ladave
03-31-2006, 02:34 PM
The clay baths are something I read about on Eric Edney's site.
View Full Version : Eric Edney and Even Better Now - Don't Be Fooled By This Scam
ladave
04-03-2006, 02:49 AM
I did a fair amount of reading about clay baths before deciding to try it. I too am skeptical and I certainly wouldn't buy something just because it is advertised on "Even Better Now" or any website for that matter. I decided to give this a try because, number one, it is relatively inexpensive, number two, it is a remedy for general detoxing used by numerous alternative healers, and three, Eric Edney makes very strong claims about the benefits. I fully acknowledge and am aware that, number one, there is no medical proof that this is an effective ALS remedy, and number two, that Edney is a controversial figure in the ALS world.
To me there's a big difference in spending $20,000 to fly off to China and let some quack drill a hole in your head, or spending $5,000 on some charlatan who claims you really have Lyme disease and he can "cure" you, as opposed to investing $40 in a foot bath. I'm determined to try a lot of different things so long as they make some common sense, do not cost a lot of money, and are non-invasive. The clay baths fall in that category for me.
FYI -> I was at a dance competition all weekend, yup, living my new life post-diagnosis.
To me there's a big difference in spending $20,000 to fly off to China and let some quack drill a hole in your head, or spending $5,000 on some charlatan who claims you really have Lyme disease and he can "cure" you, as opposed to investing $40 in a foot bath. I'm determined to try a lot of different things so long as they make some common sense, do not cost a lot of money, and are non-invasive. The clay baths fall in that category for me.
FYI -> I was at a dance competition all weekend, yup, living my new life post-diagnosis.
Forum Staff
04-03-2006, 03:28 AM
The whole "Eric Edney" business setup is entirely motivated by profit; their motivation is not to help anyone affected by ALS, their goal is to profit from people with ALS, people like you, while you are alive and looking for prolonged life and hope.
The Eric Edney books, the entire website, the Even Better Now business, and the "sister" websites (portals) are setup for one simple reason, to entice you, provide fake hope, and sell products, period.
The price of the products sold is a sad indication of the Even Better Now motivations; their products sell at 200-1000% profit; one can only imagine the amount of money "they" earn month to month.
Being knowledgeable about the Internet and online marketing practices provides me with enough insight to realize without doubt (100%) that their entire business is bordering on fraud.
From fake testimonials, inaccurate information, careful (and sometimes not so careful) use of language when claiming benefits, the Even Better Now business model is not only appauling, its a thorn in the side of the PALS/CALS community.
All this money wasted on false hope, money that could have gone to better ends, better care, and a better quality of life for decieved ALS patients - money wasted in the pockets of the Even Better Now business owners.
Anti-oxidants, antriviral therapy, herbal therapy, vitimans and mineral supplements, books etc. It's all half truths - these people have decided that the "ALS Market" is a profitable market, and the fact that ALS is a terminal illness provides them with lowered risk of legal action.
Who will complain? Most of the people defrauded won't realize they've been decieved. Many ALS patients will die within the first 3-5 years, one less worry for the Even Better Now business owners.
Even more appalling than their onslaught of the ALS market is the fact that the identical products are offered to "cure", or "help" or "prolong" life for other diseases. The exact same products are sold under other "sister websites" and different "product names", but the makeup of the product is identical, and miracously, it'll cure everything from cancer to ALS.
----------------------------------
I'll sign off with one thought, a testimonial ripped from an Even Better Now sister website:
I just wanted to tell you that your book is outstanding. My husband was just diagnosed with ALS in March. He wasn't even able to walk. Now he walks with no problems. I'm following your book strictly, it is improving his health.
I'm sure her husband will be cured soon.
The Eric Edney books, the entire website, the Even Better Now business, and the "sister" websites (portals) are setup for one simple reason, to entice you, provide fake hope, and sell products, period.
The price of the products sold is a sad indication of the Even Better Now motivations; their products sell at 200-1000% profit; one can only imagine the amount of money "they" earn month to month.
Being knowledgeable about the Internet and online marketing practices provides me with enough insight to realize without doubt (100%) that their entire business is bordering on fraud.
From fake testimonials, inaccurate information, careful (and sometimes not so careful) use of language when claiming benefits, the Even Better Now business model is not only appauling, its a thorn in the side of the PALS/CALS community.
All this money wasted on false hope, money that could have gone to better ends, better care, and a better quality of life for decieved ALS patients - money wasted in the pockets of the Even Better Now business owners.
Anti-oxidants, antriviral therapy, herbal therapy, vitimans and mineral supplements, books etc. It's all half truths - these people have decided that the "ALS Market" is a profitable market, and the fact that ALS is a terminal illness provides them with lowered risk of legal action.
Who will complain? Most of the people defrauded won't realize they've been decieved. Many ALS patients will die within the first 3-5 years, one less worry for the Even Better Now business owners.
Even more appalling than their onslaught of the ALS market is the fact that the identical products are offered to "cure", or "help" or "prolong" life for other diseases. The exact same products are sold under other "sister websites" and different "product names", but the makeup of the product is identical, and miracously, it'll cure everything from cancer to ALS.
----------------------------------
I'll sign off with one thought, a testimonial ripped from an Even Better Now sister website:
I just wanted to tell you that your book is outstanding. My husband was just diagnosed with ALS in March. He wasn't even able to walk. Now he walks with no problems. I'm following your book strictly, it is improving his health.
I'm sure her husband will be cured soon.
ladave
04-03-2006, 12:21 PM
Anti-oxidants, antriviral therapy, herbal therapy, vitimans and mineral supplements, books etc. It's all half truths - these people have decided that the "ALS Market" is a profitable market, and the fact that ALS is a terminal illness provides them with lowered risk of legal action.
I consider the above also something of a "half truth". It is true that many of the sellers of these products seek to make a profit by selling them to ALS patients (among others). That does not mean, however, that they are of no benefit. You throw a lot of products into the "fraud" category here- as defined, you would include products that have shown benefits in the ALS animal models and are currently being examined by top scientists to determine their potential benefits to ALS patients.
Obviously the quote from the Even Better Now website is absurd. Eric Edney advocates is equally absurd. The clay baths are available from numerous sources at lower prices than those charged by "Even Better Now". I did not purchase mine there. I'm under no illusion that it is some "miracle cure".
I consider the above also something of a "half truth". It is true that many of the sellers of these products seek to make a profit by selling them to ALS patients (among others). That does not mean, however, that they are of no benefit. You throw a lot of products into the "fraud" category here- as defined, you would include products that have shown benefits in the ALS animal models and are currently being examined by top scientists to determine their potential benefits to ALS patients.
Obviously the quote from the Even Better Now website is absurd. Eric Edney advocates is equally absurd. The clay baths are available from numerous sources at lower prices than those charged by "Even Better Now". I did not purchase mine there. I'm under no illusion that it is some "miracle cure".
David
04-03-2006, 12:35 PM
Good point, the intention of the post was to shed light on the entire Even Better Now fraud; and the products that they very carefully, and aggressively market towards patients suffering from ALS.
If a retailer lies to me once, twice, I'm very skeptical. When their entire online marketing is based on deception and aggressive marketing tactics people must be made aware.
DO NOT BUY PRODUCTS FROM EVEN BETTER NOW - EVER
To support this company, to endorse this company, and to recommend this company is adding fuel to a fire that needs to be extinguished.
With regards to clay foot baths, there's no credence, use or benefit to it.
PALS are better served to spend $2.50 at Walmart for a nice bubble bath in my opinion.
If a retailer lies to me once, twice, I'm very skeptical. When their entire online marketing is based on deception and aggressive marketing tactics people must be made aware.
DO NOT BUY PRODUCTS FROM EVEN BETTER NOW - EVER
To support this company, to endorse this company, and to recommend this company is adding fuel to a fire that needs to be extinguished.
With regards to clay foot baths, there's no credence, use or benefit to it.
PALS are better served to spend $2.50 at Walmart for a nice bubble bath in my opinion.
David
04-03-2006, 12:47 PM
To me there's a big difference in spending $20,000 to fly off to China and let some quack drill a hole in your head, or spending $5,000 on some charlatan who claims you really have Lyme disease and he can "cure" you, as opposed to investing $40 in a foot bath.
There's little difference other than the cost involved and the journey on a plane.
Sell one $20,000 mircale procedure, or 500 overpriced clay foot baths; makes little difference to the person receiving the profit.
The individuals online that are involved in these scams are careful to post to online forums such as this one, they recommend these products and spend time endorsing them. All their efforts are based on numbers and effort:
They post a few hundred "recommendations" about a product on forums where they've built up some reputation as a "forum member"
They setup a few websites to endorse the products
They add some fake testimonials
They pay for some advertising on Google so that people are able to find their products and websites
They continue to post information online using hope tactics
They sell their products and laugh all the way to the bank, on your backI'm determined to try a lot of different things so long as they make some common sense, do not cost a lot of money, and are non-invasive. The clay baths fall in that category for me.
They hope you will try many things
The more you try, the richer they'll getSadly, all it takes is a little bit of time to create some hype and get the "word" out there about their "products".
If someone steps up to say something negative they'll swarm you with responses - it doesn't matter if the responses are accurate or truthful... They're not concerned with convincing everyone of the "possible benefits"; a small handful is enough to make tens of thousands of dollars a month.
A happy living for a scoundrel.
There's little difference other than the cost involved and the journey on a plane.
Sell one $20,000 mircale procedure, or 500 overpriced clay foot baths; makes little difference to the person receiving the profit.
The individuals online that are involved in these scams are careful to post to online forums such as this one, they recommend these products and spend time endorsing them. All their efforts are based on numbers and effort:
They post a few hundred "recommendations" about a product on forums where they've built up some reputation as a "forum member"
They setup a few websites to endorse the products
They add some fake testimonials
They pay for some advertising on Google so that people are able to find their products and websites
They continue to post information online using hope tactics
They sell their products and laugh all the way to the bank, on your backI'm determined to try a lot of different things so long as they make some common sense, do not cost a lot of money, and are non-invasive. The clay baths fall in that category for me.
They hope you will try many things
The more you try, the richer they'll getSadly, all it takes is a little bit of time to create some hype and get the "word" out there about their "products".
If someone steps up to say something negative they'll swarm you with responses - it doesn't matter if the responses are accurate or truthful... They're not concerned with convincing everyone of the "possible benefits"; a small handful is enough to make tens of thousands of dollars a month.
A happy living for a scoundrel.
upila
04-03-2006, 01:25 PM
Just to mention my own experience with Eric's book/etc:
When my father was diagn with als, of course, I went on the internet to search for information. Of course, Eric's site was one of the first ones to come up. I called "his doctor's" office so that I may hear in person from the doctor who (in the book) was attesting that Eric could do push-ups, and was in such a great shape... Mind it, at that time, I was not even being sceptical, just desperate to hear something good and positive, to allows our family to keep going and help dealing with the horrible situation.
