uheintz
Member
- Joined
- Oct 31, 2014
- Messages
- 15
- Reason
- PALS
- Diagnosis
- 03/2014
- Country
- GER
- State
- Bavaria
- City
- Augsburg
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
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