A MIRACLE or maybe not: There will always... - Cure Parkinson's

Cure Parkinson's

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A MIRACLE or maybe not

GymBag profile image

There will always be people who have an incurable decease that will do and pay anything to have hope. Hope is a wonderful thing and with out it lies depression in wait to further destroy us. Every one should have hope, indeed must have hope.

There is nothing wrong with spending a few dollars in search of hope but there are also people in this world who have no scruples who will gladly take the the sufferers money. All his money. Usually the victim is too embarrassed and without the resources to recoup any of it.

There is also a group of people who are victims who will swear that the cure worked for them and will say so very loudly and often . Once the placebo effect of hope wears off they become very quiet.

There are others , potential victims , who say nothing negative, and will not hear anything negative about the cure . Their search for hope is too strong , too desperate to pass this up. People are spending many thousand of dollars, in pursuet of a miracle cure.

It is time for those that have been tricked, swindled or just wasted a bit of money and a lot of time to come forward and be counted. Stop the next guy from falling into the same trap. I doubt that they will. It just goes on and on.

18 Replies

So are you alluding to a specific case or example here?

i think he is

😉

GymBag profile image
GymBag in reply to WinnieThePoo

It was a specific case that prompted me to write but there are many examples of this happening. We just get one group of mass hysteria cooled off and another unscientific claim of a miracle pops up and quickly gains favor to eventually loose its supporters because they are picking up on the next big thing. It does not draw us any closer to discovery of any thing helpful.

If I mention the specific example we will receive mail from the same people demanding their right to be wrong just like the anti -vaxers who have now generally gone quiet as they head for the hospitals to die.

Alright lets talk about one such situation.

healthunlocked.com/cure-par...

dnavibe.com/

Red light is probably the best example of people spending large sums of money on a silly UN-proven treatment that is being promoted by manufacturers of a useless device. Now every one is empowered to support and talk others into buying it . This is not difficult as the people desperately searching for a cure will trust anyone and buy anything to give them selves hope. If you challenge the new glorious discovery the same people voice their shocked dismay at the trampling of their latest contribution to the world wide PD race to find a cure. We dont even know a cause.

WinnieThePoo profile image
WinnieThePoo in reply to GymBag

Really?

Working through sequentially, your original post and reply,

Let's see how many rally to your cry and come forward. The only brave soul I recall so far is farooqj - who tried the vielight more than a year ago and found it did nothing for him (but he returned it and got his money back, I think). Maybe there are a few others.

You will, I am sure, not expect users to rally to your cry if that isn't their experience.

Unlike other fads, I am struck that mostly its users come from the sane and rational camp - although its a broad church

I don't think anybody has been promoting, or even discussing red light treatment as a cure ( a difficult term with PD ). My findings, and others I recall, feel it helps.

I don't think any individual is spending thousands of dollars on it - although collectively thousands of dollars are being earned by those supplying them. There are of course many variants - and both DIY bins, and the likes of Bolt Uprights $40 farrowing lamp are not expensive. The Coronet I used left me about E650 poorer after VAT. The Vielights (which KPO was looking at) are a bit more of a punch in the pocket book. I'm not sure it's necessarily a case of you get what you pay for, but the likes of the farrowing lamp are not the same as the devices "tested" on PD

"There is nothing wrong with spending a few dollars in search of hope but there are also people in this world who have no scruples who will gladly take the the sufferers money. All his money. Usually the victim is too embarrassed and without the resources to recoup any of it."

I'm not wealthy, but E650 is not all my money. I strongly suspect that applies to others owning red light devices. If you had a point originally, you may be in danger of losing it in deranged hyperbole. Let's skip that bit then

OK - you're reply. I promise you I'm not an anti-vaxxer. Indeed, I made that point in my reply to Levod on the thread you appear to be referencing

"silly" - no question. It is hard to beat sitting with a red light on your head for silliness. Fortunately I am able to do so in private

"unproven" - well. How do you justify that? What standard of proof are you looking to apply? There has undoubtedly been research, mostly rodent. I'm not sure I've seen "proof" that exercise or stress management are effective - and certainly not double blind placebo controlled evidence. There is a fair bit of "Proof" that photobiomodulation is for real.

There is research available that Infrared healing is effective . ncbi.nlm.nih.gov/labs/pmc/a... is one example

The thing that drew my attention, and caused me to give it a go, was a red light cold sore (herpes) treatment device widely sold in UK pharmacies, which I had found really effective over about 10 years. I see the FDA have approved a similar device walmart.com/ip/Virulite-FDA...

