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Thanks Tillie. No, they made no claims other than what was stated on the site. They have been very consistent in their dealings with me and have in no way insinuated that it was a cure. In fact they have emphatically stated that it is not a cure and for me not to expect it to be.
 
Wish I could have participated in it. Bedlack wouldn't support it in any way.

Vince
 
Maybe that'll change Vince. :)
 
notBrad, this is great news. How long have you been taking this drug and how long have you tracked the decreased drop in ALSFRS-R? Would your neurologist confirm your report in an email to Dr. Bedlack? This is the kind of information ALSUntangled needs.

Regarding your statement of the website containing "ample information on how the drug works", there are only claims of some aberrant protein that the drug works against. There are no publications about the protein being involved in ALS. Searches of Google and PubMed return no relevant results. Searches of the same for the drug named also return no relevant results. Therefore, the RCH4 website contains only unsubstantiated claims, not "ample information". At ALSUntangled we want to get to the truth of an alternative treatment option and barring any objective information on MOA, drug composition, preclinical data, or rigorous trial in humans, the report would be "F".

And I personally stand by my analysis until I am given more objective information.
 
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.
Dear Eric, firstly I would like to say how much I admire your work in the ALS community. However, Regarding RCH4 (Which is probably a pseudonym) I think you have given out a message to the ALS community which is unfounded and your personal opinion. I have been on the RCH4 treatment for a short while so cannot say I have felt any improvements yet. I have not experienced any side effects either. What I can say is that the people who are supplying me with this treatment have been very professional, supportive and have a great scientific/medical knowledge. They have never asked for money and I am satisfied that they are genuine and supplying PALS for the right reasons. I cannot see how this could possibly be a scam. I agree their website may not be the best but consider the fact that they are retired gentlemen in the scientific/medical field. Does the appearance of their website really matter? I think you should have contacted them first and now is the time to take your "Scam" post off your blog because this clearly is not a scam. Best regards Jenny
 
I'd love to see this put to rest. Let the people that can and will take it take it if they want. It's their lives, and not usually very long at this point. There are people that are cynical, there are risk takers. The fact that we were taught all our lives (at least I was) that there are no free rides, would cause most people to be leary. Eric is doing what he is doing and obviously not going to change his mind. So be it. He obviously has the respect of many on several forums. It seems like they are currently out of openings for more patients at this time. I got in one month ago, will ask them no questions, and pray I keep receiving it and it works. Hope is priceless in this disease. I tried Deanna for quite some time and gave up. I don't even know why, just felt like it was too complicated and couldn't feel the difference. I tried stem cell too, didn't do a thing for me. Don't think any of the current stem cells including Brainstorm are ready for primetime. If I went into a trial it's usually blind and even if I got lucky and was on the half that got it, slowed or stopped my progression when it was over I would no longer recieve it! Where is the elusive hope there we are all looking for? Ultimately we are all in a boat, but the crazy part is none of the boats are remotely the same, that's one reason this disease is so confounding. There might never be one cure. I heard one PALS tweet he wished a billionaire would get this disease do we could find a cure. First I wish this on no one. Second I know a billionaire that has it - he is very involved and well taken care of but ultimately in a boat of a different color. G-d bless everyone PAL CALS or their families. Let's all pray for a decent life and all be friends. Done with my rant.
 
And yet we all rely so much on ALSU as their resource is second to none, so they have to get their data from somewhere ...
 
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I agree with Ken and am done with it. Simply put based on the initial blog and subsequent posts I don't have faith in Eric's ability to objectively interpret the data much less anything remotely subjective. This extends to ALSU since he's their lead investigator.

I might participate in the future depending on how evenly ALSU reports on it
 
I'm curious, why is ALSU so interested in this when it hardly has near the votes on it's "Open Reviews" list as compared to other alternative treatments on the list? Does the voting count for nothing? Losing faith.
 
Jenny, how do you know they have "great scientific/medical knowledge"? Do you know the names of the people behind this? Would you share that information so that we can all know. Remaining anonymous and refusing to share any scientific evidence of the drug's composition or rationale for efficacy is the opposite of professional. I am glad you have had no side effect and whomever you have been communicating with has been friendly, but do you have any real evidence that what you are injecting is anything more than saline?

