Unapproved ALS Drug
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Hope is not a word just got a select few PALS. if there is drug that can do for Steve what you say it has done for you Osiyo, than why are they not sharing information so it can be available for the rest of ALS patients? Lord knows what I would give for any improvement or stalling of Steve's progression. Should I or anyone else have to give up anything to receive this help? NO...BUT I WOULD.
I can only hope that it is all you say it is and whoever is controlling this drug and deciding wgo to share it with, shows a heart and comes out with more information. I understand there may be several reasons not to share it with the medical or scientific community and I would just be happy with some proof and a way to get it for Steve. If they do not have monitory reasons than they should be doing this to help PALS.
I am all for defending the drug if you have results but as an a person with ALS you should understand and fight to make it available for anyone who wants to try it. I would only expect that you would not give a hoot about defending this drug because you are to bust trying to make it is available. Secrets should be shared if it makes life better for anyone
I can only hope that it is all you say it is and whoever is controlling this drug and deciding wgo to share it with, shows a heart and comes out with more information. I understand there may be several reasons not to share it with the medical or scientific community and I would just be happy with some proof and a way to get it for Steve. If they do not have monitory reasons than they should be doing this to help PALS.
I am all for defending the drug if you have results but as an a person with ALS you should understand and fight to make it available for anyone who wants to try it. I would only expect that you would not give a hoot about defending this drug because you are to bust trying to make it is available. Secrets should be shared if it makes life better for anyone
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I feel bad that based on Osiyo's positive 3-week report (which has to be placed in context with his over-the-top posts on Eric's site and the high probability of placebo effects in such a short "trial"), people feel they have lost out. It's way too early to think that, though I understand that belief is a different thing.
Brad, I don't know how long your exposure has been; sorry if I missed that.
Mich, you've been a fan for a year, I believe.
Eric is right to point out that positive anecdotal evidence can mask real harms, as it has in many disease states. Medicine marches on-- we used to do most things with hammers and knives-- but it does need the scientific process to do so.
So those of you that are closed out of RCH4, instead of stressing about that, I would suggest that instead, you search the supplements threads to consider what might help, focus on a whole foods diet by mouth or tube, make sure you are using BiPAP effectively if/as needed, get enough sleep, avoid or minimize drugs that interfere with sleep and/or breathing, do things you enjoy every day (like loving, laughing, learning), get your muscles and joints stretched in a safe/effective manner either actively or passively every day, etc. These are all interventions that large-scale observation has connected with quality and/or quantity of life with ALS.
Best,
Laurie
Brad, I don't know how long your exposure has been; sorry if I missed that.
Mich, you've been a fan for a year, I believe.
Eric is right to point out that positive anecdotal evidence can mask real harms, as it has in many disease states. Medicine marches on-- we used to do most things with hammers and knives-- but it does need the scientific process to do so.
So those of you that are closed out of RCH4, instead of stressing about that, I would suggest that instead, you search the supplements threads to consider what might help, focus on a whole foods diet by mouth or tube, make sure you are using BiPAP effectively if/as needed, get enough sleep, avoid or minimize drugs that interfere with sleep and/or breathing, do things you enjoy every day (like loving, laughing, learning), get your muscles and joints stretched in a safe/effective manner either actively or passively every day, etc. These are all interventions that large-scale observation has connected with quality and/or quantity of life with ALS.
Best,
Laurie
I am a European MD living in the Southern Hemisphere and today am astonished to see ALS Untangled make extremely damaging and wholly unfounded insinuations about an experimental MND drug (an `IND`). It takes years and many patients to prove the efficacy of any new drug so the jury will probably be out on this for a while yet. I feel compelled to respond. For what it is worth, (with a few ups and downs) after 22 months on this medication, my monthly ALSFR decline slowed from 1.4 at start to 0.2 over 6 months, stabilised over following 7 months, and reversed by gaining 5 points in last 9 months. This is not the natural progression of MND/ALS. For ALS Untangled to suggest that I and others are getting saline (water) could be interpreted as malicious. I have never frequented the blogs as the answer will not be found there. So how did I find RCH4? In fact a patient of mine told me about it and gave me an email address. Not the instant cure we all wish for, but my current journey from down under to visit family was unthinkable a year ago. One last point, I have never paid anything. Food for thought for the conspiracy theorists. JNB
notBrad
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They did try and share it - from the web site;
"We prepared scientific presentations and compelling clinical evidence of the efficacy and mode of action of the drug.
