[Bob Dawson]

Mayo Clinic deleted Anuket’s comments

Video from Mayo Clinic saying that one in five Parkies is a destructive gambler or hypersexual, and that one in five is underestimated because many Parkies do not reveal that they have turned into sex maniacs. Although they also proclaim that they did not meet with, talk to, or listen to anybody who has Parkinson’s. The usual. So Anuket, who has had PD for many years, wrote 6 comments in their comments section – short paragraphs, each one revealing some aspect of the questionable conclusions of the research. And within hours the world-famous Mayo Clinic deleted all her comments. The conversation is going on right now:

bobulli (8 seconds ago)
You know, you say in the video that you did not even meet or talk to or listen to any Parkinson's patients in doing your research about Parkinson's disease, and Anuket, who has Parkinson's, writes in to contradict your research, and you delete all her posts. We are so, so very accustomed to being treated like that. Let's see now, one in 5 - that's 300,000 hypersexial gamblers. Where are they? I have met 300 Parkies. And did not get laid. Find me the 20%
bobulli (7 minutes ago)
And I will be supporting Anuket at my site, parkinsons dance at blogspot. There are about 300 of us here and we all have Parkinson's, and we are very very tired of being told we are the ones who have to whisper.
anuketscrusade (13 minutes ago)
anyone who reads this before they delete it, i raised several questions about this study and posted them here a day or two ago. rather than addressing them, they have deleted them. i will be posting the same questions and several additional issues on my blog anukets crusade.
bobulli (2 weeks ago)
Of 1,500,000 Americans with Parkinson's, how many gambling, sex-crazed Parkies did you find? You say one in five people... and you say you found SEVEN PEOPLE who, knowing they have a fatal disease, go nuts on gambling and drugs and sex. Now it is harder for us to get jobs, apartments, bank loans, because the press have run wild with this exciting story, that drugs-crazed Parkie gamblers are not to be trusted.
HappyandBetFree (1 month ago)
1 in 5 an UNDERESTEMENT?


Mayo Clinic video on You Tube:
One-in-5 Parkies is a destructive addict or hypersexual in ways too embarrassing for the scientist to talk about on TV. Although he did not hear that it was embarrassing for anyone with Parkinson’s because he did not talk to anyone with Parkinson’s. We are getting so tired of this.
http://www.youtube.com/watch?v=3oNkY...eature=channel

[Bob Dawson]

Here are the comments from Anuket that the Mayo Clinic deleted from the comments section of a video about Parkinson's research, concluding that at the least 1 in 5 Parkies is destructive, addicted to gambling and / or hypersexual. Anuket did not belief they have evidence to say that. So they deleted what she said.:
anuketscrusade (6 hours ago)
I beg who sees this to read the actual study - not just the abstract, the whole study google mayo clinic proceedings, 2009;84(4):310-316 the pramipexole package insert can be found at drugs@fda, search on pramipexole- check my facts, please!!
anuketscrusade (6 hours ago)
2)For 4 out of 7 patients, there is no stated temporal relationship btw initiation/increase or cessation/decrease in dopamine agonists & certain behavior in the absence of a temporal relationship, on what basis are you claiming the existence of an association between the drug and the behavior?
anuketscrusade (6 hours ago
3)2 out of those 4, in addition to having no stated temporal relationship, are footnoted as not clearly pathologic well, you cant have your cake and eat it too if they arent pathologic, then they are not eligible for inclusion in a study with pathological as an inclusion criterion
anuketscrusade (6 hours ago)

4)you define 2mg/day or greater as therapeutic dosage of pramipexole but according to the package insert, doses of 3 mg, 4.5 mg, and 6 mg per day of MIRAPEX tablets were not shown to provide any significant benefit beyond that achieved at a daily dose of 1.5 mg/day.
anuketscrusade (6 hours ago)

5)You exclude 28 of the 66 people taking agonists on the basis of this never before heard and according to the package insert completely erroneous categorization of their agonist dosage as subtherapeutic.
anuketscrusade (7 hours ago)
6)If you remove the patients who were included without any basis for inclusion, and include those without any basis for exclusion, you get 3 patients out of 66 taking agonists, which indicates a prevalence of 4.5%, or approximately ¼ that which you are claiming to have found