Well, the receptionist was very unfriendly and talked to me with open suspicion. She would barely confirm that I had the right office and the right doctor. And, NO, I could not speak with the doctor. And, NO, the doctor will not speak to me. He could only speak to me, if I was his patient, and NOT on the telephone.I persisted in asking about Eric's book, and if it was indeed true that the doctor was his doctor, and so on .... she would confirm NOTHING. You can imagine how I felt, when this array of hope was slammed - but at least from the start I was under no illusions about all the promotions and claims.
When my father was diagn with als, of course, I went on the internet to search for information. Of course, Eric's site was one of the first ones to come up. I called "his doctor's" office so that I may hear in person from the doctor who (in the book) was attesting that Eric could do push-ups, and was in such a great shape... Mind it, at that time, I was not even being sceptical, just desperate to hear something good and positive, to allows our family to keep going and help dealing with the horrible situation.
Well, the receptionist was very unfriendly and talked to me with open suspicion. She would barely confirm that I had the right office and the right doctor. And, NO, I could not speak with the doctor. And, NO, the doctor will not speak to me. He could only speak to me, if I was his patient, and NOT on the telephone.I persisted in asking about Eric's book, and if it was indeed true that the doctor was his doctor, and so on .... she would confirm NOTHING. You can imagine how I felt, when this array of hope was slammed - but at least from the start I was under no illusions about all the promotions and claims.
David
04-03-2006, 01:35 PM
Upila, I shouldn't be surprised, but I still find it shocking.
I feel terrible that you had to have the experience first hand; this is exactly the type of false hope and experience we're trying to educate people against.
This is also the reason we're vigilant against advertising and the posting of non-authorative links in these forums (explanation to follow):
Search engines pick up these posted links and use them to rank websites accordingly. These scammers post many links all around the internet and the search engines begin to think these websites are "good resources" for information about ALS.
The worst part is, individuals first diagnosed will find these websites and beleive what they read on the fraudulent evenbetternow.com website. Their first interaction with the company will most likely be the purchase of the book.
The book then tells people what products are required to "improve your health". What follows? The purchase of the rest of the products at the cost of thousands of dollars a month.
The book is only the beginning the Even Better Now fraud.
I feel terrible that you had to have the experience first hand; this is exactly the type of false hope and experience we're trying to educate people against.
This is also the reason we're vigilant against advertising and the posting of non-authorative links in these forums (explanation to follow):
Search engines pick up these posted links and use them to rank websites accordingly. These scammers post many links all around the internet and the search engines begin to think these websites are "good resources" for information about ALS.
The worst part is, individuals first diagnosed will find these websites and beleive what they read on the fraudulent evenbetternow.com website. Their first interaction with the company will most likely be the purchase of the book.
The book then tells people what products are required to "improve your health". What follows? The purchase of the rest of the products at the cost of thousands of dollars a month.
The book is only the beginning the Even Better Now fraud.
David
04-03-2006, 01:45 PM
Just as a heads up for the posts that follow; I've already noticed a "growing" interest in the number of visitors suddenly to this thread.
An unusually high number of visits from users and members; prepare for the "onslaught" I mentioned earlier.
I'd like to think posting this message will deter them from coming, but that might be wishful thinking.
Update/Edit: This message worked for now, two of our "members" were posting a reply but must have decided against it; they didn't complete their replies and have logged out of the forum. A small victory.
An unusually high number of visits from users and members; prepare for the "onslaught" I mentioned earlier.
I'd like to think posting this message will deter them from coming, but that might be wishful thinking.
Update/Edit: This message worked for now, two of our "members" were posting a reply but must have decided against it; they didn't complete their replies and have logged out of the forum. A small victory.
ladave
04-03-2006, 02:06 PM
I certainly don't have any disagreement with the vigilance this site uses to sniff out scam artists. I think it is clear from all the other posts I've made here that I'm not a shill for Edney or "Even Better Now".
When I first was diagnosed with ALS and began investigating, I too noticed that Edney and "Even Better Now" popped up on just about every variant of search I made under "ALS". This of course was very suspicious. However my brother bought the Edney book for me upon hearing of my diagnosis. I read the book and came away with very mixed feelings. On the one hand Edney comes off as a sincere fellow who has succeeded in reversing some of his ALS symptoms. On the other hand some of his ideas seem farfetched, to say the least.
We cannot know if Edney's regimen actually helped him or if he is just in that small category of fortunate PALS whose disease process stops (the scientific literature shows there are some cases like that, which medical science cannot explain). Then there is that "Even Better Now" website, which clearly is a scam; it isn't clear if Edney owns the website or just recommends it (the website identifies "Andrea Nichols, M.S.W. (Community Health),Natural Health Consultant" as "Founder and Co-owner" and gives an Arizona address-is Edney the other "co-owner"? It doesn't say).
Bottom line, I'm just not sure that all alternative healing is a "scam", even though there certainly are alternative healing scams out there.
As for the foot baths, which started this discussion, so far I've taken three of them and noticed no benefit. I'd suggest anyone who might be interested in trying them not buy them from "Even Better Now" where they are clearly overpriced. In fact, I'd avoid that site on general principles because of the "snake oil" sales pitches contained therein.
When I first was diagnosed with ALS and began investigating, I too noticed that Edney and "Even Better Now" popped up on just about every variant of search I made under "ALS". This of course was very suspicious. However my brother bought the Edney book for me upon hearing of my diagnosis. I read the book and came away with very mixed feelings. On the one hand Edney comes off as a sincere fellow who has succeeded in reversing some of his ALS symptoms. On the other hand some of his ideas seem farfetched, to say the least.
We cannot know if Edney's regimen actually helped him or if he is just in that small category of fortunate PALS whose disease process stops (the scientific literature shows there are some cases like that, which medical science cannot explain). Then there is that "Even Better Now" website, which clearly is a scam; it isn't clear if Edney owns the website or just recommends it (the website identifies "Andrea Nichols, M.S.W. (Community Health),Natural Health Consultant" as "Founder and Co-owner" and gives an Arizona address-is Edney the other "co-owner"? It doesn't say).
Bottom line, I'm just not sure that all alternative healing is a "scam", even though there certainly are alternative healing scams out there.
As for the foot baths, which started this discussion, so far I've taken three of them and noticed no benefit. I'd suggest anyone who might be interested in trying them not buy them from "Even Better Now" where they are clearly overpriced. In fact, I'd avoid that site on general principles because of the "snake oil" sales pitches contained therein.
ladave
04-03-2006, 02:31 PM
There's little difference other than the cost involved and the journey on a plane.
Sell one $20,000 mircale procedure, or 500 overpriced clay foot baths; makes little difference to the person receiving the profit.
The individuals online that are involved in these scams are careful to post to online forums such as this one, they recommend these products and spend time endorsing them. All their efforts are based on numbers and effort:
They post a few hundred "recommendations" about a product on forums where they've built up some reputation as a "forum member"
They setup a few websites to endorse the products
They add some fake testimonials
They pay for some advertising on Google so that people are able to find their products and websites
They continue to post information online using hope tactics
They sell their products and laugh all the way to the bank, on your back
They hope you will try many things
The more you try, the richer they'll getSadly, all it takes is a little bit of time to create some hype and get the "word" out there about their "products".
This forum has become such an important place of support for me that I feel it necessary to come back on and respond to the above, just to say that I'm not one of "those people" referred to in the above comments. I would shudder to think that people here would stop resonding to me and interacting with me because they thought I just came here to build up some "points" so I could then shill for some product or other.
For the record, if you look back, my comment about clay baths was partof a much longer post I made in response to a request another forum member made about what I was doing. That post contained the caveat that I had no idea if any of these things were actually helping me and that I was not recommending them for anybody else; simply that these seemed to be the things that made the most sense to me to try.
And that, I hope, will be the end of this discussion for me:)
Sell one $20,000 mircale procedure, or 500 overpriced clay foot baths; makes little difference to the person receiving the profit.
The individuals online that are involved in these scams are careful to post to online forums such as this one, they recommend these products and spend time endorsing them. All their efforts are based on numbers and effort:
They post a few hundred "recommendations" about a product on forums where they've built up some reputation as a "forum member"
They setup a few websites to endorse the products
They add some fake testimonials
They pay for some advertising on Google so that people are able to find their products and websites
They continue to post information online using hope tactics
They sell their products and laugh all the way to the bank, on your back
They hope you will try many things
The more you try, the richer they'll getSadly, all it takes is a little bit of time to create some hype and get the "word" out there about their "products".
This forum has become such an important place of support for me that I feel it necessary to come back on and respond to the above, just to say that I'm not one of "those people" referred to in the above comments. I would shudder to think that people here would stop resonding to me and interacting with me because they thought I just came here to build up some "points" so I could then shill for some product or other.
For the record, if you look back, my comment about clay baths was partof a much longer post I made in response to a request another forum member made about what I was doing. That post contained the caveat that I had no idea if any of these things were actually helping me and that I was not recommending them for anybody else; simply that these seemed to be the things that made the most sense to me to try.
And that, I hope, will be the end of this discussion for me:)
TBear
04-03-2006, 03:12 PM
... anyone who can twostep to country and western music with clay on their feet gets my respect!
Cheers
T.
Cheers
T.
MarciaA
04-03-2006, 03:42 PM
The worst part is, individuals first diagnosed will find these websites and beleive what they read on the fraudulent evenbetternow.com website. Their first interaction with the company will most likely be the purchase of the book.
Whoa! I feel REALLY stupid now! :( That's exactly what I did when I first learned of my sister's diagnosis! I finally finished reading the book last night. But as you said, I was looking for a miracle and was sucked in. I'm more intelligent than that and should have known better, I guess. But when you're deep in denial, I guess you'll turn to anything that might seem to be helpful.
Kudos to you, upila, for actually trying to call the doctor!
Marcia
Whoa! I feel REALLY stupid now! :( That's exactly what I did when I first learned of my sister's diagnosis! I finally finished reading the book last night. But as you said, I was looking for a miracle and was sucked in. I'm more intelligent than that and should have known better, I guess. But when you're deep in denial, I guess you'll turn to anything that might seem to be helpful.
Kudos to you, upila, for actually trying to call the doctor!
Marcia
CIARA1
04-03-2006, 07:51 PM
does anybody know if eric edney really has als or is he faking that too
wondering
kim
wondering
kim
David
04-03-2006, 08:19 PM
Marcia, don't feel silly, how could anyone possibly know, who would ever guess that people could be so callous and malicious just to make a buck. This whole experience has been an eye opener for me; if only we could all learn this hard lesson for $20-$30 and be wiser for the experience.
Dave, the clay foot baths are most definitely sold under fraudulent terms. Any clay foot bath product being sold for the purpose and use by ALS patients to improve their health, any use other than "clay foot bath to soothe feet, soften calluses and unravel daily damage", is being sold under false pretenses.
Yes, these foot baths can be had at a cheaper price, unfortunately the first XX pages of any search engine are all links to places that sell this product as a "benefit" for ALS patients. Unfortunately, people that have read about the clay foot baths product will NOT purchase the non-ALS benefitting clay foot baths, they'll naturally purchase the product that mentions ALS. Sad, true, and very profitable for the small handful of website owners that own hundreds of clay foot bath product sites.