Scientific presentations were then made, in person, to the Pharmaceutical Industry.
They showed no interest whatever.
We then made scientific presentations, again in person, to the ALS research community and offered the development to them also. They had no interest either.
Following that, we tried to obtain assistance from the ALS funding sources.
They have repeatedly declined to help us."
Edit: I hope they start taking patients again and Steve is among them
Last edited:
notBrad
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In fairness, ALS Untangled did not make the saline comment; Eric did, as a private individual. He was stating it as a possibility, which indeed it is. I agree that getting saline free would be less harmful than paying for it.
I'm sure there are "drugs" sold on Amazon that are really saline as well. A "reputable" practitioner once solemnly sold my sister "medicine" labeled NaCl. You may believe otherwise in re RCH4, but the possibility exists.
On a related topic, I removed an abusive post and the ex post facto apology, hours after they were posted as I was not on line. I want to say two things: apologies to those who saw them; that is not our standard here, and a request that those with overactive typing fingers exercise more respect for their fellow P/CALS.
Best,
Laurie
I'm sure there are "drugs" sold on Amazon that are really saline as well. A "reputable" practitioner once solemnly sold my sister "medicine" labeled NaCl. You may believe otherwise in re RCH4, but the possibility exists.
On a related topic, I removed an abusive post and the ex post facto apology, hours after they were posted as I was not on line. I want to say two things: apologies to those who saw them; that is not our standard here, and a request that those with overactive typing fingers exercise more respect for their fellow P/CALS.
Best,
Laurie
mich5
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his discussion has run its course. this thread was to tell pals about something that i had found helpful. eric, nobody doubts your passion and dedication to furthering and defending our interests, but this time you made a mistake. we all make mistakes.
there have been over 7,500 views of this thread and some have volunteered the information that they are on rch4 ranging from weeks to years. placebo effect does not last that long. some have given personal information on what they have experienced. all have said they have never paid money, most have remarked that they had no side effects, and further, most have seen positive changes. thank you to all who posted about their experiences. in view of the fact that rch4 has been around for some years, what is significant is that no one has posted that they have had any problems with rch4 or the group responsible for giving it out.
regarding alsuntangled, there is information to which alsu is not privy to, or entitled to. if the charitable scientific research group who provide rch4 to us for free wish to remain private, who are we to demand their financial status info? this group has stated that they will not be working with alsu, i will also not be working with alsu (sadly, i have lost some respect for this group regarding how they conduct their reviews).
eric, i understand how you were probably shocked when you learned of a free drug and how you then immediately warned about it. i hope that you will do us all a favor by removing your blog regarding this. thank you, eric.
i see that we have 3 groups of people regarding this matter:
those who support this group and what they do
those who are skeptical
those who want to try it
all 3 groups are passionate about als and want something positive that will improve the quality of our lives. perhaps we can all work towards 'tapping the shoulders' of those who are in charge of the pursestrings of the als research dollars to bring this to clinical trial. that way we will all definitely know.
there have been over 7,500 views of this thread and some have volunteered the information that they are on rch4 ranging from weeks to years. placebo effect does not last that long. some have given personal information on what they have experienced. all have said they have never paid money, most have remarked that they had no side effects, and further, most have seen positive changes. thank you to all who posted about their experiences. in view of the fact that rch4 has been around for some years, what is significant is that no one has posted that they have had any problems with rch4 or the group responsible for giving it out.
regarding alsuntangled, there is information to which alsu is not privy to, or entitled to. if the charitable scientific research group who provide rch4 to us for free wish to remain private, who are we to demand their financial status info? this group has stated that they will not be working with alsu, i will also not be working with alsu (sadly, i have lost some respect for this group regarding how they conduct their reviews).
eric, i understand how you were probably shocked when you learned of a free drug and how you then immediately warned about it. i hope that you will do us all a favor by removing your blog regarding this. thank you, eric.
i see that we have 3 groups of people regarding this matter:
those who support this group and what they do
those who are skeptical
those who want to try it
all 3 groups are passionate about als and want something positive that will improve the quality of our lives. perhaps we can all work towards 'tapping the shoulders' of those who are in charge of the pursestrings of the als research dollars to bring this to clinical trial. that way we will all definitely know.
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