View Poll Results: What would you like to know?
Feedback from Neurologists or Pulmonlogists or Neuromuscular specialists 17 68.00%
Name of newly discovered protein that RCH4 targets 8 32.00%
Actual name of RCH4 drug 9 36.00%
Results of Phase II/III trial 18 72.00%
Credentials of scientists / clinicians who developed RCH4 10 40.00%
Other, please note in comment! 2 8.00%
Multiple Choice Poll. Voters: 25. You may not vote on this poll

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Old 12-07-2017, 07:03 PM #1 (permalink)
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Default RCH4 Desired Info Poll

I'm curious!

EDIT 12/08/17 error on item #4 -> the trial was a Ph. I/II and not II/III.

Last edited by GregK : 12-08-2017 at 11:40 PM
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Old 12-07-2017, 07:09 PM #2 (permalink)
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Default Re: RCH4 Desired Info Poll

I would like the patients who have seen positive results send their information to Dr. Bedlack through their neurologists. I would like to see and hear an open discussion about RCH4 that included both patients taking this substance and neurologists.

If the people who developed this drug would send me some, I'd be happy to write a grant for funding. I have much experience in grant writing and funding projects.
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Old 12-07-2017, 07:20 PM #3 (permalink)
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Default Re: RCH4 Desired Info Poll

Quote:
Originally Posted by KimT View Post
I would like the patients who have seen positive results send their information to Dr. Bedlack through their neurologists.
Kim, me too! But due to the legal and financial issues, I'm pretty sure he's out of this permanently.

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Old 12-08-2017, 05:32 PM #4 (permalink)
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Default Re: RCH4 Desired Info Poll

I sort-of understand that the RCH4 providers do not want to identify themselves because they are afraid of being prosecuted for illegally distributing a drug. But if their motives are genuine, then surely there is a way to release information about the mechanism and manufacture.
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Old 12-08-2017, 06:17 PM #5 (permalink)
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Default Re: RCH4 Desired Info Poll

Hi Gorby,
Some of the RCH4 folks maintain that the distribution model is legal. They get quite a bit of negative feedback on that point.
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Old 12-08-2017, 11:20 PM #6 (permalink)
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Default Re: RCH4 Desired Info Poll

What is the purported reason for all the secrecy? Are they afraid a stampede of PALs will show up at the door?
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Old 12-08-2017, 11:35 PM #7 (permalink)
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Default Re: RCH4 Desired Info Poll

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What is the purported reason for all the secrecy? Are they afraid a stampede of PALs will show up at the door?
I believe the stated reasons are
- protect their IP, intellectual property, and
- protect the identities of the creators (no, I don't get that one either)

Hopefully one of the RCH4 pALS will correct or expand on this.
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Old 12-09-2017, 12:57 AM #8 (permalink)
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Quote:
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What is the purported reason for all the secrecy? Are they afraid a stampede of PALs will show up at the door?
to be honest - if it truly does work, that is exactly what would happen isn't it? and if it does work, shouldn't all PALS have access to it?
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Old 12-09-2017, 09:07 AM #9 (permalink)
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Default Re: RCH4 Desired Info Poll

I honestly hate the feeling of hope that the threads about this drug create. I am a scientist myself, although in an unrelated to medicine field. Therefore, the secrecy and distribution surrounding this drug screams spam. However, I also know how much things are broken in the US, especially the big Parma industry. I can see how, maybe, someone trying to go against the system would end up distributing the medication through church groups... Ughh, I still can't believe it though.

I just want to add that I'm sorry about the autocorrect typos in my post.... it was very late at night and things are very hectic. Sorry though...
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Old 12-09-2017, 10:00 AM #10 (permalink)
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Default Re: RCH4 Desired Info Poll

Are we sure it is a drug and not a combination of unregulated substances?

I would think if it works, there would be thousands of people willing to invest. Something just isn't right but I can't figure out what that something might be.
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Old 12-09-2017, 05:56 PM #11 (permalink)
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Default Re: RCH4 Desired Info Poll

Quote:
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Are we sure it is a drug and not a combination of unregulated substances?
As far as I can tell, the SOLE thing we're sure of is that there's a small (<20?) group of people claiming it works. Oh! And there's a website!
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Old 12-09-2017, 06:06 PM #12 (permalink)
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Default Re: RCH4 Desired Info Poll

And one of our members that was on it still lost his life to the monster, so it may slow progression, but really we know nothing, even after a couple of years.

If it worked there would be a stampede. If it works and it is only being given to <20 people worldwide I can't think of anything more cruel than to deny it to hundreds of thousands.

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Old 12-09-2017, 06:25 PM #13 (permalink)
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Default Re: RCH4 Desired Info Poll

Kim - I had the same idea (that it is a combination of unregulated substances aka supplements). But according to the RCH4 website;

"A previously unrecognised protein was noted that rarely appeared in donated specimens. Investigation into the origin revealed that the specimens exclusively originated from patients diagnosed with ALS/MND, FTD, or Parkinsons. A specific B-cell sub set was identified as the source, the receptors were characterised and a molecule developed which recognises that receptor and nothing else. It cross links the receptor, causing apoptosis, thus suppressing the expression of the offending protein. "
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Old 12-09-2017, 06:47 PM #14 (permalink)
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Default Re: RCH4 Desired Info Poll

Let's do some math. The website says that 3000 total doses have been given to ALS patients. Elsewhere it says that injections are twice a week. So that's 375 months of treatment distributed over all patients. The website further says that patients have been on the drug for between 3 months and 37 months. So there are a maximum of 113 patients and a minimum of 9. That's unfortunately a pretty big spread. If we assume that the average length of time for each patient is 15 months (corresponding to their graph of ALSFRS) then we get 24 patients. What about the other 449,976 of us? Not to mention the tens of thousands that have died since the study started.
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Old 12-09-2017, 07:01 PM #15 (permalink)
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Default Re: RCH4 Desired Info Poll

Ok, one more comment....

The RCH4 website says that they would need $19K US per patient for a trial. Edaravone was approved based on a 137 patient double-blind Phase III study. So that's 69 patients taking treatment, 68 on placebo. I'll assume that placebo costs $10K per patient. Then the amount of money to fund a full trial is a little over 2 million dollars. The RCH4 people claim that their drug is much more effective than edaravone, so it is possible that a statistically significant result could be demonstrated with even fewer patients.
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