i have just read a few more articles about sham surgery, with scientists of course concluding it is ethical and has potential benefits. i've had it with "scientists" telling us what is ethical..through statistics.

Ethics come from doing the right thing. They are developed by humans who understand far better than the guys in the lab jackets.

Sham surgery traumatizes people. Gene therapy is dangerous.

What do you think about a boycott of gene therapy trials or at least the ones where they do sham surgery?

They aren't going to find a cure through gene therapy anytime soon.

Boycott shams - also known as the BS boycott
paula

Paula,
I will be happy when they start really thinking out ways to deliver gene therapy by humane means - then there will not be any need for sham surgery. It makes me mad every time I see a headline about gene therapy, promising hope for one group of suffering people, or another. There has got to be better thinking on this type of surgical procedure, and I agree that the ethics should not be decided by the people who have vested interest or their lobbyists. There is no such thing as 'pure' science. They will find an answer and perhaps a cure by looking at people better. They should be looking at the epidemiology.....

I went looking for statistics on PD world wide, and was shocked to find that there are almost none, statistics deteriorate into generalizations - no-one seems to be looking at some of the most important questions, they are too busy doing other things that have very little to do with us..... and making huge amounts out of not finding solutions to the things that affect ordinary people.

There are an 'estimated' 4 million people world wide with PD. If this figure is anywhere near accurate the majority will never have access to treatment, never be seen by a neuro, let alone get help with living with it. So where does that leave the relationship between surgery and a 'cure'............ or do the many simply not figure anywhere in the ethics at all.......

At both ends of these statistics there seems to be flawed thinking, and a very narrow focus of vision........

Sham surgery is shameful and lacking in compassion, even when participants are willing.

I'm with you both on this. People who have nothing left to lose can be persuaded to take chances that are simply not justified. It is inhumane if not criminal to take advantage of their desperation. I say "their" because I am not quite there yet but in the end standing up to this is motivated by self-interest because sooner or later it will be "our" desperation.

Sham surgeries are then blamed for bringing down the trials. So we are deceived, then something unknown - namely the placebo power - comes from within - but is not always initiated by the patient participant. Little things and comments from the uninformed technicians and others they run into in the hospital can start up the placebo effect with a comment unintentionally. They are ignorant of why the person is in the hospital.

It's time they stop drilling holes in our heads. I thought we were civilized but the more I think about it , the more it becomes a scientists' playground and mental illness, like post traumatic stress syndrome, is the result. People hate when their doctors don't care.

We have to stop agreeing to be "picked' for these dangerous trials and insist on being included in the research agenda.


paula

paula,
one day these approaches to 'curing' and finding cures will be regarded with the same horror we now have for lobotomy. the enlightened scientists will have moved on and the world will have changed. we are right to challenge the assumptions, and we know that in any case we may well not be the beneficiaries....... this is for that future......
lindy

Paula,

You bring up a very important subject that highlights what continues to be wrong with our research model. I wonder how it is we can tout having the best scientists, doctors, hospitals...health care, blah, blah, when our model for researching disease therapies and cures lags a century behind.

I recall talking to Linda H about clinical trials and research in other countries. Apparently, if I recall our conversation correctly, other countries in Europe and around the globe ban sham surgeries because they are unethical; they have an alternate model for statistical analysis. Here's the rub: the FDA and powers that be here refuse to accept their alternative stats because...they are NOTbased on sham surgeries and thus statistically suspect?!?!!! This is why treatments like Duodopa have been used in continental Europe for 4-5 years and is not available here. Linda, if I'm wrong on this, please set us straight.

No matter what oceans, cultures, languages, separate us, don't we all share a common bond through our compromised neurotransmitters? Why shouldn't a drug that passes muster in Japan be approved here more readily? I understand the need for standards, but why don't we have an international standard for research- our disorder, disease, syndrome doesn't have a national boundary. The irony is, after all this focus on standards, ethics, and statistics, we are in the end our own witch doctors and shamans. While the important people who have the power to change our world hum, lurch, and chug along with the status quo, we're forced to cut capsules, mix powders and solutions, grow beans; basically, cure or treat ourselves because to sit idly by while nothing happens is like giving up.

My 2 cents.

