RCH4 Drug stopped by Dr. Bedlack

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uheintz

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I must protest at some comments here. My decline was 1.3 ALSFR points per month over 2 years. Since starting this drug I am stable. My decline has completely stopped. Due to untrue SCAM headlines, my drug supply will end due to lack of funding.

A moderator comment: this post belongs in Rants since it is entirely opinion rather than fact but in the interests of continuity from the original thread and Eric's responses in Research News, we'll leave it here.

This is no rant. In fact this breaking news is likely to be the biggest scandal in the history of ALS treatment.
ALS Untangled Dr. Bedlack knows its no scam, was asked to say so and refused, causing the collapse of the charities funding. He has much to answer for.

Secondly, a regular-person comment --....... The more serious issue, I think, would be -- did ALSU's attempt to "investigate" RCH4 result in any facts worth grabbing on to? Sadly, no.

Carefully read their website - it tells you why.
I get it free, it works and why should I ask questions.

And the bit about having to close up shop due to Eric's posts is just wonky.

Laurie, would you give money to a charity when you put RCH4 into Google and the word SCAM appears?
No, you would not.

First, if the funders believed, they believed. Blog posts (not to mention scholarly publications) critiquing development programs by implication are as easy to find as dust, so if every program that got zinged closed up, we'd have no therapies.

Good point. You are right. Now we have one less. Tragically, the only one that worked.

Second, if a neuro freaked out and withdrew "consent" for his patient to be in the RCH4 "trial,"

Laurie, nobody said it was a trial. The data charts show no placebo group.

most patients know how to use a phone book, metaphorically, write a check and find a neuro willing to sign a form. And honestly, it'd be a poor neuro who wouldn't find in 5 seconds w/ Google that Eric is a PALS and not a professional scientist.

Neuros dont read this rubbish. Too busy.
They just Google RCH4 and that's it. SCAM.
End of further interest.

I will say, calling on Dr. Bedlack to do anything at this point seems rather silly,

Silly? The man was provided with proof that it is no scam and refused to speak out to save the charity. He`s a disgrace.

but in particular, he can't disown Eric because Eric continues to work with ALSU,

Another good point. One more reason why this is a scandal. He is protecting his friend Valor.
People are waking up to the truth about ALSU. How many more of their drug investigators are arrogant, self-opinionated and have no qualifications in either medicine or science?

and likewise Dr. Bedlack can't "state" anything isn't a scam that he hasn't investigated from a scientific perspective,

Laurie, that's nonsence. He has proof its not a scam. He has a moral obligation to say so. Nothing whatever to do with science.

nor does that brand of analysis entail guesses as to motives and honesty, and the secrecy factor seems to have rather prevented a full scientific assessment since I haven't seen one.

I was not aware that you are qualified to evaluate scientific assessments and statistics. Nice to know.
Bedlack is wrong if he thinks he has a right to investigate anything not in the public domain.

Their website says its privately funded so the data is private property. They were entitled to say nothing. How much money have the members of ALSU put into ALS from their own pockets?
I dont care about secrecy. Someone was paying for my treatment. It has stabilised me when nothing else can. If people wanted to know if it worked they could have just asked for it and found out for themselves.

But if the page you linked to is correct and "confidential" data were disclosed, would it not be in the dosed patients' interests to ask that they be released so as to call off the hunters, and the therapy program re-instituted?

No. I will not ask for my data to be released. Not in my interest. I am under a secrecy agreement.
Apart from that, your hunters SCAM allegations collapsed the funding.
Restart? Where is the money to come from?

And if the named entity in the NDA is no longer operational, that may be an out-clause anyway.

So, Mich, if you want to benefit the cause and really think there is something to RCH4, persuading its sponsors to come back out of the closet and collaborate with the witch hunt (hard to maintain in the face of full transparency these days) seems like the most constructive course of action.

The most constructive course of action is to ask Bedlack to explain himself.

Either way, we're not going to re-litigate what we did in April.

Laurie you may be wrong. This scandal of Bedlack keeping a secret thus causing the end of a drug that worked will explode.
I and others are extremely angry and we want answers why malicious people took away the one drug which worked.
We all now have views about Bedlack and Valor. Who can blame us?

Udo
 

notBrad

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I think the facts do prove that Eric was, and is wrong in painting the group as a scam. His continuing to do so smacks of vindictiveness. I can't fathom why Dr Bedlack refuses to acknowledge the data regarding the efficacy of the drug. One more thing I noticed is that the RC group doesn't ask for money but Eric's site is monetized, one would have to assume that the more sensational blog entries would generate more page views. Sort of like "if it bleeds it leads".
 

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I'm very confused.

The people making this RCH4 DO ASK FOR MONEY and obviously in a very big way.

You guys are saying that they now can't get investors, and it seems that a lot of money was needed.

I had the definite impression last thread that the people doing this were paying for it all and this was why they could only take on a few. Instead they were getting big bucks from somewhere and this is drying up.

I can't answer all the whats and whys of what is going on, but Dr Bedlack's reputation is without dispute until now, and I would totally believe that if he is keeping his mouth shut he has a reason. I know Bedlack has helped thousands of PALS and still is, while the RCH4 people seem to have taken money from investors from somewhere and helped a handful. You have to ask WHY would Bedlack want to stand in the way of a true cure/treatment? That just does not make sense, and personally attacking him is now getting ugly beyond belief. (the website screams it out)

I am incredibly dismayed that this whole debate is so vehement.