I made my initial judgment based on all the objective information currently available. I offered the anonymous provider a chance to prove me wrong. The offer remains open. In fact, I invite ANYONE with objective knowledge to prove me wrong. Right now all we have are promises from a website made by someone in a neighborhood in the south of England (yeah I can do my homework).

If it means that much to you, I will tell Dr. Bedlack that I cannot participate any more. That means more work for him and a much longer wait for objective information on this subject. All I was doing was gathering the facts and writing a draft for the entire ALSUntangled group to edit. I have done this for multiple other ALSUntangled reviews as a service to Dr. Bedlack.

Sometimes opportunity means a particular topic will be investigated out of order. ALSUntangled is entirely volunteer in nature. Please remember that.

Dear Eric, firstly I would like to say how much I admire your work in the ALS community. However, Regarding RCH4 (Which is probably a pseudonym) I think you have given out a message to the ALS community which is unfounded and your personal opinion. I have been on the RCH4 treatment for a short while so cannot say I have felt any improvements yet. I have not experienced any side effects either. What I can say is that the people who are supplying me with this treatment have been very professional, supportive and have a great scientific/medical knowledge. They have never asked for money and I am satisfied that they are genuine and supplying PALS for the right reasons. I cannot see how this could possibly be a scam. I agree their website may not be the best but consider the fact that they are retired gentlemen in the scientific/medical field. Does the appearance of their website really matter? I think you should have contacted them first and now is the time to take your "Scam" post off your blog because this clearly is not a scam. Best regards Jenny
 
OK we're using a Dr. Bedlack. as a what? I am using this RCH4 also and have been for 3 weeks now. I have had no side effects during the first "side effect test" phase. I have increased the dosage as requested by my supplier and am into the end of week 3 which includes 3 injections of 0.5ml or 5 injections of 0.3ml but a total of 1.5ml per week. I have had 8 injections to date and the next injection is tomorrow. I have had as stated no side effects what so ever, and I have learned from others in our Group that if I fill the syringe and let it sit at room temperature for about an hour, then the injection doesn't burn, you don't even notice it. but when it's cold, it burns like hell after you inject.

OK I was chocking on my saliva, and others foods. I had switched to blended foods, and even had problems with must, I was headed to chocking at every meal. Fluids I could not drink without choking unless thickened. So the first thing I noticed was I could drink without thickeners and eat foods that I had chocked on before. I am very pleased with this help because I have decided not to get a stomach button for feeding so it would have led to my death. I refuse to hang on to life at all costs. When this body is finished I will die. No artificial iron lung, when I can't breath on my own than I will die.

So I have 2 things that I have noticed that could have led to my death, swallowing and breathing, swallowing works again, I can't gulp fluids down but I can take my time and enjoy a drink, and I can eat all blended foods without chocking. I can now hold my weight which is a problem for us all, and most of all I have 100% usage of my lungs that I did not have earlier, only about 50% of my lungs was working and I was always out of breath. Not any more, I enjoy this new found breath more than anything. So swallowing with care, and breathing with ease. And my legs are stronger, I can walk around without fear of falling and I can climb stairs and the like, I'm not a superman I'm still marked with ALS and do struggle with sore muscles and the like. But this RCH4 has made a real impact in my life's quality.

I have received no promises from anybody, been told only to that it will work although differently for each individual.

So take it for a gain of salt, or leave it. My Neurologist is very pleased even tickled. No reports to anybody except my controller from this mystery group. They have requested us to be closed mouthed about this. I just want to be on record as a junkie that has tired this RCH4 Peptide for all you idiots out there that say we've been tricked into using something that will turn us into pumpkins. As MACV SOG soldier that went "over the fence" more than 13 times and lived to talk about it, Silver Star, Bronze Star, Purple Heart and a few others. I tell you here and now with all honesty that this drug works for me, if my word is of no value to you then BUTUP NUTUP.
 
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