So, we're looking for proof specific to PD? Its mostly rats, post-hoc, or anecdotal, but it is fairly new as a concept, and lacks the bucks of big pharma to drive research. But all the little research there is, produces positive conclusions. How about this?

parkinsonsnewstoday.com/202...

and, apologies I don't have the time to find the research paper, and so I have to treat you to Suvi's report. Say Lavvy. surfershealth.com.au/news/2...

And then, there's always first hand personal experience. Now I grant you - if you've just shelled out 600 bucks on a toy, then cognitive dissonance could drive you to play with it just to justify the spend. But I have a garage full of unplayed with expensive toys. I stopped playing with this a couple of times and noticed the difference . (My wife tells me , she REALLY noticed the difference in my mood. This of course IS nonsense - I am always delightful, and never grumpy - but she gets these silly notions)

Moreover, I dropped to once a day for a few weeks - it is quite tricky, given just how silly it is, to always find the time. And now make a real effort to use it twice a day , cos it wasn't cutting the mustard just once a day

It may very well not work for you - since I believe you are another long-hauler, and the suggestion from Tasmania, and my casual observations on this forum, is that it helps new-bugs like me more. Of course, it may be you havent tried it. As I pointed out to that same wife, the Zeiss anti-fog spray we have for our spectacles when wearing a face mask is completely f**** useless if you leave it in the bottle - but completely effective if you bother to use it.

Such fun!

I agree that people here are very easily led.

But most of what I've seen written about the red light hats has been pretty measured. No one is saying it "stops progression" or that it's tantamount to a "cure'". At least not that I have seen or and not on any kind of consistent basis. The feedback seems to he "I think it helps" which is fair enough, really.

There are and have been a number of other things pretty heavily promoted here that would make good examples of your points, though.

Do you think PS128 is one of these examples?

It's not that simple.

First of all, we are fighting an undefeated opponent. Therefore we have to give it everything we got or else PD wins again.

Secondly, different things work for different people. ParkBear gets great results with ceylon cinnamon, RoyProp gets great results with B1, some people swear by Mannitol. John Pepper claims to be much better with just fast walking. Chartist touts melatonin as the solution to everything. The list goes on and on . I have tried many things and had some luck with some and nothing with others. Some even made me worse. When you experiment, your experiment is a success as long as you get a result, whether it's the result you want or the hypothesis is disproven. Placebo effects only last so long.

You won't have hope unless you try. You have to balance what you can afford with how bad do you want some relief. For example, the red light hats - too expensive for me so I will wait until I see how others do. There's tons of well researched supplements that are cheap and non toxic as well as free things, such as meditation and exercises.

If you want to lick this thing, try everything you can! Just not all at once! Who dares, wins.

Well said

Agreed.

With the placebo effect, surely one must hope or expect an improvement. My husband never expects anything to work. Mannitol was a good example. Many would have read my post at the time. It was amazing.

Maybe it’s not a good example as, unbeknown to most of us, mannitol is not just a diabetic sweetener, but has been used in hospitals since the 1970s for brain injuries and operations. It has never been researched till now, as there’s no money in it, as in, it can’t be patented.

The infrared coronet is a different example. It has been and still is being researched here in Australia by a “very reputable team of researchers” according to our very highly thought of neurologist. His comment, when we asked what he thought, was that some of his patients were using it (not on his recommendation) with good results. We now have one and have started using it.

Gwendoline

Hope the red lights work for you. The placebo effect is not something you can control with conscious expectations. You can be as cynical as you like and still get a placebo effect.I think the problem is worse in PD because of the way that the disease symptoms naturally fluctuate over short and medium term cycles. It's easy to attribute a change in symptoms with a change in therapy when it was going to happen anyway.

Hope it works for you.

I’ve written here quite a few times about the Redlights and my husbands use of it. I think after using it for a year plus, placebo effect or otherwise I definitely feel it helps. It is a chore to remember to use it but in the scheme of things I’ve seen the difference it has made. His meds haven’t changed for a couple of years, our Neuro says carry on doing what works for you so he does. Who knows with this condition what helps it’s up to the individual to experiment, I ll take placebo effect if it helps.

I’m with you GymB!! As I sit with my head glowing red in the early morning fog of a South Texas day. 😀

eschneid profile image
eschneid in reply to 134A

134 that made me 😀 as I'm about to do the same in a very frigid New Jersey this morning. What a bunch of suckers we are!!

Hello GymBag. The person under your tinfoil hat seems to be enjoying the experience. Very convincing!?. Can i order 2 or is 1 the limit? The closer we get to end stage the better these GIZMOS look!!

I had a picture of Wierd Al Yakovick but I never was able to see it and do not see it or any lead to it. How can you see it?

pubmed.ncbi.nlm.nih.gov/342...

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