[jinglelady4]

Originally Posted by Bob Dawson

Mayo Clinic deleted Anuket’s comments

Video from Mayo Clinic saying that one in five Parkies is a destructive gambler or hypersexual, and that one in five is underestimated because many Parkies do not reveal that they have turned into sex maniacs. Although they also proclaim that they did not meet with, talk to, or listen to anybody who has Parkinson’s. The usual. So Anuket, who has had PD for many years, wrote 6 comments in their comments section – short paragraphs, each one revealing some aspect of the questionable conclusions of the research. And within hours the world-famous Mayo Clinic deleted all her comments. The conversation is going on right now:

bobulli (8 seconds ago)
You know, you say in the video that you did not even meet or talk to or listen to any Parkinson's patients in doing your research about Parkinson's disease, and Anuket, who has Parkinson's, writes in to contradict your research, and you delete all her posts. We are so, so very accustomed to being treated like that. Let's see now, one in 5 - that's 300,000 hypersexial gamblers. Where are they? I have met 300 Parkies. And did not get laid. Find me the 20%
bobulli (7 minutes ago)
And I will be supporting Anuket at my site, parkinsons dance at blogspot. There are about 300 of us here and we all have Parkinson's, and we are very very tired of being told we are the ones who have to whisper.
anuketscrusade (13 minutes ago)
anyone who reads this before they delete it, i raised several questions about this study and posted them here a day or two ago. rather than addressing them, they have deleted them. i will be posting the same questions and several additional issues on my blog anukets crusade.
bobulli (2 weeks ago)
Of 1,500,000 Americans with Parkinson's, how many gambling, sex-crazed Parkies did you find? You say one in five people... and you say you found SEVEN PEOPLE who, knowing they have a fatal disease, go nuts on gambling and drugs and sex. Now it is harder for us to get jobs, apartments, bank loans, because the press have run wild with this exciting story, that drugs-crazed Parkie gamblers are not to be trusted.
HappyandBetFree (1 month ago)
1 in 5 an UNDERESTEMENT?


Mayo Clinic video on You Tube:
One-in-5 Parkies is a destructive addict or hypersexual in ways too embarrassing for the scientist to talk about on TV. Although he did not hear that it was embarrassing for anyone with Parkinson’s because he did not talk to anyone with Parkinson’s. We are getting so tired of this.
http://www.youtube.com/watch?v=3oNkY...eature=channel

Even if that were true - the statistics are way off because it didn't break out the numbers to exclude the large majority of people with pd - being elderly - and focusing this as (much smaller numbers) effecting Young/early onset people taking large doses of agonist medication.

[Bob Dawson]

And I know that Mirapex has done some strange things to some people. But we are not, or at least not yet, over-running the streets of Vegas. It's not a bad idea, though. 1.5million Americans have PD, so the "low estimate" is that 300,000 sex-crazed Parkies could be in Vegas all on the same week-end. How about next Thanksgiving. Do you think we could arrange that? Do you think that the Mayo can find 20% of us doing things the scientists can't even mention, except to say how the Parkies humiliated their families with their rotten, drug-induced behavior? There ain't no 20%.

[Bob Dawson]

Anuket put up a new post on her own site, for those looking for it from YouTube:
The Mayo Clinic's worst nightmare: Parkinson's patients who do not remember to shut up:
http://anukets-crusade.blogspot.com/...nic-study.html

That's all I have to say.

[bluedahlia]

I agree with the Mayo study. The problem is under-reported. Mirapex is a real big problem, not only in parkieland.

[rosie]

Originally Posted by bluedahlia

I agree with the Mayo study. The problem is under-reported. Mirapex is a real big problem, not only in parkieland.

assuming you have read the study, i am just curious as to your thoughts on anuket's observations and questions with regard to what it says in the study.

thanks,
rosie

[Bob Dawson]

Bluedahlia, I hear you. I know that some people have suffered greatly because of Mirapex. As this doctor said in the video, the sensible thing to do is to reduce the dosage, or try something else completely, when you go crazy because of the brain altering chemicals you’ve been pouring into your brain. Side effects, tell me about it. The latest version of levodopa is advertised as reducing vomiting by 50 percent. So at least we’ve got that going for us.

