Still here thanks to RCH4

[GregK]

Re: RCH4 revisited again

Also I see that RCH4 currently is the most popular vote on ALS Untangled
ALSUntangled.com - Open Reviews

Which is nothing more than an indicator of curiosity. Absolutely nothing to do with efficacy.

You've mentioned that 6 others are taking RCH4, when you get to 60, with positive results, then I'll listen.

You seem to think you're the first to present a "brand new wonder treatment", trust me, you ain't. This forum is rife with failed wonder cures.

 

[GregK]

RCH4 is seeing an ongoing discussion over at ALS TDI!

https://www.als.net/forum/yaf_postst55169p14_rch4.aspx

 

[GregK]

I vaguely remember several threads about RCH4 and didn't think it was available to PALS. Is it available. If so, how do we get it? I thought some of us tried to contact the company and received no response.

Kim, If you drop RCH4 into Google you'll find their recent site.

 

[jennyinfrance]

Yes I can still breathe without the vent. Admittedly, I get out of breath very easily but if I’m sitting, I can spend an hour or so before I feel the need to go back on the vent. I don’t know if they are taking more patients but this is their contact form. (link removed)
A while ago, after the EV debacle, funding was withdrawn so existing pals dosage was reduced in order to spread out existing supply. Unfortunately, my stability stopped but I am sure my progression would have been faster without the reduced dose. Obviously some pals on rch4 are cagey because they want to protect their own interests. I am speaking out because it’s about time RCH4 deserved recognition. By the way it’s top of the chart awaiting review by als untangled. PS Thé treatment is free

 

[madmarlon]

Hi,

Just wanted to update on my wifes progress with RCH4.

Good to see Atsugi still on here. I remember the good words of advice you gave in Jan 16 when my wife first activated.

The good news is that she has been on RCH4 for nearly 2 years and progression has completely halted and is still walking around fine.
Her two identical triplet sisters and mother died within 18 months of onset.

She has in fact started showing signs of gaining strength (not regaining muscle groups lost) and hence her ALSFR-S score has even crept back up a little.

 

[jennyinfrance]

Re: RCH4 revisited again

Well here we go again. If you can’t be civil then I’m done with this forum. I’m just telling it as it is. I really don’t know what your problem is. You seem very bitter that I’m doing ok on this drug. I’m a good person and don’t deserve this goodbye

 

[jennyinfrance]

Thank you for posting your wife’s progress. GregK, a moderator, has just insulted my intelligence. I don’t need this upset. I’m afraid I’m taking myself out of this forum. Good luck against this pack of wolves x

 

[Kristina1]

I looked at their website and did not like the look of it at all. With the cartoon animations and bad writing and zero scientific literature it looked very fishy. I would also never put a medication in my body that I did not know what it was. A "secret" compound? Hell no, for me personally. My husband is a research scientist at a pharma company, so anytime I am prescribed anything he spends an hour reading the scientific literature and studying its mechanism and all that and then explaining it to me and discussing with me.

That said.. How can this be a scam when PALS are saying they've been on it for 2 years and never asked to pay for it? I don't see the nefarious endgame here if this group is not charging money.

Jenny, I'm very happy for you that you feel this is helping you and I wish you all the best.

 

[madmarlon]

Kristina1,

We were of the same option when Ness was first diagnosed, but when you have watched 3 of your immediate family die (including 2 triplet sisters) from this terrible disease, it does make you more desperate to cling to some for of hope of cure or treatment.
We had researched everything that was out there and the only thing that was not really discounted by anyone taking it, was RCH4 and that is why we decided that we would give a try.
All the communications with the suppliers are very professional and very caring and so I cannot thank them enough and and am of firm belief that she would not be with me now without the drug.
I understand that the website might be different etc and yes their approach is not the norm but that does not mean that the drug does not work or something is 'going on'
We have never been charged a penny for the drug in two years and have offered to when the stocks were almost exhausted, but were declined.
I am happy to talk to anyone who is interested, just PM me and I'm happy to talk about our experience or you can talk to Ness for what she thinks. Nothing to hide here.
Please keep postings in forums civil, as I know several people on RCH4 that are now not feeding back info on the forums, because they get vilified every time they comment. If you have dramas with the website or the way the suppliers are working or presenting info on their website, feel free to call it out, but leave the users of RCH4 free to report how they are going. They are people suffering ALS the same as you are!

 

[KimT]

Thank you for posting. I read the whole thread at ALSTDI and I have the same question. How can I get it? Is it no longer available because the funding dried up?