If people wanted to know if it worked they could have just asked for it and found out for themselves.
My understanding was that they only took a tiny, limited number of PALS, so if several thousand PALS had suddenly said yes please, they were going to be knocked back from well before there was any suggestion of it being a scam.

I am not saying anything about the efficacy of RCH4 as I know nothing about it.

I will say that a group of people that are getting a lot of money invested in their cause, and swearing everyone to secrecy, and keeping the group a tiny little lucky minority when hundreds of thousands are dying of this disease every single year, are in my book hiding something.

All I know is that the whole thing smells totally off and the RCH4 people are never going to come clean, but they are going to go out by trying to smear Bedlack on their way out.
 

kenschatz

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Nikki, I found them because I posted that anyone currently taking the drug please contact me. Then s couple of them invited someone they knew. No predisposition other than that.
I didn't consider it brave, although my Dr was concerned, but I was dying anyway, if this could slow it great. I stepped up to bi monthly blood tests, my blood pressure has gone down, I've gained weight, my blood sugar is normal.
The end result was and is to eventually bring this to market. Which would obviously cost tens of millions of dollars and years of testing for approval. Meanwhile those that took the leap of faith seem to have been rewarded. Somehow I thought we would be given some type of compassionate use while this was being segued in that direction. Now it seems we too must attempt to live long enough for that to happen without the drug.
 

kenschatz

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Bedlack might be collateral damage based on his stance. He was not asked to say it worked - how could he? Just to say it did not in his opinion seem like a scam. He was given info to show this fact. None of use has paid a dime ever. This treatment is not going to go away- I just wanted to be around to see it hit the market.
 

affected

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I don't believe Bedlack however is allowed to publish any detail of information he was given - was he also sworn to secrecy?

If he says nothing, maybe it's because he cannot honestly say there is no scam. Now I'm not putting words in his mouth, I'm just saying that it is being said it has been proven to him it is not, but he is not saying that publicly. He is a pretty smart guy and his heart in helping PALS in traditional and non-traditional ways, and in finding a cure, has been known world-wide for years.

I doubt he will ever endorse anything because they have now smeared him, so that's probably slammed the door shut for good.

I have no personal connection to this drug, and no knowledge of it - the secrecy has ensured that.

THIS is printed on their official website, and I'm sorry but this is totally untrue if they are now saying that they can't get funding from wherever because Eric said it is a scam.

Due to lack of any external source of funding we must pay the cost ourselves as a charitable undertaking, therefore the number of patients we can afford to treat is very limited. Accordingly we avoid publicity or recognition. From time to time when we can afford to treat more PALS, we publish a temporary web site inviting those who may be interested to apply for help.

THEY ARE NOT FUNDING THE COST THEMSELVES.

This is from the 'official' website as first printed in the first thread started on this topic.

This is the site: http://www.als-new-drug.com/
 

Nuts

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I'm very sorry for people who feel they've been helped and are now being cut off, but I hate the smear campaign directed at such a wonderful and compassionate man as d r Bedlack.

I don't see how secrecy will ever bring this or any product to market. I am also very troubled by the tone of the people striking out at DB. The death threat against Eric was enough to convince me that something is very wrong.

If the people backing this product believed in it and if they are anonymous, why pull support if everything is above board?

I can understand someone who feels they've been helped being distraught, and I hope they are not being manipulated in some way to bring attention to this drug. Unfortunately, I am a skeptic and suspicious of the kind of secrecy and threatening behavior that surrounds this group.

Personally, I'd be interested in knowing exactly who was offered this information and showed no interest. Names, folks. Vague claims that it was presented and rejected without specifics just don't give me any warm fuzzys.
 

GregK

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Death threat?
 

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Nuts can you enlighten us on the death threats, I did not know that one???
 

Nikki J

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There was a veiled threat made here ( deleted). I believe there was a more obvious threat on Eric's blog ( also deleted). Becky can correct me if I misremembered. The person is NOT anyone who is currently posting on this thread. As far as I know this person ( a PALS) had no connection with the suppliers except as a possible user of their therapy
 

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Thanks Nikki, it's important to separate out who is saying or doing what as it's already a very cloudy situation.
 

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Nikki, you are right, the threat was made on Eric's blog and has recently been removed, and it don't believe that person posts here.
 

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ALSTDI can get ugly ...
 

Nikki J

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None of it happened on tdi Greg. There was something here and on Eric's blog
 

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This whole thread makes me very sad. I am not a patient of Dr. Bedlack's but I've e-mailed him with a question on copper and lunasin and he answered me within a few hours. He also read The ALS Awareness Project and told me he thought it was a good piece. He really cares about PALS.

Have any of you PALS who have had success with this drug e-mailed Dr. Bedlack and given him a detailed account of your progression slowdown or stop?

The only way Bedlack would not pursue something that has a possibility of curing or stopping progression is if there were a legal issue in doing so or he knew something he is not at liberty to say.

If I were taking the drug and receiving a benefit from it, I would e-mail him. Actually, I live just a few states away.....I would probably fly up there and see him.

I really didn't understand Eric's blog entries regarding this drug. I thought they were unusually harsh. I don't know what really happened between the company and Eric.
 
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