There are billions of dollars in lawsuits against the 2 companies that make that Mirapex stuff.

But even that is depressing.. The lawyers go from disease to disease. They are hot on Parkinson’s right now, and I get phone calls to testify. The lawyers keep from 50 percent to 80 percent of the money if they win the case. The rest, they divide up among the Parkinson’s spokesmen, or victims, as they want to be called. If the case goes badly, the lawyers don’t charge you any legal fees. So you can’t lose. One guy picked up $8,000,000 because he was taking mirapex and went gambling. And so the stampede is on. I have been contacted by 4 law firms. With my website and all, don’t you think I should get a bonus to testify on their behalf? That last guy was a nobody. He got 8M. With me, they started out wanting to split the cash 50-50, but I would be a star witness and very quotable. Don’t you think I should hold out for least $20,000,000?

So with billions of dollars at stake, proof about Mirapex, for or against, is worth Big Bucks. And so we get the usual charade. No need to actually involve Parkies. This is “evidence-based medicine”. Your actual life is no evidence.

All of a sudden, the % of Parkies becoming hypersexual or gambling has gone from zero to 3% to 8%, to 10% to 13% and now it is 20%, which they say is an underestimate. That’s 300,000 Parkies. Where are they? In your local PD group, how many fly to Vegas? AH, but your testimony is not valid. You have the disease

And when Anuket disagreed about the science of it, their first instinct was to delete. She has PD. They do not. They tell her to whisper.
It’s no way to run a railroad.
They are not talking about the disease that we have; they have invented one for us. And so our real disease gets neglected.

[paula_w]

i know people who developed gambling and hypersexuality [i am no fun , did neither], but have heard the study was poorly done.

so is there a link to the study and results? i heard very few people were used. i think there is common ground between people who know it was the agonist [we know how we feel when doctors don't believe us] and those who don't feel it's been proven by research.

if the clinic was confident and had the information to respond with, they shouldn't have deleted the comments. but i do want to caution that doctors just don't like to be challenged and anuket might have been deserving of a spanking - so they took her comments off. It isn't going the way they want it to.

as if they'll stop her..lol
paula

[Bob Dawson]

My own opinion is that all of the brain drugs can do almost anything to anybody, and each of us has to try to deflect the bad side effects. My opinion is that the disease itself, plus the input of brain-altering chemicals, can swing anyone from agony to ecstasy and back again, and we all have to pay attention to what is happening to us. And when I started, I had no idea that Pharma companies actually do lie, cheat and steal, because of the billions of dollars involved and because of the mediocrity of some of the researchers who make a career of cranking out conclusions that are not at all based on the evidence their study yielded. It is deeply depressing to read the Lancet or the Journal of American Medical Assoc., and find out that 55% of the research papers are simply never handed over for evaluation by others, and so you wonder what they are hiding; and of the ones who do hand over the info, 31% of the medical researchers changed or falsified or completely substituted the primary conclusion of their research. 31% of them lied; switching the primary conclusion with one of the secondary ones; or just changing the statistics to get a result that looks good enough to apply for another grant.
The trust is gone; if it ever was there, and although I believe that Mirapex can take you anywhere from floating in the clouds to committing suicide - so you really got to watch it and we have to watch out for each other - but to announce that 20% of Parkies are destructive gamblers and dangerous hypersexed druggies; and to say that is a low estimate... People lose their jobs because about this inability to control their most primal actions. Which is B.S.
No doubt there are some such; no doubt that some Parkies somewhere, hypersexualized; myself I know of 2 Parkies who seem bi-polar, maybe all Parkies are lunatics in some way, but to throw out to the world that 20% of us are a danger to ourselves and to society, uncontrolled robbery to pay for uncontrolled sinfulness - well, if it is the truth, then it is the truth, and the consequences must follow. But it is not the truth. It is closer to being a bad joke than to being the truth.
It might be interesting for scientists to look for a cure for Parkinson's. The study about the impact of pickled herring on Parkinson's some years ago convinced me that someone has to tell the scientists that their schtick is not funny anymore.