[reverett123]

This thread is for the discussion of possible ways that we might reshape the world of PD research and present a more accurate view of PD and the problems associated with it. In short, this is a place to discuss intellectual rebellion against the established order for the simple reason that it has failed in too many areas to be ignored any longer.

Laura, you mentioned the wiki that a couple of Brits are trying to get off the ground. I have worked with John and Harry a little but they seem to have run out of steam and might welcome the help. But I have some misgivings about a shared vision.

Have you talked with them at all?

If there is nothing there for us, what other options exist under the Wikipedia umbrella? We could benefit from the recognition factor but I don't want us to work our butts off only to get caught up in a range war with the vested interests.

-Rick

[Conductor71]

Originally Posted by reverett123

Laura, you mentioned the wiki that a couple of Brits are trying to get off the ground. I have worked with John and Harry a little but they seem to have run out of steam and might welcome the help. But I have some misgivings about a shared vision.

Have you talked with them at all?

If there is nothing there for us, what other options exist under the Wikipedia umbrella? We could benefit from the recognition factor but I don't want us to work our butts off only to get caught up in a range war with the vested interests.

-Rick

Rick,

I have not spoken with them but the format came to mind based on their endeavor and invite to participate. I have been wanting to help get it going but am a bit intimidated because I need an architecture or structure; they seem to have one, but I don't know what that is.

I agree with you about toes being scrunched although they put forth that it is open for contribution. I am just weary of everything being so fractious. I don't think what we want to add knowledge wise is off base but the rats, patient hypotheses, data mining, we should clear. I can easily do my snopes thing elsewhere. Even if we can get a paragraph intro in the main section and a link to a separate (but equal) wiki that would be swell. Not sure what kind of wiki page would work for our needs but will take a look see and report back.

L.

[LacieCee]

Rick, are you talking about issues with design of the data recording, or the recording itself? I can't help with design of the study, as I'm not only not a scientist, but I've found that a shocking number of peer reviewed studies are extremely poorly designed. At least the bar is low!

For the recording of data, there's a website that's expressly dedicated to this. I'm new here so I'm not going to risk posting the name. Are you able to PM me?

I also have a supplement for you to add to your rattie list.

[johnt]

Whatever we decide as a group to do, if we're serious about PwP research we'll need a way to submit and store data, a way to test ourselves objectively and a way to extract, aggregate and analyse data. I've written an integrated set of programs to do this. They can be run online at:

http://www.parkinsonsmeasurement.org/PDMeasure

Instructions on what to do are given there. You will need 10 minutes to register, complete two surveys and do a finger tap test. Please PM me with your feedback.

The sooner we validate the tools and baseline ourselves the better.

LacieCee, are you refering to PatientsLikeMe? They would be great to use if you could access everyone's data. I don't think you can. Please advise.

John

[reverett123]

yes, PLM had a lot of promise but it has degenerated into a social club dominated by a half dozen "personalities" who are almost dangerously ignorant.

[LacieCee]

John, yes, that's the one I was talking about. You might be able to set up something similar if you like the design. I see it's set up on Wordpress.

Originally Posted by reverett123

yes, PLM had a lot of promise but it has degenerated into a social club dominated by a half dozen "personalities" who are almost dangerously ignorant.

Ahh, the good old internet.

[soccertese]

http://dash.harvard.edu/bitstream/ha...pdf?sequence=1

The first such trial took place on PatientsLikeMe and was entirely coordinated by
network members with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease.
The study was inspired by a publication in peer-reviewed medical journal, reporting that the
mood-stabilizing drug lithium carbonate may delay the progression of the disease.57 Lithium
carbonate is only FDA-approved for the treatment of mood disorders in the United States, but
determined patients were able to get it prescribed by their doctors off-label.58 The trial was
coordinated by a retired engineering professor from the United States, and a Brazilian computer
systems analyst, both ALS patients and members of the online community.59 The two recruited
over 200 ALS patients worldwide to take a specified dose of lithium and answer standardized
questions meant to gauge participants’ symptoms and disease progression.60 PatientsLikeMe
provided the tools necessary for data aggregation and analysis.

[Conductor71]

To piggyback on Soccertese's ALS info, MS patients have also designed and funded their own clinical trial. Even more, they a patient led research group founded by a guy with MS who was fed up with the lack of progress in traditional research. This is ultimately what we need.

I have thought about Andy Grove and Sergey Brin, why don't they start something like this? We could have a dream team of the best. I don't get why they just work within the system when they do not need to.

Laura

[pegleg]

Parkinson's Movement is a group who have thought about this reclaiming of patient-centric research. They have some really intelligent and experienced people leading the global effort. (Jon Stamford,,PhD researcher, who also has a a diagnosis of Parkinson's, and Tom Isaacs of Cure Parkinson?'s Trust. They are financially backed by several groups but all support is from patient-vested orgs (for example, the Cure Parkinson's Trust.). www.cureparkinsons.org.uk

Pay them a visit and read about some of their projects. Joining up with their effort might be a way to go.
www.parkinsonsmovement.com

BTW, they are based in the UK and are a lead-in group for the World Parkinson Congress (WPC). This will be held in Montreal in October of this year. Make plans now to attend. I believe Jean Burns is a part of planning this event.
Jean? Are you out there? Can you give us some info?
Peggy

[Bob Dawson]

[QUOTE=pegleg;...
BTW, they are based in the UK and are a lead-in group for the World Parkinson Congress (WPC). This will be held in Montreal in October of this year. Make plans now to attend. I believe Jean Burns is a part of planning this event...Peggy[/QUOTE]

I don't have spare bedrooms but if anybody is coming in a camping trailer I have 75 acres to park it on. 40 miles south of Montreal, 8 miles north of the State of New York.