is a shame.

So instead of the usual complaints, like "I did it for nothing." - because that complaint will quickly be pointed out in writing as that's the attorneys job - and we let them get away with talking about us as if we aren't here..lol.

Surely it's f air to say that a boycott of sham surgery trials may be required to make the point. Think very hard about that within . Sham surgery can blow your mental state way off....no regard for that; it's more likely they will walk away, renig on follow up, and complete ignoring our psyches. Come on! They drop the shams cold.

This isn't right and we have to refuse to accept it. Science only covers 30% at the most in what really happens to a person's head when they drill it for nothing.

ok tonight's question:

[B]How could researchers and scientists, knowing and discovering all the information pumping into the world every minute it seems - who have discovered active little pumps and crackling electrical connections and multiple messages - what a busy place a cell is.....talk about connections..these are the ones we should be focusing on."

..... then stick these gigantic needles into your brain......along with batteries, or pumps; wires; then intoduce a man made calibration - yikes; hit it and miss it [they do both regularly ]-

..... and not think that they are altering/ damaging the brain in millions of connecting ways? certainly introducing foreign substances.

Thoughts anyone? it's now or never - this goes before the FDA with public comments.
paula

If we fail to do something about it, unless we boycott or object publicly if we oppose it, we might as well NOT be here!

Paula,
Is this up for comments somewhere to the FDA? IF so can you provide link / info on where we should comment?

Agree that we need to make our voices heard AGAINST sham surgery. We need as many pwp as possible to speak out on this issue. As a pwp who has participated in clinical trials, they need to know I WILL NOT participate in a trial with sham surgery, and I WILL urge other pwp to take the same stand.

We each have personal stories. It's time to say it LOUD and clear that we are united against sham surgery.

Jean

Question:

I have been reliably informed by a neurosurgeon that patients who undergo 'sham surgery' have a different physical response to their surgery than those who undergo 'real brain surgery.' That there is MUCH more swelling and facial distortion for those who undergo real intrusive brain surgery. So doctors and nurses and even the patients and their families KNOW if they had the sham surgery or not.

We're no fools - patients in clinical trials figure this out this early on. It's time for scientists to stop this practice which is unethical, and it doesn't fool anyone!

Guess, they figured out how to get past the placebo effect. How awful and what a waste of time, energy, resources, and, worst of all, the human spirit.

I'm on board with this but can we get some research and stats from our European friends where sham surgery is banned!?!?

In the whole thread of email about it, there is no date for the actual forum. It is full of suggestions and articles. So it's late, I'll get the information posted tomorrow. The UK is having one before ours, I believe and we are awaiting the information from it.

This is one to be vocal about...
thanks
paula

Why would anyone volunteer for something with 100% chance of a hole in the head, and a 50% or thereabout chance of NO BENEFIT whatsoever?

Why does science think this is acceptable?

Why do they think already sick people should be subjected to this kind of lottery?

And this is given that the potential treatments themselves are also unproven.

If you did this to prisoners it would be considered barbaric.
We are already prisoners of an uninvited disease.

The logic behind the concept of sham surgery is flawed, ethically and scientifically. There are other ways of observing outcomes than this.

STOP SHAM SURGERY. SCIENTISTS CAN DO BETTER THAN THIS.

excerpt from scientists in the Netherlands:

"Finally, a recommendation is made for study designs that apply a disease-dedicated core assessment protocol (CAP) that can evaluate the period from pre-operative to post-convalescent stages quantitatively, and therefore, unbiased. The strength of these CAPs is that they allow comparisons of different grafting techniques, of results between centers and of other types of interventions and invasive treatments such as deep brain stimulation. On ethical grounds, it is unacceptable not to use a study design that circumvents sham or imitation surgery. It is a challenge for the neuroscience community to develop CAPs for brain diseases that are eligible for neurotransplantation in the future."

link to the article

This forum is stacked against us. We need to show some grit.

Workshop is june 30 -july 1. Europe is before that but I don't know the date.

Here are three articles available. If interested, I can email in .pdf if you are interested.

Three important articles:

1. Kim study on patient perspectives of sham surgery (2008)

2. Risks of sham surgery -- review article (2005)

3. Editorial (Neurology 2005)

Article written by group of pwp online at:

Ethical Issues in Clinical Neuroscience Research: A Patient's Perspective"
Written by Parkinson Pipeline Project members
Published in Neurotherapeutic, Vol. 4, No. 3, 2007.

Read the article

the 2007 PPP sham surgery survey questions, responses and comments are omline at:

http://pdpipeline.org/whatsnew/shamsur_survey.htm

The articles Paula mentions are very powerful. Read them, pass them around, hand out copies in PD orgs and your doctor's waiting room.
The odds of winning the argument are very low because all the power and money is against us.
So it is time to call for a boycott. They will most likely win with words but we can win with action - refusing to participate in any experiment using sham surgery, and denouncing every instance of it.