Remember, it doesn't matter if you purchase the clay foot bath from Eric Edney's website, the EBN website, or any of the other websites that sells the ALS-benefitting clay foot bath, chances are, the same people own all the websites; they'll even have different prices so that when you find one for half the price you think you're getting a deal.
It's a complete SCAM and it makes me sick to my stomach.
Dave, I don't question your ethics or motivations, there's no possible way I could know what your intentions are.
I am curious why you continue to defend the clay foot baths and suggest that it's "worth trying" - this is a product endorsement without question. Originally you mentioned the low cost as a good reason; however, I fail to see any correlation between product cost and benefit.
What has convinced you that it's useful or beneficial? I assume it must be the Eric Edney book, or information you have read online; both of which have been shown to be misleading.
It's clay foot baths today, and it will be a "new and incredible" product tomorrow; I have no illusions, these scams will continue; and I can only hope that myself, and others, are around to put a stop to it before anyone purchases anything.
I'm very proud that ALSforums is trying to stop this nonsense, I only wish that the BrainTalk forums would do the same. The BrainTalk forum has to be one of the largest forums for ALS patients and its absolutely filled with false hope, veiled salesmen, and individuals only posting to make a dollar.
I question the motivations of the individuals responsible for running the BrainTalk forums. Those forums and their sister sites in their "webring" are all generating large amounts of revenue; such a shame. The worst part is the BT forums are promoted by what appear to be reputable organizations.
However, we'll leave the BrainTalk chat for another day, as I'm tired and worn out from this discussion :(
Stay tuned though, the discussion will be interesting and I'm sure there's a lot going on over at BrainTalk that most of the legitimate members are completely unaware of.
Hopefully, in time, individuals will choose to abandonthe BT forums completely.
Dave, the clay foot baths are most definitely sold under fraudulent terms. Any clay foot bath product being sold for the purpose and use by ALS patients to improve their health, any use other than "clay foot bath to soothe feet, soften calluses and unravel daily damage", is being sold under false pretenses.
Yes, these foot baths can be had at a cheaper price, unfortunately the first XX pages of any search engine are all links to places that sell this product as a "benefit" for ALS patients. Unfortunately, people that have read about the clay foot baths product will NOT purchase the non-ALS benefitting clay foot baths, they'll naturally purchase the product that mentions ALS. Sad, true, and very profitable for the small handful of website owners that own hundreds of clay foot bath product sites.
Remember, it doesn't matter if you purchase the clay foot bath from Eric Edney's website, the EBN website, or any of the other websites that sells the ALS-benefitting clay foot bath, chances are, the same people own all the websites; they'll even have different prices so that when you find one for half the price you think you're getting a deal.
It's a complete SCAM and it makes me sick to my stomach.
Dave, I don't question your ethics or motivations, there's no possible way I could know what your intentions are.
I am curious why you continue to defend the clay foot baths and suggest that it's "worth trying" - this is a product endorsement without question. Originally you mentioned the low cost as a good reason; however, I fail to see any correlation between product cost and benefit.
What has convinced you that it's useful or beneficial? I assume it must be the Eric Edney book, or information you have read online; both of which have been shown to be misleading.
It's clay foot baths today, and it will be a "new and incredible" product tomorrow; I have no illusions, these scams will continue; and I can only hope that myself, and others, are around to put a stop to it before anyone purchases anything.
I'm very proud that ALSforums is trying to stop this nonsense, I only wish that the BrainTalk forums would do the same. The BrainTalk forum has to be one of the largest forums for ALS patients and its absolutely filled with false hope, veiled salesmen, and individuals only posting to make a dollar.
I question the motivations of the individuals responsible for running the BrainTalk forums. Those forums and their sister sites in their "webring" are all generating large amounts of revenue; such a shame. The worst part is the BT forums are promoted by what appear to be reputable organizations.
However, we'll leave the BrainTalk chat for another day, as I'm tired and worn out from this discussion :(
Stay tuned though, the discussion will be interesting and I'm sure there's a lot going on over at BrainTalk that most of the legitimate members are completely unaware of.
Hopefully, in time, individuals will choose to abandonthe BT forums completely.
John1
04-03-2006, 08:23 PM
... I would shudder to think that people here would stop resonding to me and interacting with me because they thought I just came here to build up some "points" so I could then shill for some product or other...
Not to worry at this end. Your opinions sit rock-solid with me.
Not to worry at this end. Your opinions sit rock-solid with me.
David
04-03-2006, 08:45 PM
CIARA,
I'm not a rich fella, quite the opposite actually, I'm borderline impoverished.
HOWEVER, I am willing to pay to meet Eric Edney, and on my dime, I would be willing to fly him to Toronto for a discussion; I suspect this offer will not be accepted.
Whether Eric has ALS would be of no consequence to me personally; I'd be very curious to see his income tax statement though and where his income is derived from. I think this would be very informative.
Has anyone ever met Eric Edney? Is Eric Edney a prominant figure in any recognizable and trustworthy ALS organizations? Eric's in your backyard Dave, have you met him?
I find these comments by Eric and his wife very interesting:
This book was written for the benefit of other PALS. It was not written to make money. If I wanted to write a book to make money, I would have written about sex and violence
Further on in their sales pitch on the BT forums is this comment:
This book is offered freely and with no obligation. However, there is a limit. I am retired and have a little bit money so I can afford to give away some books.
My personal favourite is the religious comparison:
You have heard the tale of David and Goliath? This is my David’s (Eric’s) story about how he has tamed that awful Goliath (ALS).
Thanks for reading.
I'm not a rich fella, quite the opposite actually, I'm borderline impoverished.
HOWEVER, I am willing to pay to meet Eric Edney, and on my dime, I would be willing to fly him to Toronto for a discussion; I suspect this offer will not be accepted.
Whether Eric has ALS would be of no consequence to me personally; I'd be very curious to see his income tax statement though and where his income is derived from. I think this would be very informative.
Has anyone ever met Eric Edney? Is Eric Edney a prominant figure in any recognizable and trustworthy ALS organizations? Eric's in your backyard Dave, have you met him?
I find these comments by Eric and his wife very interesting:
This book was written for the benefit of other PALS. It was not written to make money. If I wanted to write a book to make money, I would have written about sex and violence
Further on in their sales pitch on the BT forums is this comment:
This book is offered freely and with no obligation. However, there is a limit. I am retired and have a little bit money so I can afford to give away some books.
My personal favourite is the religious comparison:
You have heard the tale of David and Goliath? This is my David’s (Eric’s) story about how he has tamed that awful Goliath (ALS).
Thanks for reading.
ladave
04-03-2006, 11:38 PM
David-
First, I've already explained why I decided to take a flyer on the foot baths. $30 on EBay bought me enough clay for about 10 foot baths, if I see no benefit at that time I won't order a second batch. As to the cost issue, I think that's plain enough as well, though you obviously disagree with my reasoning. And I'm not "contiunuing to defend" the foot baths- already said I saw no benefit so far. Really, at this point I'm defending my right as a PALS to discuss things I've tried without being branded a "shill" by the moderator of the forum.
I understand your zeal to squelch the scam artists, but be careful about squelching honest discussion about alternate healing at the same time. Legitimate PALS belonging to this site will want to discuss various things they've tried. I don't get how a statement that I thought something was "worth a try" is a "product endorsement" when the very next sentence says I'm not recommending this for anyone else.
I have not met Mr. Edney. He lives over 100 miles from me, not exactly my "back yard". Many statements in his book led me to believe that he and I would not exactly get along if we met- for one thing I'd like to know where he gets off saying anyone who doesn't have their amalgam fillings removed is "gonna die". Edney impresses me as a zealot about a method of treatment that is wholly unproven. As to whether he's a fraud in saying he has ALS, he gives enough specifics for anyone to determine how truthful he is about that. For example, he claims to have been diagnosed at Loma Linda Hospital. That is an ALSA clinic which would not allow itself to be used to fraudulently misrepresent the status of a patient; a few calls could probably uncover whether that is true or not. I tend to think he would not have made such an easily refutable claim were it not true, but you never know- sometimes the most brazen lies are the least likely to be uncovered.
Anyway I agree with David that it really doesn't matter much if he's a true PALS, the real question is do the remedies he suggests work. So far there is no proof of his claims. "I used it and got better" is not "evidence" of anything to me.
First, I've already explained why I decided to take a flyer on the foot baths. $30 on EBay bought me enough clay for about 10 foot baths, if I see no benefit at that time I won't order a second batch. As to the cost issue, I think that's plain enough as well, though you obviously disagree with my reasoning. And I'm not "contiunuing to defend" the foot baths- already said I saw no benefit so far. Really, at this point I'm defending my right as a PALS to discuss things I've tried without being branded a "shill" by the moderator of the forum.
I understand your zeal to squelch the scam artists, but be careful about squelching honest discussion about alternate healing at the same time. Legitimate PALS belonging to this site will want to discuss various things they've tried. I don't get how a statement that I thought something was "worth a try" is a "product endorsement" when the very next sentence says I'm not recommending this for anyone else.
I have not met Mr. Edney. He lives over 100 miles from me, not exactly my "back yard". Many statements in his book led me to believe that he and I would not exactly get along if we met- for one thing I'd like to know where he gets off saying anyone who doesn't have their amalgam fillings removed is "gonna die". Edney impresses me as a zealot about a method of treatment that is wholly unproven. As to whether he's a fraud in saying he has ALS, he gives enough specifics for anyone to determine how truthful he is about that. For example, he claims to have been diagnosed at Loma Linda Hospital. That is an ALSA clinic which would not allow itself to be used to fraudulently misrepresent the status of a patient; a few calls could probably uncover whether that is true or not. I tend to think he would not have made such an easily refutable claim were it not true, but you never know- sometimes the most brazen lies are the least likely to be uncovered.
Anyway I agree with David that it really doesn't matter much if he's a true PALS, the real question is do the remedies he suggests work. So far there is no proof of his claims. "I used it and got better" is not "evidence" of anything to me.
Al
04-04-2006, 12:36 AM
Just a thought here guys. If you called Loma Linda and asked if anyone was a patient they would not tell you because of Dr. patient privacy laws.He could name off 10 hospitals he's been to and you or I couldn't legally find out if he was lying. Big lawsuit in California for that stuff. I'll still interact with you Dave. Everyone is entitled to an opinion but as David says just don't advertize with it.
CIARA1
04-04-2006, 05:13 AM
oh i see people are saying dave is working for companys that sell these products is that what is going on here? well i have e-mailed ladave several times asking his advise and never once has he suggested to me to use any product or herbal remedy. and you can bet i don`t work for any company out there cause i am broke. and if he wants to stick his feet in clay who cares if it makes him feel better then do it. mind over matter.
best wishes
kim
best wishes
kim
David
04-04-2006, 06:18 AM
Ciara, I did not mean to mislead anyone in thinking dave works for a clay foot bath company or affiliate. You are entirely right, dave is absolutely entitled to stick his feet where ever he chooses - and a warm foot bath is a good place to put them. ;-)
Dave, after reading your response - you are entirely and completely correct in everything you said. I apologize if you were offended, or feel my earlier posts put your character in question - it wasn't my intention.
