Why are there so many promising treatment... - Cure Parkinson's

Cure Parkinson's

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Why are there so many promising treatments which never work out?

condor39 profile image
14 Replies

In requesting finds for research, there is a lot of competition. If successful the research will be funded for one or two years.

If after this time, there are no positive results, the funding will cease.

Therefore, there is a lot of pressure to produce some positive results, however flimsy the evidence, and if there is some publicity “Rhubarb found to help Parkinsons”, it is more likely the grant will be renewed.

Unfortunately this gives hope to many people, until the research finally fizzles.

This applies very much to conditions such as Parkinson’s where, at any given stage, 30% improve, 30% stay the same and 30% get worse. The ones improving swear that whatever their last treatment, it caused an improvement. Unfortunately a fervent belied is not proof, and it needs a huge, expensive study to prove real improvement.

I hope this explains why there are so many claims, ad so little real improvement.

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condor39 profile image
condor39
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14 Replies
park_bear profile image
park_bear

The reason why there are so many failures is because in general, the chances of any proposed drug making it from preclinical testing through phases 1, 2 and three of human testing followed by FDA approval are small.

It is true that some researchers, seeking to make names for themselves, will publicize preliminary results. It is also true those sorts of results seem to find a ready audience here and elsewhere on the net.

Tribselyov profile image
Tribselyov

Condor,

Well stated...

“Placebo effect” generates 35% improvement is confounding.

jimcaster profile image
jimcaster

This may be stupid, but maybe placebo effect should be viewed differently with regard to brain diseases. What if I am actually better simply because of my belief that I am better? My attitude and stress level probably can't improve my broken leg, but I believe it truly can improve my Parkinson's disease symptoms. I believe we might objectively improve simply by subjectively believing we are improving. Is that crazy?

park_bear profile image
park_bear in reply to jimcaster

Not all crazy - makes perfect sense. It is been suggested that in Parkinson's positive expectations arising from the placebo effect actually cause release of dopamine. If so it is actually therapeutic.

In any case all prescription meds do is provide symptomatic relief, so if you can get the same from the placebo effect there is every reason to enjoy it.

Gioc profile image
Gioc in reply to park_bear

There is also the "nocebo" effect which is the opposite of placebo. And how could it not exist, if there is one, there is also the other, but no one ever mentions it.

en.m.wikipedia.org/wiki/Nocebo

park_bear profile image
park_bear in reply to Gioc

Indeed that is true. Which is why it is important not to make exaggerated negative statements about our condition. I am not going to give examples but when I come down hard against something it is for that reason.

Gioc profile image
Gioc in reply to park_bear

IMHO the placebo or nocebo effect can be easily explained if you consider it a form of hypnosis, i.e. a form of persuasive and deep agreement with the hypnotist or similar.

Both hypnosis and placebo effect have more or less the same success rate on the general population, just over 25%.

The same healing rate as a shaman sorcerer.

The placebo effect is not long-lasting because, as with hypnosis, sooner or later the person comes out of it.

For this and other reasons I do not consider the gains I have with the b1 after almost 4 year a placebo effect.

This is my opinion, (I must always write it since I quoted Alfred Korzybski,whose things I appreciate, but I'm not a fan ).

en.wikipedia.org/wiki/Alfre...

condor39 profile image
condor39

Your persona; experience is not enough to be proof of anything. You cannot extrapolate from such lilies experience.

“Keeping the Dopamine” is not provable.

Stress is a factor, maybe for some, but the idea of removing it is wishful thinking. I enjoy my stress.

Gioc profile image
Gioc

Frankly, I've been tilting on your last posts above: "Well If you like your stress everything is perfect" and maybe even a little stressed. Maybe you need to give us an exact definition of stress so that I understand what you mean technically, so we could also measure it and see what is stress and what is not. Then if you have a success stories, personally told, I could consider your solution, at the moment I'm continuing with the b1 even if it's a "placebo effect" that has lasted for me for 4 years.

Definition of stress. The Oxford English Dictionary 2. A state of mental or emotional strain or tension resulting from adverse or demanding circumstances.

IMHO as you can easily guess the stress to much to do with living and difficult to avoid it without avoiding even life. (work, family, children, friends, economy, etc., but also beautiful things like love and goodwill of others).

And with this answer you owe me a favor, so be kind not to stress me, I have PD. I enjoy my life.

Gioc profile image
Gioc

Ah ah ,Thanks I already have my diagnosis based on the datscan.

What is the definition of stress you are referring to when you reply to Condor in that way, if I can ask?

Gioc profile image
Gioc

personally I am a little confused about your definition of stress, but others may have understood. Given the successes of your customers why you don't invite any of them here on HU to write their story directly, just to avoid being self-referenced. Someone could ask further questions, and test the results, but among PD patients there is respect.

condor39 profile image
condor39

Sorry,, but you have lost me

Gioc profile image
Gioc

Sorry, but you also seem a little confused about what the definition of stress is. Certainly does not do dichotomy with calm, or is not its opposite. I give you a little help: Definition of stress from the Oxford Dictionary - 2.A state of mental or emotional strain or tension resulting from adverse or demanding circumstances ". Https: //en.oxforddictionaries.com/definition/stress. IMO The adverse circumstances mentioned here are related to living and not being avoided without avoiding living (Living = Work, children, family, economy, etc.). In fact, the calmest people I know I find in the orbit bringing the flowers. I see someone totally calm there.Perhaps for this Condor loves his stress like me: because we know that it is related to living and being "totally calm" is not my ambition. See that you owe me a favor: please don't overwhelm the PD sufferers with excessive announcements if you can, they already have many difficulties.

Gioc profile image
Gioc

the results make the difference between opinions and facts.

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