Dear HU operators. Being taken to the... - Cure Parkinson's

Cure Parkinson's

25,908 members27,218 posts

Dear HU operators. Being taken to the beginning of a thread instead of the actual comment is not an insignificant change --

MBAnderson profile image
20 Replies

-- 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

Written by
MBAnderson profile image
MBAnderson
To view profiles and participate in discussions please or .
20 Replies
marcet profile image
marcet

I fully agree

MBAnderson profile image
MBAnderson in reply to marcet

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.

Juliegrace profile image
Juliegrace in reply to MBAnderson

It’s fixed.

sharoncrayn profile image
sharoncrayn in reply to MBAnderson

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

MBAnderson profile image
MBAnderson in reply to sharoncrayn

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

sharoncrayn profile image
sharoncrayn in reply to MBAnderson

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

bookish profile image
bookish

Let's hope it works this time too - I'm glad you posted because this has been driving me nuts today x

vwolff profile image
vwolff

I am confused by your request "please change it back"? Change what back? What am I missing?

MBAnderson profile image
MBAnderson in reply to vwolff

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.

ion_ion profile image
ion_ion

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.

MBAnderson profile image
MBAnderson in reply to ion_ion

Good. I'm really glad they put it back the way it was.

Thank you HU.

chartist profile image
chartist in reply to MBAnderson

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

pdpatient profile image
pdpatient in reply to chartist

Art, I suggest that we use the word "hallucination" in this forum judiciously😂. You had me worried for a second.

chartist profile image
chartist in reply to pdpatient

I had me worried for a second too!!!

Art

aspergerian13 profile image
aspergerian13 in reply to MBAnderson

Thx for the upfollow.

gwendolinej profile image
gwendolinej

Me too 😆

aspergerian13 profile image
aspergerian13

I AGREE, VEHEMENTLY !

Godiv profile image
Godiv

Thank you so much! It does seem to be working. Yay.

FMundo profile image
FMundo

Please let's not have changes like this made without consulting people. Sounds like an apology wouldn't Be inappropriate . .

in reply to FMundo

I suggest it was a bug. They fixed it within 24h. Let's not get carried away.

You may also like...

CBD for Essential Tremor.

Hi. I am using CBD now, it has been a week, no change so far. Please comment. I am by the way...

Winnie the Poo's glove building adventure

start a new thread, because my previous threads had become a bit cluttered. But please still refer...

Why Am I Taking Butyrate?

supplements. This thread is to make the case for Butyric Acid - Butyrate. I started taking it...

5-HTP / serotonin and symptom reduction

Update: See comment below with a link to another thread that discusses a serious danger with 5HTP...

What PwP need is regular rigorous exercise motivations NOT more levadopa

the thread \\"is levadopa neuroprotective?\\" 1. Levadopa is NOT directly neuroprotective 2. Long...