Dave, after reading your response - you are entirely and completely correct in everything you said. I apologize if you were offended, or feel my earlier posts put your character in question - it wasn't my intention.
ladave
04-04-2006, 11:25 AM
Thanks, David. And Al, I agree, I will be careful not to advertise for anything.
As to Edney and Loma Linda- one could ask him to waive the privilege and allow Loma Linda to release his records. Refusal would indicate something suspicious.
As to Edney and Loma Linda- one could ask him to waive the privilege and allow Loma Linda to release his records. Refusal would indicate something suspicious.
Chad
05-01-2006, 04:24 PM
Hi Folks,
I would like to say a word about Eric Edney, it's a scam, the website sells all kinds of crap, false hope galore.
I would like to say a word about Eric Edney, it's a scam, the website sells all kinds of crap, false hope galore.
Al
05-01-2006, 04:32 PM
No one is badmouthing Eric Edney, but some have been less than pleased with his ideas. Take care. Al.
David
05-01-2006, 05:34 PM
Time will tell, I'm still absolutely shocked that nobody from the Eric Edney camp has contacted us directly about this thread.
I know that I would be absolutely shocked and upset if I was Eric Edney (if this guy even exists, I've seen no proof yet, which leads me to believe that Eric Edney is a complete fake and fraud).
This thread is less than friendly towards him and one would expect him to have contacted us regarding it.
His lack of response is definitely not an indication of dishonesty, but it does seem strange.
I know that I would be absolutely shocked and upset if I was Eric Edney (if this guy even exists, I've seen no proof yet, which leads me to believe that Eric Edney is a complete fake and fraud).
This thread is less than friendly towards him and one would expect him to have contacted us regarding it.
His lack of response is definitely not an indication of dishonesty, but it does seem strange.
Barbie4
05-01-2006, 09:16 PM
I don't know how I missed this thread before, but just tripped upon it tonight.
Interesting discussion guys. I will definately keep away from that site and or sites.
Barb :)
Interesting discussion guys. I will definately keep away from that site and or sites.
Barb :)
ekoozmin
05-03-2006, 07:11 AM
David--
I think the lack of response is fairly typical of people whose "radical" ideas and advice are questioned. They are more likely to take the high road and not engage inthe discussion because they are so confident that they are right that they feel it is not necessary to respond. Am I making sense?:?
Liz
I think the lack of response is fairly typical of people whose "radical" ideas and advice are questioned. They are more likely to take the high road and not engage inthe discussion because they are so confident that they are right that they feel it is not necessary to respond. Am I making sense?:?
Liz
Thelma
05-04-2006, 10:36 AM
This is the kind of thing that will bring light this forum.
*inflammatory remarks removed*
*please refrain from using foul language*
*inflammatory remarks removed*
*please refrain from using foul language*
David
05-04-2006, 09:43 PM
Hrmmmmm, huh?
Al
05-05-2006, 12:24 AM
Thelma: Slow down and take a big breath. Most of your posts seem to be filled with anger and I'm just not sure who you are angry at. I know that this a very frustrating illness and we have no idea of who you are or where you are from. Would you care to enlighten us? Do you have ALS? Where are you from? I think a little information is forthcoming rather than badgering. Who are you and why are you upset with us? And which forum are you referring to that was a class A failure?
The ball's in your court. Fess up or shut up as we say here in Ontario.
The ball's in your court. Fess up or shut up as we say here in Ontario.
MtPockets
08-30-2006, 08:36 AM
Just goes to show they are alive and well today. They will sell anything from seaweed to magical potion injections.
Might as well visit a witch doctor too while you are at it.
Throw dem bones, cast that spell, make me well as hell.
Oh but first SHOW ME THE MONEY.
Just my opinion, I have ALS and I want to know the FACTS......Not false hope, miracle cure, pie in the sky. I know I am dying and I am getting ready for it the only way I know how to, by praying and trusting God. I take the medicine my Neurologist and other doctors recommends, Rilutek, B-12 shots for energy(Works a little), Valium, and Lortab for pain when I have it. My doctors have said their goal is to make me as comfortable as possible, that is all they can do while I slowly die.
I know and respect that others have different beliefs. You walk your way and I'll walk mine and I'll give you the right and space to do what you feel is right. Please do some more research before you jump into these schemes. There are plenty of places on the internet that will tell you what has happened to some of these people who have tried these miracle cures. Most are dead now and all have less money. Don't believe me do a search here for different treatments and see the results for yourself.
Saying all that, I feel so sorry for people who are being ripped off on false hope and false cures just for $$$$$$$$$ That money could be better spent on real research.
Think of the future when your loved one is gone, like me for example, my wife will have no income. 60 years old and bills everywhere and no income. The only income will be Social Security survivor benefits which are a joke. They will not even buy groceries. So if my wife spent one dollar on some false hope cure when there is NONE, I would be greatly upset. Because I love her and I am seriously concerned about how she will live after I am gone and the income is gone also. How will she survive?
This is just one of the reasons I get so upset when I see people not being honest about these treatments, and promises of a cure. It hurts to see other people hurt. Even having said all that, it's your money, and I support the right for you to do whatever you think is best in your situation.
BUT, THERE IS NO CURE, YET.........
God Bless you and your loved ones,
Big AL
:oops:
Might as well visit a witch doctor too while you are at it.
Throw dem bones, cast that spell, make me well as hell.
Oh but first SHOW ME THE MONEY.
Just my opinion, I have ALS and I want to know the FACTS......Not false hope, miracle cure, pie in the sky. I know I am dying and I am getting ready for it the only way I know how to, by praying and trusting God. I take the medicine my Neurologist and other doctors recommends, Rilutek, B-12 shots for energy(Works a little), Valium, and Lortab for pain when I have it. My doctors have said their goal is to make me as comfortable as possible, that is all they can do while I slowly die.
I know and respect that others have different beliefs. You walk your way and I'll walk mine and I'll give you the right and space to do what you feel is right. Please do some more research before you jump into these schemes. There are plenty of places on the internet that will tell you what has happened to some of these people who have tried these miracle cures. Most are dead now and all have less money. Don't believe me do a search here for different treatments and see the results for yourself.
Saying all that, I feel so sorry for people who are being ripped off on false hope and false cures just for $$$$$$$$$ That money could be better spent on real research.
Think of the future when your loved one is gone, like me for example, my wife will have no income. 60 years old and bills everywhere and no income. The only income will be Social Security survivor benefits which are a joke. They will not even buy groceries. So if my wife spent one dollar on some false hope cure when there is NONE, I would be greatly upset. Because I love her and I am seriously concerned about how she will live after I am gone and the income is gone also. How will she survive?
This is just one of the reasons I get so upset when I see people not being honest about these treatments, and promises of a cure. It hurts to see other people hurt. Even having said all that, it's your money, and I support the right for you to do whatever you think is best in your situation.
BUT, THERE IS NO CURE, YET.........
God Bless you and your loved ones,
Big AL
:oops:
DavidGL
08-30-2006, 09:20 AM
My two cents...
First, here are "Dr" Nissen's qualifications (note *0* rigorous medical school training):
Educated in Germany, Dr. Nissen studied physical therapy before becoming a Naturopathic Physician in Berlin. He completed his education with extensive training in Dynamic Spinal Vertebra Therapy, Acupuncture-Massage , and Auriculotherapy. He also trained in Ayurvedic Medicine in India under Dr. Subhash Ranade. Dr. Nissen undertook additional specific environmental courses in Germany and the U.S. and has written several articles about environmental health.
Does anyone really want to trust someone like this? I know it is tempting to abandon our conventional medical system (after all, they haven't cured anyone of this disease) but sometimes that's how it is. We are not anywhere near such an advanced stage in medical practice that we can understand all of the things that cause our bodies to malfunction. But, really, what makes anyone think that someone like this pseudo doctor is going to be any better?
Let's move on to the aspect of altrusim. Stop and think for a second. There is no known cure for this disease! None. Nada. Here I am on the edge of being diagnosed with it (still seeing the possibility of it being something else for me) but I know two men who have it (one is gone now). Additionally, I've been put into a position of having to learn a lot more about it and a lot more about the people who have it. So, what if I discovered a system of treatments that could slow/cure it? Imagine that for yourselves too. What if *you* discovered some such thing? Go beyond that even. Suppose you were someone like this Eric person? You've read his story. He's done very well for himself. He does not need extra income. Now if it were me, and I could prove that I have been improved, there would be two things I would do. One, I would publish the book on-line as an e-book. It would be on my site, free of charge, to anyone wanting to load it down. I would also provide a printed copy for anyone who asked. That would be free of charge, as well. I wouldn't even charge for shipping. If I could not afford the printing free of charge I would find it from charitable organizations and businessmen. You may have noticed that he is a successful businessman (owns his own insurance agency). He must have many many contacts in the business world who would be more than happy to fund such an effort. Second, I would publish, and make available to anyone who asks, complete and certified documentation proving that I have had success in treating my ALS. I would also provide the contact information for everyone in the medical profession who I have seen and knows first-hand what I've been through. Without doubt, these professionals would be more than happy to help get the message out. I would also provide contact information for the others cured. Surely they would love to be contacted by anyone. Wouldn't you? If you had used such a remedy--and it worked--wouldn't you be shouting it to the world? I would give up my work and travel to every ALS clinic I could get to and share my story, information and proof. And I have no doubt that I could find wealty people willing to fund it. If you have the proof, all you have to do is ask.
Now here is the really important point. If I (or you) had all of this documented so that I (or you) could absolutely prove that it works, I (or you) would contact medical scientists who would like nothing better than to have an opportunity to do the research and then publish their findings in medical journals that will allow for appropriate peer review. That is a major feather-in-the-cap for any scientific researcher in any field.
Since the first thing that catches your eye on Eric's site is the list of CCs he is taking...what does that tell you? Maybe he is in it for the money? Where is the altruism?
Whenever I look at sites proclaiming to offer miracle cures that conventional medicine can't offer, the first thing I look for is whether or not they are selling products. If they are--boom--I'm gone. Scammers sell, altruists don't.
Dang, I wish it were possible to do something about creeps like this!
David L
First, here are "Dr" Nissen's qualifications (note *0* rigorous medical school training):
Educated in Germany, Dr. Nissen studied physical therapy before becoming a Naturopathic Physician in Berlin. He completed his education with extensive training in Dynamic Spinal Vertebra Therapy, Acupuncture-Massage , and Auriculotherapy. He also trained in Ayurvedic Medicine in India under Dr. Subhash Ranade. Dr. Nissen undertook additional specific environmental courses in Germany and the U.S. and has written several articles about environmental health.
Does anyone really want to trust someone like this? I know it is tempting to abandon our conventional medical system (after all, they haven't cured anyone of this disease) but sometimes that's how it is. We are not anywhere near such an advanced stage in medical practice that we can understand all of the things that cause our bodies to malfunction. But, really, what makes anyone think that someone like this pseudo doctor is going to be any better?
