Unapproved ALS Drug

[affected]

I'm not the least bit involved in any way, as a past CALS.

But my thought is that it would be wonderful if ALSU can study this and vouch for it if there is merit to it, so being a part of their study to show it has value would be a good thing.

Just my thought, I'm just interested because I hope there is a cure coming, and have no idea where it will surface from!

 

[*ENV*]

I invite you all to read Dr. Bedlack's comment on my blog post. The rest of thread should also be informative.
ALS-New-Drug: New-Scam? - EricValor.org

 

[notBrad]

More interesting to me is the post by the RC Group. Your initial post seems to cross the line from skepticism to bias based on all I've read. I say this with no disrespect intended, but in discovery all are best served by an open mind only drawing conclusions that the data support.

 

[affected]

I may be wrong, ENV please correct me if I am.

But ENV is collecting and collating data. He is not evaluating and making the decisions on the data. So unless his bias were to make him hide, throw away or fabricate data, any bias he has is his business?

Every scientist, researcher and inventor have some bias as they start any new pursuit.

I do agree that ENV has put his views out there early and maybe that has not assisted people rushing to work with him. I would sincerely hope that if this drug is working, people would rush to tell him just to prove him wrong.

We have a few PALS taking it here, one has said 'I know it is effective.'
I read that and my heart leapt, and then I heard nothing more to give details of just what that means.

I must say that sadly I've seen PALS say they are taking this or that regime and swear by it, and I say goodbye as they pass away. We never know if they would have been slow progression anyway. I guess things look a little different when you have been watching this disease for some years and over a range of people.

 

[ShiftKicker]

I am following this thread, and the one on TDi as well- and have been since I first saw a post about it. I am REALLY interested in the drug and possible results. While I understand there are many factors involved, including politics, legal/liability issues and possible future commercial interests, the way it has been set up does cause skepticism for me. If there is any proven reversal or arrest of a terminal disease, there is an absolute ethical responsibility for these medical experts, if they are driven to help those with ALS as stated, to publish their results.

The secrecy rings alarm bells for me and doesn't quite sit right- what is being hidden? Why? While I have concerns, I sincerely hope something wonderful comes from it and if even one person gains ability, or arrests progression even for a little while, I would celebrate it.

 

[notBrad]

He is the lead investigator and as such has a duty to provide an objective examination of the facts. He even says so on his blog - "I was asked to take the lead in helping ALSUntangled gather objective information about RCH4", but in fact he did anything but.

I agree with your observation about bias being present in any undertaking but would add that those who are professional and good at their jobs put their bias aside.

But all of this moot since they are no longer accepting patients.

 

[affected]

But all of this moot since they are no longer accepting patients.

Brad, the organisation providing RCH4 are not continuing?

 

[*ENV*]

I made my blog post based on the paucity of information available on the website. I then talked with Dr. Bedlack about it, where he asked me to take the lead in the ALSUntangled investigation. Again, this was AFTER my post, which was based on my own decades of experience with scam sites of various flavors (this was my career before I was diagnosed) and my decade of experience with ALS pharmaceutical scams in particular. I stand by my initial evaluation based on the information made available to date by the RCH4 group.

However, I would be delighted to be proven wrong. That's where the ALSUntangled investigation comes in, conducted via our published SOPs. I am trying to gather the information necessary to make a report to the ALSUntangled group, where each member has the opportunity to weigh in with commentary and suggestions. The reports are edited multiple times before publication. And anyone is free to see the ALSUntangled members at the bottom of every published report.

So yes, I made an initial conclusion based on the information available. Now I want to test that conclusion by systematically gathering more data. That's how science works. But without your help and the help of the RCH4 people, no new information would be available for consideration.

 

[GregK]

You shouldn't have dis'd their website, Eric. That pissed them off ... ;^)

In spite of that, enough folks have vouched for you that your bona fides have been established.
I hope our PALS here work with you as i'm interested, too.

 

[notBrad]

Brad, the organisation providing RCH4 are not continuing?

According to the site they are no longer accepting new patients.

 

[*ENV*]

Yeah that was probably not the best move (although at the time I didn't know I would be investigating for ALSUntangled). I have battled spam and such for years and became quite good at spotting suspicious stuff. After diagnosis switched my attention and study to medical claims about ALS. I was alerted to this by a CALS who frequently asks me to check stuff out and everything about it sounded alarm bells. However, I would indeed love to be proven wrong.

 

[Atsugi]

For what it's worth, I've looked at Eric's reputation in various media accounts and found him to be a great advocate for PALS. I don't understand why anyone wouldn't cooperate with him.

 

[lgelb]

All due respect, Eric, you know I value your work, but since you had already declared yourself rather emphatically, ALS-U should've found another investigator.

As you saw in this thread, I put a little effort into looking at the science, wasn't kind about the operational side, but still ended with "I don't know." Despite the semi-secret group's shrill and shallow response to your post, I still don't. Sometimes bad or inept people stumble into good science, as I know from both the academic and commercial sides of my past. Sometimes better people are able to run with it if there is something to run with; other times, the bad/inept can't let go.

This sequence of events fuels the "Establishment vs. patients" dichotomy that I'm sure most of us would like to transcend, for the sake of just that, scientific progress.

Best,
Laurie

 

[notBrad]

Laurie's approach is the one you should have taken Eric. The other issue is that your blog post flat out ignores several statements on the site in it's rush to create a sensationalist tone.

For example;
1. There's ample info on how the drug works (without going into trade secret or patentable detail).
2. There's numerous statements about drug being free.
3. There are no claims of efficacy.
4. There's no guarantee of no side effects.
5. The site says they prioritize fulfilling existing patients needs so closing admittance to new patients on occasion would be expected.

The above has been echoed on your blog and in the alstdi forum by others (Dr. OG) as well.

For myself I will offer the following;
1. My ALSFRS-R monthly decline was established at 1.33 per month over the 9 months following confirmed diagnosis.
2. It is now 0.33 per month.
3. I have had no side effects.
4. I have not been asked to, and have not paid, any money.

I also have anecdotal comments;
1. I've regained movement in a dead thumb.
2. People have remarked that my gait has improved.
3. Swallowing has improved.
4. Weight is easier to keep on.
5. Speech initially improved a lot but has declined since back to pre-drug levels.
6. Fast twitch muscle response has improved (have avoided several falls by catching myself).

BTW, I have not received any money or inducement to voice my opinions.

As mentioned by others you should recuse yourself from the investigation given your obvious bias.

Take care (and I do really mean that),
Brad

 

[affected]

notBrad thanks for telling us what is happening with you.

May I ask, this is for my own interest - I know you say they make no claims of efficacy, but may I ask did they put this across to you as a possible cure, or something more like riluzole - something that may slow progression down for a period of time?