http://www.monroeinstitute.org/thehu...kers-desperate

The full article from which this was culled has interesting comments about placebos and PD.

http://www.wired.com/medtech/drugs/m...urrentPage=all

no screws missing and i must talk about faith because it is a good theory.

It's obvious that our bodies and brains have more advanced skills, some that would be viewed as supernatural. They may have come to us in supernatural ways, i believe, and they are available to everyone. it's always beenabout choice. to get the full benefit i guess you have to spend much time cultivating these skills of joining hands and praying, really praying hard, it can take you to a place OF BRIGHTNESS AND POWERFUL FORCE..

MAY THAT FORCE BE WITH YOU. it is barely showing a peek of the forces of healing that are out there. i think there is so much we could do if we allow that force to be unleashed under an identity that does not include the word religion. ask yourself where you are today, the last months and years, about who is in charge of your life.what does your behavior have to do with this guidance?

i have been involved with thought leaders who 12 yrs ago just came together and out of it came Grassroots Connection, pdpipeline and does anyone remember the Early onset pd testimonies? It was the first attempt to create a database of patient infor and i did it alone with over $2000 of my own money. it was too long, but i had over 2000 partial testmonies and about 400 complete ones.

ALAS ,i didn't know what i was doing and it wasn't even statisticlly significant written. ;live a nd learn but we were on this.

so this thinking isn't new. back in the early 2000s pwnkle was in the neuroimmunophilin trial and truly thought she got the drug. she described changes, but they didn't come from the experimental drug - she didn't get it.

"Believe it and you shall receive it." maybe we don't understand that process, but it is a promise made to us and looking more and more better than the chemical failures. so what are we being told and how many times do we ignore what could work because it's called religion. it's supernatural and we are wasting it,even tho it is repeatedly right in our faces
we've given it a name, divided it up in boxes and are helll bent on either forcing us all to think the same or destroying each other. what a waste as alll these little displays of the force are dancing right off the pages at us.

Here is another interesting article about the placebo effect in PD.

How 'sham' brain surgery could be killing off valuable therapies for Parkinson's disease.

http://www.nature.com/news/2011/1108...l/476142a.html

I am still puzzled about the high degree of placebo effect in PD. If the neurons are destroyed why the improvement? It's like a leg amputee getting up and running.

I met a fellow PWP at Dr. Dwight Jennings' office (he does the TMJ therapy using a mouth appliance.) She was in for an adjustment and had originally the same symptoms as me, postural instability, gait disturbance, fatigue, bladder problems, etc. Now she is normal and has been that way for over a year. Is this a placebo response?

Since she flies up from southern California to the SF area for her appointment she tried getting a local dentist to treat her. The mouthpiece she got from that dentist made her much worse. Nocebo?

Could it be simply that Placebos trigger endorphins and thus increase immune response, same as LDN or dextromethorpan?

Look at the table http://www.nature.com/news/2011/1108...42a/box/1.html

Something very fishy is going on here. I think there can also be 2 other reasons for this:

1. PD is different for everyone. Some have fast progression, others a slow one. If you don't take this into account, your results can get messed up and you come to strange conclusions.

2. Conspiracy: Maybe competitors pay doctors or patients to mislead the results.

In my opinion a number of things are going on, some of which are placebo effects and some aren't.

I think it likely that there are many different types of Parkinson's, each with its own underlying cause. For instance, peduncle compression, TMJ issues, ongoing bacterial or pollution assault, autoimmune response. They are called Ideopathic Parkinson's because they share enough of the classic symptoms of Parkinson's to be labelled as such, while at the same time the cause is not clear enough for the Ideopathic tag to be lost. A circular argument. It follows, therefore, that in a clinical trial people will react differently depending on what type of Parkinson's they have. The outcome of a trial depends at least in part on who is in the trial, and what type of PD they have.

Even though PD is a broad church, many people are misdiagnosed with IPD.

Some of the outcomes are "measured" subjectively. When we read of an x% improvement for a person what does that mean? Especial care needs to be taken when people are in effect marking their own work.

Care needs to be taken to ensure that test scores are not improving during the course of a clinical trial due to a training effect.

Once the above issues are eliminated we get to true placebo. This should be encouraged, nurtured, exploited.

The morals of the story IMHO are:

We need personalized clinical trials; trialing the person against the potential therapy, rather than trialing the potential therapy against people. If a therapy works for me, that's good enough for me, even if it doesn't work for you.

We need to rigorously use objective testing.

We need to take as much benefit from the placebo effect as possible.

Finally, as I've suggested before, this forum has a placebo effect: it describes potential therapies that so often lead to short term improvements that slowly evaporate away. By which time another potential therapy has been proposed, so the feeling of let down is minimized.

The question is can we do better, can we "grow" placebo?

John

You made some very good points. Also ... what about the meds they take ? I mean, I can go worse but if I take more meds you will not see this. I know before you enter a trial you should agree to some rules, but I know from experience that people don't follow the rules. And let's be honest, nobody can check this.

As you say, looking at improvements of the group is useless and a serious waste of money. There should be biomarkers and they should be analysed individually for each patient. I am sure that many products that have been tested in clinical trials have wrongly been labeled as "not working".