Let's move on to the aspect of altrusim. Stop and think for a second. There is no known cure for this disease! None. Nada. Here I am on the edge of being diagnosed with it (still seeing the possibility of it being something else for me) but I know two men who have it (one is gone now). Additionally, I've been put into a position of having to learn a lot more about it and a lot more about the people who have it. So, what if I discovered a system of treatments that could slow/cure it? Imagine that for yourselves too. What if *you* discovered some such thing? Go beyond that even. Suppose you were someone like this Eric person? You've read his story. He's done very well for himself. He does not need extra income. Now if it were me, and I could prove that I have been improved, there would be two things I would do. One, I would publish the book on-line as an e-book. It would be on my site, free of charge, to anyone wanting to load it down. I would also provide a printed copy for anyone who asked. That would be free of charge, as well. I wouldn't even charge for shipping. If I could not afford the printing free of charge I would find it from charitable organizations and businessmen. You may have noticed that he is a successful businessman (owns his own insurance agency). He must have many many contacts in the business world who would be more than happy to fund such an effort. Second, I would publish, and make available to anyone who asks, complete and certified documentation proving that I have had success in treating my ALS. I would also provide the contact information for everyone in the medical profession who I have seen and knows first-hand what I've been through. Without doubt, these professionals would be more than happy to help get the message out. I would also provide contact information for the others cured. Surely they would love to be contacted by anyone. Wouldn't you? If you had used such a remedy--and it worked--wouldn't you be shouting it to the world? I would give up my work and travel to every ALS clinic I could get to and share my story, information and proof. And I have no doubt that I could find wealty people willing to fund it. If you have the proof, all you have to do is ask.
Now here is the really important point. If I (or you) had all of this documented so that I (or you) could absolutely prove that it works, I (or you) would contact medical scientists who would like nothing better than to have an opportunity to do the research and then publish their findings in medical journals that will allow for appropriate peer review. That is a major feather-in-the-cap for any scientific researcher in any field.
Since the first thing that catches your eye on Eric's site is the list of CCs he is taking...what does that tell you? Maybe he is in it for the money? Where is the altruism?
Whenever I look at sites proclaiming to offer miracle cures that conventional medicine can't offer, the first thing I look for is whether or not they are selling products. If they are--boom--I'm gone. Scammers sell, altruists don't.
Dang, I wish it were possible to do something about creeps like this!
David L
Danny
09-03-2006, 03:37 PM
Hi, my name is Danny and I was my mum Lynda’s carer up until her untimely death from MND on the 13th of July 2006. I started a web site for my mum to tell her story of her life and the battle she had with her illness, even though she has now passed on to a better place I will be keeping her web site going until there is definitive cure for this horrible disease. As well as telling the story of my mums life, good times and bad, I will be trying to put as much useful and accurate information about MND on it as possible. The reason I am writing a comment in this forum is that I was shocked to read that Eric Edney could possibly be a fraud, when my mum first diagnosed herself with ALS (yes she diagnosed herself, the Doctor actually called her a hypochondriac and told her to go away), the first book she bought after searching the net for answers was Eric Edneys. She tried to follow his regime as much as possible, but due to finances this proved very hard to do.
I am some what unsettled to think that we were conned, and extremely angry to think that my mum was given false hope by reading this book. I actually have information about Eric’s book (review written by my mum) on my web site and a link so people can buy it, I am absolutely in no way out to make money from people who buy it through my site as all money made from the site will be donated to the MND Association, but I also don’t want anybody else to make money from it by promoting false hope. If these claims about this book are true then I will be removing it from my site, I’m not sure what to do as my mum had such a belief in what Eric had to say, I know the world has its dark side but for someone to make money in this way is just pure evil.
I am some what unsettled to think that we were conned, and extremely angry to think that my mum was given false hope by reading this book. I actually have information about Eric’s book (review written by my mum) on my web site and a link so people can buy it, I am absolutely in no way out to make money from people who buy it through my site as all money made from the site will be donated to the MND Association, but I also don’t want anybody else to make money from it by promoting false hope. If these claims about this book are true then I will be removing it from my site, I’m not sure what to do as my mum had such a belief in what Eric had to say, I know the world has its dark side but for someone to make money in this way is just pure evil.
AmberF
09-03-2006, 09:02 PM
Danny, eric edney and the "book" heavily promote detoxification and supplements. After speaking with doctors and doing my own research there's no proven help to be found in either. I tell friends not to waste their money on any of those websites, multi level marketing schemes or detox programs - the only place you hear about them is on websites.
If it worked you would be introduced to these treatments by the ALS professionals and doctors. Not online hacks and market made profiteers.
If it worked you would be introduced to these treatments by the ALS professionals and doctors. Not online hacks and market made profiteers.
MtPockets
09-04-2006, 09:39 AM
If you go to a site claiming to have some kind of CURE for ALS MND the first sign of trouble is if they sale something, ask for your credit card, bank account number or as I like to say, "SHOW ME THE MONEY".
If you see that be afraid. very afraid. IF there was a legitimate cure, don't you think Our Neurologists would be the first to tell us? They want to keep us alive so they can make more money off us too.
Also if you research the credintials of the site Guru you'll always find they are not medical professionals. Another words they have not been properly trained. Most would not recognize a motor neuron under a microscope. Yet they claim to be able to stop the progression of the disease.
I spoke with my neurologist about such people yesterday. She is very upset about all these websites bilking money out of people with false hope cures. There was a comment made that she thought a lot of these sites where the people claim to have ALS, MND, had never even had the disease to start with. There are some of these people claiming to have lived 18 years with als. That just doesn't happen. They are there just to take your money.
Danny look at the end result of the money spent on your Mum. What where the results. She died. So did the claims made by this web site help your Mum? I rest my case.
I'm sorry you had to go through this experience. I hope you can find peace that you did everything you thought was right to do for her. Maybe your experience can help others by warning them about False Hope.
I'm sorry to say, there is no cure.
God Bless,
Big AL
If you see that be afraid. very afraid. IF there was a legitimate cure, don't you think Our Neurologists would be the first to tell us? They want to keep us alive so they can make more money off us too.
Also if you research the credintials of the site Guru you'll always find they are not medical professionals. Another words they have not been properly trained. Most would not recognize a motor neuron under a microscope. Yet they claim to be able to stop the progression of the disease.
I spoke with my neurologist about such people yesterday. She is very upset about all these websites bilking money out of people with false hope cures. There was a comment made that she thought a lot of these sites where the people claim to have ALS, MND, had never even had the disease to start with. There are some of these people claiming to have lived 18 years with als. That just doesn't happen. They are there just to take your money.
Danny look at the end result of the money spent on your Mum. What where the results. She died. So did the claims made by this web site help your Mum? I rest my case.
I'm sorry you had to go through this experience. I hope you can find peace that you did everything you thought was right to do for her. Maybe your experience can help others by warning them about False Hope.
I'm sorry to say, there is no cure.
God Bless,
Big AL
David
09-04-2006, 04:10 PM
Well said Al.
It's very sad, but there are people out there creating websites to sell false hope. The ALS Options website, the Even Better Now organisation and this Eric Edney book all have the same "schtick", to sell false hope for a very substantial profit.
It's very sad, but there are people out there creating websites to sell false hope. The ALS Options website, the Even Better Now organisation and this Eric Edney book all have the same "schtick", to sell false hope for a very substantial profit.
southern lady
09-04-2006, 09:19 PM
Danny I'm not into Eric Edney, but if it encouraged your Mom in any way, good for you in trying to help her. I don't criticize what pathways any one takes. I know of people who went to China for stem cell treatment; it didn't work, but I don't blame them for trying. I wouldn't go, but understand that desparate situations lead to difficult decisions. WE WANT TO LIVE! Also agree that most nueros aren't interested in finding a cure for us--just write us off as dead-men walking. Everything I found to help me, I researched on internet & called doc & said, "Could I try this?" Then he'd write prescription. I was angry to find some of the treatment was available since 02. (I was diagnosed in Mar 05)
You have to be your own advocate. I'm now 18 mos. past diagnosis. Have Bulbar type which can take you down in a hurry because affects speech, swallowing, breathing. Sorry about your Mom. She was blessed to have a son like you.
You have to be your own advocate. I'm now 18 mos. past diagnosis. Have Bulbar type which can take you down in a hurry because affects speech, swallowing, breathing. Sorry about your Mom. She was blessed to have a son like you.
patricia1
09-18-2006, 09:18 PM
I took glyconutrients by Even Better Now and spent over $400 dollars and all that happened was I had good bowel movments.
It was a big price to pay. I am so mad that someone would take advantage of desperate people God help them.
Thanks for listening and beware of Even Better Now And Eric Edney.
Thanks Pat
It was a big price to pay. I am so mad that someone would take advantage of desperate people God help them.
Thanks for listening and beware of Even Better Now And Eric Edney.
Thanks Pat
ladave
09-19-2006, 02:54 AM
Most PALS, when first diagnosed, will look for whatever hope they can find. If you look back to the start of this thread, you'll see I went through that phase as well.
The thing you have to understand about Edney and people who follow his regimen is that they reject Western medicine. They believe, and I think sincerely, that medical doctors simply are not able to accept alternative healing methods. And you must admit, there is some truth in this. But that's a far cry from arguing that a detoxification regimen can "cure" ALS. There is simply no evidence to support this claim.
A disease such as ALS, with no real cure, can cause people to become vulnerable to those who offer hope- even false hope. It is hard to resist the siren's song. I do it by using the common sense God gave me. Others must choose their own path. I refuse to see myself as "dying from" ALS; I see myself as "living with" ALS, the best I can each day.
The thing you have to understand about Edney and people who follow his regimen is that they reject Western medicine. They believe, and I think sincerely, that medical doctors simply are not able to accept alternative healing methods. And you must admit, there is some truth in this. But that's a far cry from arguing that a detoxification regimen can "cure" ALS. There is simply no evidence to support this claim.
A disease such as ALS, with no real cure, can cause people to become vulnerable to those who offer hope- even false hope. It is hard to resist the siren's song. I do it by using the common sense God gave me. Others must choose their own path. I refuse to see myself as "dying from" ALS; I see myself as "living with" ALS, the best I can each day.
megs
11-08-2006, 11:34 PM
My DAD was diagnosed at 63 years of age 2 years ago .....He had never lived an unhealthy lifestyle , he never drank alcohol , never smoked was a vegetarian who always watched what he ate ...he played premier league football in the UK , was a cricket player and during his mid life years kept fit by playing tennis .
After his diagnosis he purchased Erics book ...followed the programe to a T , spent thousands of $$$ detoxing himself , even shifted house to get away from the toxic polish on the floorboards .
Yesterday he was in hospital having a P.E.G inserted to feed him as he is down to only 58kgs due to choking .....he has lost complete use of his arms and his voice is now limited to a husky inaudible one word at a time rasp .
Eric is a conman .......I am angry that my Dad stopped taking the Rilutec as part of detoxifying his body ......The stress of eating organic , the clay baths and following Erics instructions I believe have destroyed this man into an undignified mess a lot sooner than should have .
Stay away from Erics book ..my advice live life for today and ENJOY IT
megan
After his diagnosis he purchased Erics book ...followed the programe to a T , spent thousands of $$$ detoxing himself , even shifted house to get away from the toxic polish on the floorboards .
Yesterday he was in hospital having a P.E.G inserted to feed him as he is down to only 58kgs due to choking .....he has lost complete use of his arms and his voice is now limited to a husky inaudible one word at a time rasp .