Laura

I see lots of smoke everywhere, but no fire, and it has caused me to become very cynical

We have a disease that makes us worth more to the pharma co's sick than cured

And with all the millions of dollars that the APDA, PAN, PDF, etc..raise in the name of research, the only beneficiaries that I see for their efforts thus far, are the lobbiests, the employees of these organizations, and the people who are drilling holes in our heads needlessly..I was a PAN advocate for R.I. for 2 years, and when I found out about the irresponsibly hazardous working conditions at the NETRP labs, I resigned..That, and the fact that I when I couldnt make it to the PAN forum to make my lobby appointments, because I couldnt walk due to a nasty bout with pantar fasciitis, they wanted me to fly out there anyway on a Monday to keep those appointments..They didnt seem to get it, that I was in too much pain to walk..I also was a board member of my local APDA..I just up and quit..I didnt even bother turning in a resignation..Then I get these newsletters in my e-mail from various pd organizations, with pages full of articles and to what avail?..Like MJF said at the WPC.."What we dont need is another dopamine agonist"..But what has come down the pike lately?..Azilect..and I cant afford it............

For me anyway, nothing has changed..Accept it, see my Neuro, eat my Sinemet, and make the best out of it

Paula and Linda,

Genetic research is true science. The problem is, rather than going the long route to unravel the yarn that leads to the cure, the researchers hear of one true genetic discovery and jump the gun to proove thereoms at the expence of the patient instead of follwing the lead all the way to the end so as not to miss any other information that may prove their thereoms wrong.

Genetic research is in its infancy. Many researches are trying to sort out how the millions of deletions, additions, or other mutations effect the chemistry of the body. For example, did you know that deletion of exon 3 from the Parkin gene leads to a stronger possibility of breast, ovarion or liver cancer? The Parkin gene effectively slows the growth of tumors and dopamine is used in chemotherapy for those with malignant tumor growth. Both liver and ovarion cancer are very difficult to catch with the current screenings, and both are incurable in the late stages. Try searching for Parkin gene and ovarian Breast Cancer. See how many hits you get.

Science only gets swept away when patients keep screaming for cures, and the Pharmaceutical Companies try to be the first to come up with a potential cure based on long shot thereoms. Money is wasted, patients get hurt, and the pharmaceutical industry does not change its research methods it increase the success rate by practicing true science, following the chains to the last link. Need I mention sharing research is not practised?

If genetic research would be assigned out in a methodical way so every research venue would get a piece of the genome pie, and worked only on that, then shared the information wilh the whole industry, think of what could be accomplished with minimum expenditure.

I am involved in such a small piece of research. The purpose of the study is to, "Make induced pluripotent stem (iPS)cells from Parkinson's Disease Patients" with proven genetic mutations, then introduce different environmental factors to discover which will create Parkinsonian symptoms. I have already given my skin sample, the doctor who took the skin sample did it for free and took care of sending it to the researcher involved. I expect nothing in return, in fact saved the reseacher money by having my personal dermatologist do the work here in Minnesota (he was offered pay but did it for free) rather than get a free trip to Buffalo, New York with motel, all expences paid.

I received a hand written note from the doctor teling me the sample arrived fine and in a few months they should have the pluripotent stem cells to work with. He promised to keep me updated on the results of the research and signed the note with his first name only.

There is legitamite research out there for genetic research.

Vicky

hi vicky,
your post is very interesting and i agree with many of your points. the people in the trial you are in sound like they are accommodating of the patient capabilities to participate; what is the trial and where can we find it?

i also agree that genetics is new and understand a long way off Advanced patients don't call for a cure for themselves very often; that was promoted through the pd community by the medical scientific community 's "cure in five years" statement - 11 years ago.

I don't think patients should be blamed for bad research or that we are throwing out the baby with the bath water. Informed patients are very few in number. Most pwp are uninformed and listening to their doctors.

This is a corrupt business. Corrupt in both sense of the word - clinically corrupted and corrupted through conflicts of interest. [IMHO]

paula

Vicky,
I absolutely agree about this research being in it's infancy, which is why their should be good trial models - maybe the old ways of trial design need to be wholly rethought, and then of course research should be shared, I cannot for the life of me see why genes should be patented and belong to corporate entities, which will mean exclusion for reals beings somewhere along the line, mostly by way of economics. All this knowledge belongs to the entire world, it is unethical and bad for humanity to corner the market on knowledge and filter it through in the most highly profitable way possible - especially when the market in question consists of sick people.

Personally I cannot see a cure coming for me, and I do not think that these companies are remotely interested in what patients views are, so long as we keep consuming their products. Research is a different matter altogether - in the case of researchers there is no choice for them, their ethics are compromised before they are even engaged in the research, because of the way our world is ordered. I would settle for treatments that improve quality of life anytime, while the industry slowed down and did the research carefully, ethically and with the interests of patients central to their aims. However the likelihood of that happening is almost as remote as a cure arriving in time....

Vicky I cannot disagree with anything you say other than that the voices of the suffering is what sweeps science away. There is plenty to show that science itself is often compromised to all the things I have mentioned above,
with the picture being skewed to corporate vision. I am unable to see through that lens. It is simply too distorted.

Lindy