Still here thanks to RCH4

[KimT]

Brad,

I was hoping you would post because I saw your name on Patients Like Me. Thank you.

 

[GregK]

To all who are interested in this topic, plz see this poll:
https://www.alsforums.com/forum/general-discussion-about-als-mnd/40246-rch4-desired-info-poll.html

 

[notBrad]

Brad,

I was hoping you would post because I saw your name on Patients Like Me. Thank you.

Thanks. Happy to do so. The RC Charity Group has treated me great and deserve kudos for it.

 

[ruriko]

I contacted them on the website and waiting for their reply now.
Did they send me a form? Did anyone apply thru website or anywhere else?

 

[nickrr]

Hi Everyone, i just wanted to share my progress on RCH4, i have been on it for almost 6 months now and it has halted my progression, no side effects. my ALSFRS has stayed at 41 ever since taking RCH4.

 

[GregK]

Good for you, Nick!

Now, convince 'em to release the research and trial info so the rest of us won't think it's a scam, plz!!

 

[Steven A Williams]

Hi Nick,
That's great news. I have been on it for 6 months too, and my ALSFR-S stayed pretty stable too. But has recently dropped by a couple of points. Not bad though considering most people who suffer from ALS drop about a point every month.
Steve Williams

 

[nickrr]

Greg
just out of curiosity, do you think that all the users that posted their results on the forums are fake? all those people that confirmed RCH4 is real and it works are all lies?

I have attached a recent letter from my neurologist to confirm:
I have ALS
i am on RCH4
My ALSFRS

I can tell you its not a scam, it works. Personally, that's all that matters to me. At first i though i was one of only a few but i have met and spoken with many others who have had similar or better results than i have.

( Steven Williams, Jennyinfrance, southernmichigan, notBrad, madmarlon, mich5, kenschatz, Osiyo, Dr JNB, uheintz, - PALS who reported on RCH4 on this website ) there are many more on other forums and PLM website, we cant all be fake.

 

[Romeosc]

Can you take while using Radicava and Riluzole?

 

[GregK]

Greg
just out of curiosity, do you think that all the users that posted their results on the forums are fake? all those people that confirmed RCH4 is real and it works are all lies?

In order:
No,
No.

But I also don't know you (you=ALL RCH4 users), so I have zero proof of if you're real or if you have any qualifications to promote a drug.

I also don't know the validity of first-hand reports from an apparently hand-picked group of recipients, as compared to an actual, peer reviewed study/trial.

What I DO know, and what personally gives me pause, is that RCH4:
- is shrouded in secrecy,
- refuses to publish the actual information about an alleged Orphan Drug,
- refuses to release results and details of an alleged FDA trial,
- refuses to release names of professionals allegedly involved,
- repeatedly claims it can no longer afford to produce and then finds new funding,
- appears to hand-pick recipients, as I've seen numerous mentions of non-response, and finally
- attacks and harms professionals that I respect.

I have attached a recent letter from my neurologist ...

Thank you, seriously.
That's the single most compelling bit of info that I've seen to date.

Note: I believe that I've answered your questions earnestly and without malice, with my, and MY only, personal opinion.
And further, I do understand the frustration that one experiences when one's integrity is questioned.
-------------------------*
But do be aware that, as an ALS Forums Moderator, I will not allow this thread to fall into yet another brawl.

 

[Wilson2009]

There seems to be a disconnect between the letter and yesterday's post in regard to the ALSFR-S score. You indicated that you have stayed at 41, but the letter from the Doctor indicates 46. Why the difference?

 

[nickrr]

Wilson
41 score. The RCH4 charity requires that we fill in and score ourselves on a monthly bases for our records and theirs and to monitor our progression. The first time i filled it in August 2017 i underscored myself. This is because I have the use of one arm and not the other and i didnt know if some of the question related to both or one. (my mistake).
For example: Q5. cutting food (0-4) i scored myself a 2 because my left arm is somewhat dead, the doctor scored me a 3 because i can perfectly use my right hand/arm to cut and eat food.
As the ALSFRS is an observational evaluation, different observers will always score it differently. Both scores confirm that my ALSFRS decline has stopped since starting RCH4.

Nick

 

[KimT]

Nick,

I'm very happy it's working for you. I got no reply from the company and I've contacted them twice during the past year.
Like I said, if it's a money issue, I have tons of experience in fundraising and writing grants.

 

[nickrr]

Kim
Its not a money issue, the charity will not accept money from you even if you offered, trust me i offered. i cant understand why no one replied back to you, can you try again by using the contact us page
<< Mod note: link to commercial (?) website not allowed >>
i wish you the best of luck
Nick

 

[Steven A Williams]

Hi GregK,
I am also taking RCH4 with great results. I know of about another 18 patients that are taking it. Look on Patients Like Me web site to see more patients. In addition, I know of a few more than are featured on that web site. I also wanted to point out that the RCH4 web site is not commercial. The suppliers were always a charity and never charged anyone for their drug nor for their support. I think it is time for people to pay attention to RCH4.
Thanks, Steve.