Eric is a conman .......I am angry that my Dad stopped taking the Rilutec as part of detoxifying his body ......The stress of eating organic , the clay baths and following Erics instructions I believe have destroyed this man into an undignified mess a lot sooner than should have .
Stay away from Erics book ..my advice live life for today and ENJOY IT
megan
Al
11-09-2006, 01:33 AM
Thanks for your input Megs. Sorry about your dad. Welcome to the forum. Hope we can be of some help. AL.
Brentt
11-25-2006, 06:11 PM
After reading back to the origin of this post I couldn't understand the sentiment against Edney and what his book was all about . I too was suspicious when I was introduced to this book ,but I approached it with caution . I wanted to hear what the man had to report on how he obtained benefit in any way . After reading the book I had noticed how my doctor had advised me of antioxidants and that they couldn't hurt me .
He gave me a list of vitamins or supplements such as the CQ 10 , vit.E ,C and B -12 injections . I had already been takeing these supplements in hopes of staving off any progression of this bastard ( als ) . So after trying the program to the best of my abilities
for about three months I seemed to at least maintain a steady level . Then I recently couldn't afford all of the extra products that they sell at their site . Now I only added the products that made cense . The protein ,the celation liquid ,cell activator and the mud. I have since to use the mud .What happened to me after I stopped taking the supplements is not what I wanted . I started having problems with the strength in my legs , neck and in my breathing . I don't know if it means anything but I still am on a very strict diet of foods free of things like msg and other preservatives . Actually all I normally eat in a day will include the formula that goes in the peg . Good water ,fruits blended with orange juice and I cheat a cup or two of coffee in the morning . The program demands purification of the body which can't be bad as long as your not robbing yourself of vital nutrients . Now I plan on going back on the supplements as soon as the holidays are over .I don't expect to reverse anything because that just doesn't seem to be realistic . Not with ALS anyhow . I don't know exactly what to look for either . But if I keep a positive attitude ,eat properly prepared healthy and free of the preservatives and pesticides foods and continue to keep my body away from all other harmful airborne contaminants , I can't see anything here that could possibly be negative on me .
I think if you follow anyone to the edge of a cliff it's up to you to decide how close to the edge you are willing to go .
Practice common sense and you'll live alot longer .
We all have a nasty ride ahead and learning about what causes this disease is the one and only way the scientists are going to be able to crush this disease .
What we can do until then is be positive and try to learn what we need to do to ourselves to slow down the progression .
He gave me a list of vitamins or supplements such as the CQ 10 , vit.E ,C and B -12 injections . I had already been takeing these supplements in hopes of staving off any progression of this bastard ( als ) . So after trying the program to the best of my abilities
for about three months I seemed to at least maintain a steady level . Then I recently couldn't afford all of the extra products that they sell at their site . Now I only added the products that made cense . The protein ,the celation liquid ,cell activator and the mud. I have since to use the mud .What happened to me after I stopped taking the supplements is not what I wanted . I started having problems with the strength in my legs , neck and in my breathing . I don't know if it means anything but I still am on a very strict diet of foods free of things like msg and other preservatives . Actually all I normally eat in a day will include the formula that goes in the peg . Good water ,fruits blended with orange juice and I cheat a cup or two of coffee in the morning . The program demands purification of the body which can't be bad as long as your not robbing yourself of vital nutrients . Now I plan on going back on the supplements as soon as the holidays are over .I don't expect to reverse anything because that just doesn't seem to be realistic . Not with ALS anyhow . I don't know exactly what to look for either . But if I keep a positive attitude ,eat properly prepared healthy and free of the preservatives and pesticides foods and continue to keep my body away from all other harmful airborne contaminants , I can't see anything here that could possibly be negative on me .
I think if you follow anyone to the edge of a cliff it's up to you to decide how close to the edge you are willing to go .
Practice common sense and you'll live alot longer .
We all have a nasty ride ahead and learning about what causes this disease is the one and only way the scientists are going to be able to crush this disease .
What we can do until then is be positive and try to learn what we need to do to ourselves to slow down the progression .
ahpeditor
02-16-2007, 02:38 PM
Everyone,
12 years ago I was told that I had gall bladder disease AND a hiatal hernia AND Barrett's Esophagus (a chronic condition, percurser to esophaheal cancer and 90% fatal if not caught early). I had my gall bladder removed and a nissan fundiplication to repair the hernia.
Less than a year after my surgery I was informed of a lawsuit against the surgeon who did my "wrap." Apparently he had made a lot of money by scaring people into having this very expensive surgery. One year later he died from a massive heart attack. (Poetic justice?) The lawsuits were dropped because he had hidden all the profits from his ill-gotten gains in his wife's and children's names.
Ten years after the surgery, I had to have a redo of the Nissan. It seems that my surgery was unnecessary. I did not have an hiatal hernia after all, but the wrap caused me some big problems. After my second surgery, I had two upper endoscopy exams that confirmed that I did NOT have Barrett's Esophagus. The total cost for me and my insurance companies was over $250K.
Last fall, my wife went to her family dr complaining of weakness in her left hand and right leg, muscle twitches and cramping at night. She sent her to a podiatrist. After an MRI, the podiatrist sent her to a neurologist, who used an EMG to diagnose moderately severe carpal tunnel in her wrists. This of course didn't do anything to relieve the complaints about twitches and her leg.
Eventually the neuro sent her to an orthopedic surgeon, his MRI (on both her neck and lower back) diagnosed a slipped disc. He suggested surgery and a second Ortho confirmed his dx. (I can only assume that they did the MRI on her upper neck to rule out anything that may be causing her problems with her left arm.) Unfortunately, neither ortho could give her any help with the twitching and cramping. All they knew was that there wasn't anything they could find. She eventually had her S1, D4, and D5 fused and started to notice improvement in her foot drop and could even move her toes again after some rehab.
One month after the surgery, she was back to another neuro who told her the twitching could be BFS, MS, or ALS. (Don't get me started on this jerk.) We asked for a referral to Mayo and their neuro confirmed that she did indeed have ALS.
So what's the point? I guess the point is that Eric and others are NOT the only ones making money off people with illnesses like ALS. A podiatrist, two neuros, and two orthopedic surgeons got a lot of money from us and our insurance company!!!! (Don't ask me how much, I haven't added it up yet.) I'm not even counting the cost of three days at Mayo.
My wife is dying from ALS. We both have come to terms with the dx and are NOT in denial (wish I could say the same for my M-I-L). My wife has read Eric Edney's book. We have paid quite a bit of money to have her amalgams and root canals removed. And we will continue to try and detoxify (yes, even with mud baths) and live our lives as healthily as possible from this point forward.
While I have no doubt that my wife will die from ALS, I will NOT take away her hope. I will spend every penny I have and we will never give up. I hesitate to say this to those of you who have ALS, but I feel you're in some form of denial yourselves. I don't know enough about detoxifying yet to say it doesn't work. I hope to someday and believe me I'm praying it does. One thing I can guarantee though is that if it does help, I will NOT come back here and gloat. I also will not ask for your sympathy when the inevitable happens.
I feel very strongly that it takes a great deal of faith to believe in the alternatives and holistic cures. Faith is the only thing we have, how dare you try to take that away from anyone? What do you have to gain? Shame on you.
And so you know that I'm not selling anything, you can call me anytime 515-418-1710. My name is Joel. I'm an editor living in Des Moines, IA. My wife's name is Lisa. Our journey is an open book. We have nothing to lose and everything to gain. Money is the least of our worries.
-Joel
12 years ago I was told that I had gall bladder disease AND a hiatal hernia AND Barrett's Esophagus (a chronic condition, percurser to esophaheal cancer and 90% fatal if not caught early). I had my gall bladder removed and a nissan fundiplication to repair the hernia.
Less than a year after my surgery I was informed of a lawsuit against the surgeon who did my "wrap." Apparently he had made a lot of money by scaring people into having this very expensive surgery. One year later he died from a massive heart attack. (Poetic justice?) The lawsuits were dropped because he had hidden all the profits from his ill-gotten gains in his wife's and children's names.
Ten years after the surgery, I had to have a redo of the Nissan. It seems that my surgery was unnecessary. I did not have an hiatal hernia after all, but the wrap caused me some big problems. After my second surgery, I had two upper endoscopy exams that confirmed that I did NOT have Barrett's Esophagus. The total cost for me and my insurance companies was over $250K.
Last fall, my wife went to her family dr complaining of weakness in her left hand and right leg, muscle twitches and cramping at night. She sent her to a podiatrist. After an MRI, the podiatrist sent her to a neurologist, who used an EMG to diagnose moderately severe carpal tunnel in her wrists. This of course didn't do anything to relieve the complaints about twitches and her leg.
Eventually the neuro sent her to an orthopedic surgeon, his MRI (on both her neck and lower back) diagnosed a slipped disc. He suggested surgery and a second Ortho confirmed his dx. (I can only assume that they did the MRI on her upper neck to rule out anything that may be causing her problems with her left arm.) Unfortunately, neither ortho could give her any help with the twitching and cramping. All they knew was that there wasn't anything they could find. She eventually had her S1, D4, and D5 fused and started to notice improvement in her foot drop and could even move her toes again after some rehab.
One month after the surgery, she was back to another neuro who told her the twitching could be BFS, MS, or ALS. (Don't get me started on this jerk.) We asked for a referral to Mayo and their neuro confirmed that she did indeed have ALS.
So what's the point? I guess the point is that Eric and others are NOT the only ones making money off people with illnesses like ALS. A podiatrist, two neuros, and two orthopedic surgeons got a lot of money from us and our insurance company!!!! (Don't ask me how much, I haven't added it up yet.) I'm not even counting the cost of three days at Mayo.
My wife is dying from ALS. We both have come to terms with the dx and are NOT in denial (wish I could say the same for my M-I-L). My wife has read Eric Edney's book. We have paid quite a bit of money to have her amalgams and root canals removed. And we will continue to try and detoxify (yes, even with mud baths) and live our lives as healthily as possible from this point forward.
While I have no doubt that my wife will die from ALS, I will NOT take away her hope. I will spend every penny I have and we will never give up. I hesitate to say this to those of you who have ALS, but I feel you're in some form of denial yourselves. I don't know enough about detoxifying yet to say it doesn't work. I hope to someday and believe me I'm praying it does. One thing I can guarantee though is that if it does help, I will NOT come back here and gloat. I also will not ask for your sympathy when the inevitable happens.
I feel very strongly that it takes a great deal of faith to believe in the alternatives and holistic cures. Faith is the only thing we have, how dare you try to take that away from anyone? What do you have to gain? Shame on you.
And so you know that I'm not selling anything, you can call me anytime 515-418-1710. My name is Joel. I'm an editor living in Des Moines, IA. My wife's name is Lisa. Our journey is an open book. We have nothing to lose and everything to gain. Money is the least of our worries.
