHEMENTLY !
Thank you so much! It does seem to be working. Yay.
Please let's not have changes like this made without consulting people. Sounds like an apology wouldn't Be inappropriate . .
I suggest it was a bug. They fixed it within 24h. Let's not get carried away.
Ambroxol SuppliersIt's hard not to LUV a dog. (I wanted to add this as a comment in the Rate of Progression thread, but HU does not allow It, but should.)IF YOU HAVE BEEN READING, BUT NOT POSTING, THIS IS FOR YOU.Lena McCullough gave me permission to post her 1st comment upon having her 2nd MRg FUS PTT this morning in Solothurn, Switzerland.
Why Am I Taking Butyrate?