If the drug had worked, why would the people funding the project stop? Did they not see the results and communicate with PALS taking the drug? If they had proof of its success, why would something a PALS wrote or blogged or said keep a wonder drug from coming to fruition? I guess I just don't understand.

The site also states that Dr. Bedlack "privately wrote" something regarding the investigating PALS' opinion and blog. Knowing Dr. Bedlack, I think he would move Heaven and earth to get something that worked in PALS hands.

Again, I'm so happy it is working and really want to hear more about it.

 

[GregK]

Thank you for posting your wife’s progress. GregK, a moderator, has just insulted my intelligence. I don’t need this upset. I’m afraid I’m taking myself out of this forum. Good luck against this pack of wolves x

Good riddance.

And, fwiw, that was my personal opinion, not as a Mod.

If you're too emotionally stunted to endure skepticism, stay off the Internet.
You spent so much time attacking Laurie for imagined slights that my disrespect for you should have been anticipated.

And to enlighten your ignorance, another job of Moderators is to purge obnoxious people, which you've proven to be.
If you continue to abuse Mods or any forum member, Forum rules state that you'll be banned. Unlike TDI and PLM, that isn't tolerated here.

You reap what you sow. Remain civil and so will we.

To all others, we're very interested in this! We'd do back flips if it's real!

But one thing lacking is input from your Doctors! Any idiot can fake results and charts (although there seems to be a bunch of you!) but actual feedback from recognized Doctors would be invaluable!

 

[GregK]

Is it no longer available because the funding dried up?

If the drug had worked, why would the people funding the project stop?understand.

It seems they got another supply, reportedly soon to run out. Jenny's recent charts note that she's doing partial doses to stretch it, but many others are still on the full dose....

Also reportedly, the 'charity' dried up because of Eric's SCAM article. Which seems odd as they're (actually, he, someone named Richard) based in the UK.

And as to where to get it, again, simply drop RCH4 into Google, their new website will be one of the first hits.

The site also states that Dr. Bedlack "privately wrote" something regarding the investigating PALS' opinion and blog. Knowing Dr. Bedlack, I think he would move Heaven and earth to get something that worked in PALS it.

True dat. In the PLM thread it's noted many times that Dr. B admitted "in an email" that this isn't a scam, but no one's produced that email.
I'd surely love to see it!

Be aware that because of Eric's SCAM article, someone associated with RCH4 made an official complaint against Dr. B causing him legal and financial grief. The full text of the complaint can be seen in the PLM thread.

 

[Atsugi]

Just in case a reader is not familiar, here's something I can verify:

Dr Rick Bedlack of Duke University Neurology (both widely respected) published an article in the long-respected journal Nature titled "Untangling the ALS X-Files." In this single page perspective, he tells us that he has validated 34 ALS reversals. He offers three possible reasons that may explain why these patients reversed their ALS: 1) Mimic disease--maybe it wasn't really ALS, or 2) The patient had a rare genetic advantage over ALS, or 3) Amazingly, maybe their treatment actually worked!

Dr B says he has enlisted some patients as research subjects, and he's working on understanding their reversals.

Info as of 19 Oct 2017

 

[Atsugi]

For anyone interested in the controversy, here's a tiny input:

On a website touting this New ALS Drug, RCH4, the writer says that they are a private charitable group of Europeans who has discovered a drug that might lengthen the time (months) before a patient needs a trach or dies. Importantly, they say they presented their discovery to some world-class ALS researchers, and all, every one, rejected them. They were called a scam. They received a lot of hate mail. They specifically say they do not vouch for the effectiveness of the drug. They say that they might provide the drug, free of charge, to someone who applies. But elsewhere on the site, they say that the controversy has dried up their funding. They refuse to share their discovery with anyone else.

Is it a scam? We've seen some scams before. We've seen "cures" and we've seen people claiming that ALS doesn't even exist. I cannot explain how or why it all these things happen.

Normally, I always say that any terminally ill person has the inherent right to try anything they want. But I don't encourage this one. Even if your local doctor documents objective improvements over time, that is still not the last word. A few placebo-like "reversals" could cause research money to be directed away from legitimate researchers toward the "cure du jour."

False hope can undermine true science. You might totally disagree with me. Please do. I just wanted to give some input here, to help our PALS if possible.

 

[KimT]

Good points, Mike. I'm convinced my diet and supplements were helping because I'm off the diet now and I'm more fatigued, have more fasciculations, and it's harder to walk on the treadmill. Cause and effect....I won't know....ever. But I'll be back on it big time January 1 so I'll be able to test it.