-Joel
Al
02-16-2007, 03:16 PM
Hi Joel. I think if enough people said they were screwed on this forum by the doctors you mentioned (but not by name) I would not let them advertise here either and would slam them as well. I do not feel that I am dashing anyone's hopes by saying this guy can't advertise his overpriced and arguably worthless product here. There are a couple of other forums that allow people to promote and sell his stuff. Somebody's making a lot of money over there. I have been slammed on other forums by people banned from here for trying to sell false hope. I don't get one red cent from anyone for moderating this forum and as a matter of fact it probably costs me money. I do not begrudge that because I believe in this forum and it's values.
If detoxifying works for your wife I will be happy for you and for her but I just don't think it works. There isn't enough evidence in yet and until there is I will suspect these guys of scamming. We've had more people here complaining of being screwed than we have of being cured. Coincidence? I think not. The good thing is that we can become educated and make our own choices. I am sure you tell everyone you meet that says they are going to go to the doctors that screwed you that they will be possibly be given bad care and advice. That's the same thing we do here. Not to make them lose hope but to give them some and not false hope.
AL.
If detoxifying works for your wife I will be happy for you and for her but I just don't think it works. There isn't enough evidence in yet and until there is I will suspect these guys of scamming. We've had more people here complaining of being screwed than we have of being cured. Coincidence? I think not. The good thing is that we can become educated and make our own choices. I am sure you tell everyone you meet that says they are going to go to the doctors that screwed you that they will be possibly be given bad care and advice. That's the same thing we do here. Not to make them lose hope but to give them some and not false hope.
AL.
mlb
02-16-2007, 04:07 PM
Bravo Joel. I applaud you. You have expressed my sentiments exactly.
As for doctors? I see the modern version of the hypocratic oath is now the "hypocritical" oath. I am going to write a book one day... it will probably cover several volumes.
"We have nothing to lose and everything to gain" quite right. Hope things go well for Lisa and you.
Anna
As for doctors? I see the modern version of the hypocratic oath is now the "hypocritical" oath. I am going to write a book one day... it will probably cover several volumes.
"We have nothing to lose and everything to gain" quite right. Hope things go well for Lisa and you.
Anna
ahpeditor
02-16-2007, 04:12 PM
Al,
I re-read my post and I don't see anywhere that I made the claim that online ads (as "cures" for PALS) were a good option. Please read it again. I'm convinced that most of you don't know any more about holistic medicine than I do, but you state things as if yours is the final word. Just as there is no proof that detoxifying works, I've seen no proof that it doesn't. Everyone is worried only about money. Is it possible that ALS researchers don't see any opportunities for BIG profits from finding a cure and so they aren't trying very hard? My gawd, 5000 new cases a year, where's the chance for making money from that few people? In fact, I'd say that's a fairly safe argument that these supposed scammers aren't exactly getting rich either.
I want to make clear that my wife and I did not hear about Eric Edney or Hal Huggins from any website. My wife's cousin, who is an opthamologist, contacted us after he heard of my wife's dx. He suffered a heart attack and two bypass surgeries and turned to holistic healing because he didn't feel that his doctor's were interested in preventing him from becoming sick, only in treating his illness.
Gawd, how cynical is that????? No MD is going to make any MONEY if we aren't sick. They don't give a whit about good health -- only sickness.
Hal Huggins was a licensed Doctor of Dentistry. I say "was" because his license was taken away because he refused to toe the ADA line. The ADA refuses to let dentists remove amalgams for ANY reasons other than cosmetic. Insurance companies will NOT pay claims for amalgam removal for medical reasons. But, they will for cosmetic reasons. What does that tell you about GREED? They stand to LOSE billions if they ever admit that putting mercury in your mouth is dangerous. BTW, just because dentists (and MD's) don't advertise on the web does not mean they're legitimate.
Drug company's are making BILLIONS advertising erectile dysfuntion meds everywhere....on the web, in every magazine you buy, on TV....over and over and over. You ever used Viagra? Or Cialas?
Finally, I don't understand how anyone would endorse DavidGL's rant claiming Eric should "give away" his book. Jeesh, talk about ridiculous. Let's face it....money makes the world go round. Eric isn't giving anything away, and neither would DavidGL, nor any MD that I know of. Our first neuro's shoes cost more than my entire wardrobe.
-Joel
I re-read my post and I don't see anywhere that I made the claim that online ads (as "cures" for PALS) were a good option. Please read it again. I'm convinced that most of you don't know any more about holistic medicine than I do, but you state things as if yours is the final word. Just as there is no proof that detoxifying works, I've seen no proof that it doesn't. Everyone is worried only about money. Is it possible that ALS researchers don't see any opportunities for BIG profits from finding a cure and so they aren't trying very hard? My gawd, 5000 new cases a year, where's the chance for making money from that few people? In fact, I'd say that's a fairly safe argument that these supposed scammers aren't exactly getting rich either.
I want to make clear that my wife and I did not hear about Eric Edney or Hal Huggins from any website. My wife's cousin, who is an opthamologist, contacted us after he heard of my wife's dx. He suffered a heart attack and two bypass surgeries and turned to holistic healing because he didn't feel that his doctor's were interested in preventing him from becoming sick, only in treating his illness.
Gawd, how cynical is that????? No MD is going to make any MONEY if we aren't sick. They don't give a whit about good health -- only sickness.
Hal Huggins was a licensed Doctor of Dentistry. I say "was" because his license was taken away because he refused to toe the ADA line. The ADA refuses to let dentists remove amalgams for ANY reasons other than cosmetic. Insurance companies will NOT pay claims for amalgam removal for medical reasons. But, they will for cosmetic reasons. What does that tell you about GREED? They stand to LOSE billions if they ever admit that putting mercury in your mouth is dangerous. BTW, just because dentists (and MD's) don't advertise on the web does not mean they're legitimate.
Drug company's are making BILLIONS advertising erectile dysfuntion meds everywhere....on the web, in every magazine you buy, on TV....over and over and over. You ever used Viagra? Or Cialas?
Finally, I don't understand how anyone would endorse DavidGL's rant claiming Eric should "give away" his book. Jeesh, talk about ridiculous. Let's face it....money makes the world go round. Eric isn't giving anything away, and neither would DavidGL, nor any MD that I know of. Our first neuro's shoes cost more than my entire wardrobe.
-Joel
Al
02-16-2007, 04:51 PM
Joel. I will agree that most of us don't know much about holistic medicine and I will defer to you knowing more about it than I do. There are people that know a lot more about traditional medicine than I do. I did not want to get into a lengthy dissertation about the merits of each but I will agree there is room for improvement in both areas. Nobody is going to give anything away for nothing and to ask is unrealistic. Charging the prices they charge for these supplements is terrible as is the price for mainstream drugs. You said that money is not a concern for you. That's great for you that you can spend endless amounts of money chasing what may or may not be a dream but what about the single mom with 3 kids with ALS that can't afford that? At least she can get medicare. Maybe it's not fair that they won't pay for supplements but until they get lobbyists and show real results then they will be labelled as to what they are. It's not all our fault or the big drug companies as they like to say. They're making big bucks and not putting anything into it other than pyramid sales and fancy websites. Just my opinion. Different people have different opinions. Thank God we live in countries where we can express them without fear of persecution.
AL.
AL.
hboyajian
02-17-2007, 01:22 AM
I believe David made some very good points. Apheditor, I do not feel comfortable with your accusations of "ranting". I would like to hear your opinions, and I agree with some of them, without hearing put downs of other people here. We all come here for a place to express ourselves, and to hear what other people think in an open exchange.
It is my belief that there are in fact people who give to the world without direct monetary gain, even people in the medical field. When I had a back injury, I got exercises that helped me tremendously from a physical therapist who posted all his exercises for my specific problem and even gave instructions on how to do them correctly through a forum similar to this one. He never asked me for a cent, and I attribute my recovery to his help.
Al, you are a fabulous moderator, and I deeply appreciate all the time and effort you put in to make this forum helpful to so many people. I f you feel this post is not appropriate for any reason, please take it out or edit it. I am going to visit my mom tomorrow and won't be around for a few days. Thank you.
It is my belief that there are in fact people who give to the world without direct monetary gain, even people in the medical field. When I had a back injury, I got exercises that helped me tremendously from a physical therapist who posted all his exercises for my specific problem and even gave instructions on how to do them correctly through a forum similar to this one. He never asked me for a cent, and I attribute my recovery to his help.
Al, you are a fabulous moderator, and I deeply appreciate all the time and effort you put in to make this forum helpful to so many people. I f you feel this post is not appropriate for any reason, please take it out or edit it. I am going to visit my mom tomorrow and won't be around for a few days. Thank you.
Al
02-17-2007, 01:42 AM
Thanks for the vote of support and as my dear departed mother used to say. You can't please all of the people all of the time.
AL.
AL.
patricia1
02-17-2007, 11:55 AM
joel you are very angry that your wife is sick and i dont blame you. but we are all looking for the magic cure and some of us have been taken by scam I included and we try to help others from future scams. I have als since 99 and my husband wants me to go to china for a cure Italy for a cure,but i think with my head not my heart as he does and I need facts and I havent seen anything promising yet.and rest asure if ther is one I will share it with the world Pat
ltr
02-17-2007, 12:17 PM
Al, you hit the nail on the head. I happen to be a single mother with 3 kids. I quit my mediocre job and spent our savings to go back to college, not only to better myself, but so my kids could have more. No just more belongings, but more from life. I wanted to take them places, live in a better part of town, educate them. I am sometimes hurt, sometimes jealous (I know that is a very bad emotion and I feel guilty for having it) when I read and hear of others who have treatment and equipment that I know I will never have.
It's funny, when I was crying the other day I said if I were wealthy I would be diagnosed by now. I guess I am trying to say that it would be nice if we all could just pay to try all the different options, seeing as they couldn't cause further harm. The first thing I would do with the money, seeing as my kids had all they needed, is tests that my doctor won't order, like metals, etc. I wouldn't head right to the cure all's.
Anyway, Al I also think you are a wonderful moderator and adviser. You are truly a successful, caring individual and the world is lucky to have you. Many people just think poor, single mothers put themselves there and "oh well", but you understand we are all people with the same emotions and needs. Thanks. Leslie
It's funny, when I was crying the other day I said if I were wealthy I would be diagnosed by now. I guess I am trying to say that it would be nice if we all could just pay to try all the different options, seeing as they couldn't cause further harm. The first thing I would do with the money, seeing as my kids had all they needed, is tests that my doctor won't order, like metals, etc. I wouldn't head right to the cure all's.
Anyway, Al I also think you are a wonderful moderator and adviser. You are truly a successful, caring individual and the world is lucky to have you. Many people just think poor, single mothers put themselves there and "oh well", but you understand we are all people with the same emotions and needs. Thanks. Leslie
mlb
02-17-2007, 02:37 PM
I think we've gone off the rails here a bit. The idea really is to keep abreast of alternatives, ask around before trying anything, RESEARCH, USE COMMON SENSE and LOGIC - then, make your choice INTELLIGENTLY...
Money/greed/profit have always been around and there will always be some who get caught or burnt. It is up to the individual to choose. With all the warnings about Chinese stem cell operations, there are still PALS who go to China. You cannot prevent anyone from doing what it is THEY WANT to do fo their health. No amount of editing/deleting urls will stop anyone who is determined. IT IS UP TO THE INDIVIDUAL.
