[jeanb]

petition against sham surgery

[jeanb]

Quite a few people have visited (30+) the website with fewer than that responding. I added more info - plus my name as the website owner. I hope more people will choose to participate.

petition against sham surgery

Sign this petition against the use of SHAM SURGERY on Parkinson's patients in brain surgery clinical trials. Write your comments on the subject.

If you give your permission, your name & quote may be used as part of a "poster submission" for the upcoming World Parkinson Congress in Glasgow, Scotland, September 28 - October 1, 2010. There is no guarantee the poster application will be accepted, but I will try!

Your contact information will not be shared with anyone without your approval. Jean

[lindylanka]

Dear Jean,
It would be more engaging perhaps if people could see the comments. Is this possible? At present it is simply a page offering the choice to sign. Not everyone will be aware of the issues, or really what sham surgery is in PD, and why it should be stopped.

Best wishes
Lindy

[Bob Dawson]

I signed, adding the comment that it is time to boycott all Parkinson's clinical trials if they are going to do sham surgery. The number of volunteers has dropped since the 48 volunteers for the Amgen GDNF trials were treated like cattle; and it was impossible to get information, just as today, sinemet CR is being pulled out of major markets by the deliberate shutting down of production lines; and again, it has so far been impossible to get information, such as: by what criteria are entire countries being cut off; by what criteria are thousands of individuals being cut off the drug while others get their supply?
It's like that all the time, year after year: the Parkinson's industry is fat, self-satisfied and complacent; sales of L-Dopa and the agonists are increasing, passing $3 billion per year. Everything is going just fine for the owners of Parkinson's franchises.
But I agree with Paula: Enough.
Nothing will change as long as they believe we cannot hit them back.
(1) Boycott the labs using Parkies as fodder; boycott clinical trials playing with our lives with sham surgery: most countries have already banished this barbaric and unethical practise;
(2) We need help; we have no resources; the PD industry does not answer our questions, and they scorn or push aside those who are just seeking answers: issues such as the disappearance of sinemet in some markets. The state should press charges against the perps. The disappearance of one of the most-prescribed drugs for PD is either gross incompetence; in court it would be called criminal negligence; or it is what it looks like - a deliberate attack on us; a co-ordinated false shortage for some objective we are not told about; but it would appear to be about multi-national drug dealers demonstrating their power over mere national governments. Canada's supply was re-instated at the same time as the remainder of Australia's supply was cut off completely. Or maybe their mule got busted at the airport.
Enough. Is there any way to get this petition out to all sorts of Parkie websites and orgs and especially neurologists, with copies to the "corporate bio-ethicists" who proclaim that there is no problem with Big Pharma's ethics. They need to know that a reaction is building. They need to listen to that rumbling in the distance... it just might be a herd of elephants coming back to re-claim their ivory.
Boycott where needed.
Pressure the legal system to press criminal charges where possible. Their lawyers and political donations will keep them in the streets, but at least they will have that little doubt in their minds.... what if there is a mean old judge whose father died of PDF?

[jeanb]

Lindy, I can do that. thanks! jean

Originally Posted by lindylanka

Dear Jean,
It would be more engaging perhaps if people could see the comments. Is this possible? At present it is simply a page offering the choice to sign. Not everyone will be aware of the issues, or really what sham surgery is in PD, and why it should be stopped.

Best wishes
Lindy

[girija]

Jean,
You may have posted about a poster presentation at WPC earlier, if so sorry I missed it. Please explain what is "poster submission" and how would our general comments on sharm surgery would be a part of a poster?

Thanks
Girija

If you give your permission, your name & quote may be used as part of a "poster submission" for the upcoming World Parkinson Congress in Glasgow, Scotland, September 28 - October 1, 2010. There is no guarantee the poster application will be accepted, but I will try!

[jeanb]

Girija,

PWP are invited to submit abstracts to the upcoming WPC. If I get more responses about sham surgery -- I thought I'd write an abstract an submit it for consideration. if accepted i would create a large poster about the topic - why patients believe this procedure is unethical, post text from European scientists who propose a different solution, post quotes from patients on the subject.

I know I just posted the signup page and thread, but so far the responses are underwhelming. Seventy people have taken a look, but many of the strongest voices in this forum are holding back. (only 3 responses as of now) I hope that will change.

I think this topic would fall under #4: 4-Influencing research through fundraising, clinical trials, grassroots campaigns

http://www.worldpdcongress.org/Abstracts/deadlines.cfm


Living with Parkinson's Abstracts

The WPC will also be accepting abstracts on the topic of living with Parkinson's disease. Living with Parkinson's abstracts should highlight and share details of programs and projects being designed and implemented that help people with PD and caregivers to take charge of their situation and bring about change on a local, regional, or national level. These can be projects done by individuals, groups, or organizations.

five categories for the Living with Parkinson's posters are:

1-Educational & Awareness Raising Programs

For example, posters might showcase activities to raise the profile of Parkinson's in your local community or to draw public attention to Young Onset Parkinson's Disease.

2-Government Advocacy/Campaigns/ Public Policy


For example, posters in this category might highlight campaigns to increase public funding for Parkinson's research or to reduce the cost of access to medication.

3- Living Healthier with PD

For example, posters might emphasize the benefits of exercise for people living with Parkinson's or the importance of diet.

4-Influencing research through fundraising, clinical trials, grassroots campaigns

For example, campaigns to achieve more involvement in research for the patient community or activities linked to specific potential medicaments.

5- Other

[jeanb]

I guess if folks don't like the signup page / website but think this is a worthy project, please PM me with your input. Or PM me and I'll give you my email address.

I'm willing take action and do something about a topic many of us feel is important. But if I don't get feedback in the next week or so, then I'll let the topic drop. Maybe others don't feel as strongly about the topic as I do. I think having a poster with our response AGAINST sham brain surgery in clinical trials displayed at the WPC would be an incredibly strong statement.

your responses or lack thereof will let me know.

[girija]

thanks Jean
Surprised to hear that the response is so low. Hope it changes


girija

QUOTE=jeanb;622056]I guess if folks don't like the signup page / website but think this is a worthy project, please PM me with your input. Or PM me and I'll give you my email address.

I'm willing take action and do something about a topic many of us feel is important. But if I don't get feedback in the next week or so, then I'll let the topic drop. Maybe others don't feel as strongly about the topic as I do. I think having a poster with our response AGAINST sham brain surgery in clinical trials displayed at the WPC would be an incredibly strong statement.

your responses or lack thereof will let me know.[/QUOTE]