Let's keep a broad open perspective on things and before dismissing them, it might be a good idea to assess their value and safety, discuss them, etc... so that everyone benefits.:-|
Money/greed/profit have always been around and there will always be some who get caught or burnt. It is up to the individual to choose. With all the warnings about Chinese stem cell operations, there are still PALS who go to China. You cannot prevent anyone from doing what it is THEY WANT to do fo their health. No amount of editing/deleting urls will stop anyone who is determined. IT IS UP TO THE INDIVIDUAL.
Let's keep a broad open perspective on things and before dismissing them, it might be a good idea to assess their value and safety, discuss them, etc... so that everyone benefits.:-|
Al
02-17-2007, 04:55 PM
I think this is rapidly becoming a dead subject. If anyone cares to do a search these forums have been going since 2003 and there are a lot of posts about Edney,mostly negative. I have been around since then but not posting until 2004. I have been a member of Patients like me, Braintalk, Yahoo Living with ALS and have done a lot of other research and have read every single post on this forum since becoming a member. I didn't say Edney is a scammer without having a bit of knowledge to back it up. Let's just say that David the Administrator and I have our ideas about what is right and wrong and over the last few years we have seen some things that are just plain wrong and if we can protect someone from being taken advantage of by taking out a url well then we will. If someone wants to go somewhere else and be taken advantage of I have no control over it but here I do. We have over 1600 members and 99.9% are happy so that's the way it shall stay.
AL.
AL.
edna may
02-17-2007, 11:13 PM
Way to go Al, I have only been a member for a short while. but I find you to be a common sense person with much research info. I trust your instincts completely. EM
CindyM
02-19-2007, 10:15 AM
Good point, Al. If we want to go to the other sites and look for alternative therapies then we're free to do so. If anyone becomes cured from an alternate therapy then they can come back and say "I told you so." By the way, I use some herbal therapies myself for things like hot flashes and joint aches so I'm not completely in the traditional camp.
rcharlton
02-19-2007, 02:03 PM
I know we are flogging a dead horse here – but here are my 2 cents:
In addition to Eric’s recommendation of a number of dubious treatments and products, one of the things that causes me the greatest alarm is that he omits any reference to a number of long time ALS survivors who have not bought into this whole detox theory (some of whom are members here).
It astounds me that Eric makes no mention of Stephen Hawking – probably the most famous surviving PALS. Stephen has had ALS far longer than Eric has – but no mention is made of him. Is it perhaps because Hawking does not subscribe to any of this detox stuff and does not help the sale of alternative therapies?
Clearly the rate of progression among PALS is not consistent. Some PALS progress very rapidly while others much more slowly; however, Eric does not delve into this at all – which I believe totally undermines his credibility.
Isn't Eric just a slow progressor?
Eric often mentions occasional relapses – which he ascribes to new toxins in his environment – or unidentified toxins still to be eliminated. Aren’t these relapses simply the ordinary progression of his ALS and that nothing he is doing is really making any difference (except helping to defraud other PALS out of their money)?
In addition to Eric’s recommendation of a number of dubious treatments and products, one of the things that causes me the greatest alarm is that he omits any reference to a number of long time ALS survivors who have not bought into this whole detox theory (some of whom are members here).
It astounds me that Eric makes no mention of Stephen Hawking – probably the most famous surviving PALS. Stephen has had ALS far longer than Eric has – but no mention is made of him. Is it perhaps because Hawking does not subscribe to any of this detox stuff and does not help the sale of alternative therapies?
Clearly the rate of progression among PALS is not consistent. Some PALS progress very rapidly while others much more slowly; however, Eric does not delve into this at all – which I believe totally undermines his credibility.
Isn't Eric just a slow progressor?
Eric often mentions occasional relapses – which he ascribes to new toxins in his environment – or unidentified toxins still to be eliminated. Aren’t these relapses simply the ordinary progression of his ALS and that nothing he is doing is really making any difference (except helping to defraud other PALS out of their money)?
cambo
02-21-2007, 04:55 AM
i just joined a few minutes ago and want to say thanks!!! i visited a friend of mine today that i had not seen for 6 months or more and learned that he was diagnosed in nov. 06 with als. he is progressing at a very rapid rate. he is wheelchair bound, and can not speak already, that is only 4 months!! i have found this to be a very hard day, i was shocked at how emotionally beat up i am. he is less than 40, married, 2 young kids, last i saw him he was going bike riding with the family.
i came home tonight and sat at the computer with the hopes of learning about his disease and found the story of eric, i was encouraged ( just what they want!) i even thought about ordering his book.
i am going to try and collect enough $ to send him and his family to disney land while he can still run his chair and type on his computer about the fun and rides his kids are having with mom and dad. money better spent than on erics book or products!!! cam
i came home tonight and sat at the computer with the hopes of learning about his disease and found the story of eric, i was encouraged ( just what they want!) i even thought about ordering his book.
i am going to try and collect enough $ to send him and his family to disney land while he can still run his chair and type on his computer about the fun and rides his kids are having with mom and dad. money better spent than on erics book or products!!! cam
MtPockets
02-21-2007, 09:37 AM
I totally support David and AL's attitude about this site and it's purpose. Great job guys. I know you have to deal with all different kinds of "attitudes" every day and I also know it can take a lot out of you. God bless you both for the helpful service and guidance you are providing.
I totally agree with Cambo. I would much rather spend what little bit of money I have enjoying the time I have left with my family, instead of chasing rainbows, and you know I love rainbows.
I will never use a product without intense investigation on the internet. I made a serious mistake about a suppose to be air cleaner product awhile back because a "friend" was selling the product. I used it for a period of maybe 4 months when I was put in the hospital for 9 days due to serious breathing and lung problems. After returning home I went on the internet to a neutral site about allergies and air cleaners and found out this machine was putting ozone into my house at 50 times the allowable limits for an ozone alert for the community.
I was poisoning myself with Ozone, just because I accepted something as fact because it was from a trusted friend, without checking out the item myself. The website I went to listed ozone as a potential poison and warned people about air cleaners emitting this element as dangerous to your health.
We can learn from others mistakes and their lost money for nothing in return, or we can learn the hard way. Your choice to make, it does not matter to me which way you choose. Best of luck to you either way.
By the way, a definition of "faith" is believing in something you cannot see? What do you have "Faith" in? Maybe a better word would be confidence?
God Bless
Capt AL
I totally agree with Cambo. I would much rather spend what little bit of money I have enjoying the time I have left with my family, instead of chasing rainbows, and you know I love rainbows.
I will never use a product without intense investigation on the internet. I made a serious mistake about a suppose to be air cleaner product awhile back because a "friend" was selling the product. I used it for a period of maybe 4 months when I was put in the hospital for 9 days due to serious breathing and lung problems. After returning home I went on the internet to a neutral site about allergies and air cleaners and found out this machine was putting ozone into my house at 50 times the allowable limits for an ozone alert for the community.
I was poisoning myself with Ozone, just because I accepted something as fact because it was from a trusted friend, without checking out the item myself. The website I went to listed ozone as a potential poison and warned people about air cleaners emitting this element as dangerous to your health.
We can learn from others mistakes and their lost money for nothing in return, or we can learn the hard way. Your choice to make, it does not matter to me which way you choose. Best of luck to you either way.
By the way, a definition of "faith" is believing in something you cannot see? What do you have "Faith" in? Maybe a better word would be confidence?
God Bless
Capt AL
Al
02-21-2007, 10:12 AM
Welcome Cambo. People with ALS or any disease need friends like you. Your friend is lucky.
AL.
AL.
Guest123
12-22-2007, 09:46 PM
This forum has become such an important place of support for me that I feel it necessary to come back on and respond to the above, just to say that I'm not one of "those people" referred to in the above comments. I would shudder to think that people here would stop resonding to me and interacting with me because they thought I just came here to build up some "points" so I could then shill for some product or other.
For the record, if you look back, my comment about clay baths was partof a much longer post I made in response to a request another forum member made about what I was doing. That post contained the caveat that I had no idea if any of these things were actually helping me and that I was not recommending them for anybody else; simply that these seemed to be the things that made the most sense to me to try.
And that, I hope, will be the end of this discussion for me:)
I found this thread while doing a search for researched evidence of fake testimonials. My brother is an undiagnosed hypochondriac(what is referred to sometimes as "medical student syndrome"), and constantly sends me links for various "alternative remedies" to imaginary ailments and deficiencies. I argue the honesty of these sites, and he refers to the "testimonials". Of course, I told him I could make a thousand testimonials every day and sign them "John G. from Fort Lee" or whatever, and it would not make the testimonial any more true. His response, like that of "ladyave", is that some of these are generic testimonials, in that one could go and buy a clay foot bath or a bottle of hawthorn berry capsules from any other source. Not realizing, of course, that it makes no difference since if you are inclined to believe these fake testimonials anyhow, you will purchase it from somewhere, and everyone in the business benefits. People need to educate themselves on the value of these anonymous testimonials(zero), and stop throwing their money away to charlatans who are simply and ruthlessly exploiting people in need of hope.
For the record, if you look back, my comment about clay baths was partof a much longer post I made in response to a request another forum member made about what I was doing. That post contained the caveat that I had no idea if any of these things were actually helping me and that I was not recommending them for anybody else; simply that these seemed to be the things that made the most sense to me to try.
And that, I hope, will be the end of this discussion for me:)
I found this thread while doing a search for researched evidence of fake testimonials. My brother is an undiagnosed hypochondriac(what is referred to sometimes as "medical student syndrome"), and constantly sends me links for various "alternative remedies" to imaginary ailments and deficiencies. I argue the honesty of these sites, and he refers to the "testimonials". Of course, I told him I could make a thousand testimonials every day and sign them "John G. from Fort Lee" or whatever, and it would not make the testimonial any more true. His response, like that of "ladyave", is that some of these are generic testimonials, in that one could go and buy a clay foot bath or a bottle of hawthorn berry capsules from any other source. Not realizing, of course, that it makes no difference since if you are inclined to believe these fake testimonials anyhow, you will purchase it from somewhere, and everyone in the business benefits. People need to educate themselves on the value of these anonymous testimonials(zero), and stop throwing their money away to charlatans who are simply and ruthlessly exploiting people in need of hope.
jimmig
06-18-2008, 12:57 PM
The more info i read. The more enraged i get. The people out there trying to put one over on us is the most ignorant act on the planet. The younger jim tended to shot first,
take another shot or two, then maybe ask a question. I'm sooooo pissed that pals are being targeted for the lowest kind of behavior. The younger minded jim is returning.
these a------s need some retribution. If anyone has watch the movie "SNATCH"?
THE PIG FARMER HAS THE RIGHT IDEA.
an enraged jimmig!!!
take another shot or two, then maybe ask a question. I'm sooooo pissed that pals are being targeted for the lowest kind of behavior. The younger minded jim is returning.
these a------s need some retribution. If anyone has watch the movie "SNATCH"?
THE PIG FARMER HAS THE RIGHT IDEA.
an enraged jimmig!!!
patricia1
06-18-2008, 02:29 PM
They got me with Gyconutrient but I got them and the company is being investigated
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