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    #31
    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.

    unnamed.jpg

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      #32
      Whats RCH4?
      ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
      I'm staying positive and taking each day as it comes.

      Comment


        #33
        Hi nrmnd

        That's wonderful news for you, long may it last.

        There seems to be a lot of confusion, and controversy on this thread surrounding this drug. Did you participate in a clinical trial ? How did you obtain access to this drug, and how do others that want to give it a try do so ? If you did not participate a clinical trial did a doctor prescribe it for you ?

        CCxx

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          #34
          lease share details. many of us want to give this a try. So please provide the following info:
          1. Do you live in the UK?
          2. How did you acquire the medication?
          3. How did you get it prescribed?
          4. How was it administered and by whom?

          I am asking this because many want details.

          Charles

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            #35
            I would love more details about this. Is it available to everyone with MND. Why have more people not tried this treatment especially if it is free?

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              #36
              nrmnd:

              To follow up my prior post.
              I am very pleased for you.
              However forgive my suspicion in that there is a lot of 'cloak and dagger' information on this.
              If you are bona fide then please be absolutely transparent about yourself and your sourcing of this treatment.
              My suspicions are raised by the lack of factual information about yourself.
              Given you have posted this highly promising graph I humbly submit that you owe it to us all on this forum to be completely tansparent about your circumstances.
              Sincerely
              Charles

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                #37
                I was doing some research on internet, and I can't find any clinical information, or the effectiveness regarding this drug Rch4. I did come across this article for what's its worth about Rch4.

                Maybe nrmnd will be able to clarify better where and how he/she obtained this drug ?

                CC xox

                *****

                ALS-New-Drug: New-Scam?
                April 14, 2016 ENV

                UPDATE – June 29, 2016: Apparently the site is back and whining that ALS Untangled is somehow responsible for them losing “charitable funding”. ALS Untangled had nothing to do with RCH4 except having asked me to take the lead in gathering information about it from the provider and from patients. My initial assessment was indeed made quickly but was based on all the information currently available, and was made based on my decades of expert professional experience in identifying Internet scams. There is currently zero scientific evidence for any of the claims made of that website and the provider has been given multiple ongoing opportunities to back up the claims with objective evidence. I never made any claim of “criminality” – rather I feel that something is not right and that PALS should avoid injecting themselves with a completely anonymous substance.

                UPDATE – May 12, 2016: Apparently the domain owner, Michael Richards, pulled the site and folded up his tent. No idea what he told “his patients”. I have absolutely no guilt over this. If all it took was one person questioning the veracity of that RCH4 whateveritwas to make him pull up stakes, then there was nothing worth putting hope into in the first place.

                UPDATE: If anyone has attempted to obtain this drug and have retained emails or postal letters, please contact me so I can investigate further.

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                  #38
                  Hello Charles
                  I agree. I have looked up everyone who has put a positive posting on the Forum who has recommended Rch4 as a wonder drug and have found no-one with a traceable profile. They appear to be anonymous. If it was me I would be shouting the drug's success from the roof-tops!!

                  Feeling overwhelmed and desperate, I recently contacted the Charity offering Rch4 for more information. I received a sympathetic response and they asked me to send then more details so I could be considered. They also sent lots of information but little about the drug itself except they could make no promises as to whether it would work and they need a doctor to support any application. They did not say who they were, or where they were. All their information was totally anonymous. The graphs and statistics they produce give convincing comparisons against other drugs and show Rch4s as having an impressive success rate. This information makes it tempting to take things further, especially as they offer to provide the drug free. However, I also contacted Eric Valor (EricValor.org) who suffers from MND and has dedicated his life to keeping track of all the various ASL research and drug trials. He advises against even thinking about considering Rch4 because they had consistently refused to give details as to what is actually in a drug that they are asking to be injected twice a week. What I find suspicious is that none of those already receiving the drug have had it analysed. That would seem a simple way to remove any doubt about its content and safety.
                  I would certainly give it a go if those offering Rch4 were more transparent, but as things stand it appears it' s just too risky. Surely, it can't be a hoax?? I still wonder who these people are who are recommending Rch4 and whether they actually exist.
                  Let's hope that 2018 is a breakthrough year and a new drug emerges to help us all.
                  Annb

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                    #39
                    Hello again

                    Goodness - Just found Rch4 is on FACEBOOK!

                    About
                    RCH4, a new treatment drug for ALS/MND supplied free of charge as a humanitarian undertaking. A previously unknown protein which is produced by the body and which promotes ALS was discovered. The drug is designed to safely stops production of the protein.
                    categories
                    Health & wellness website · Educational research centre · Community

                    Now what should we make of it?

                    Annb

                    Comment


                      #40
                      Good post Ann, thanks. x

                      Btw, they are reportedly based in London.
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functioning limbs - No speech - Feeding tube - Overnight NIV.

                      Comment


                        #41
                        Hello Ellie

                        I am intrigued. Where did you find them based in London?

                        Annb

                        Comment


                          #42
                          I can't claim any credit for that info Annb! It comes from the guys over in ALSTDI.
                          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                          Eye gaze user - No functioning limbs - No speech - Feeding tube - Overnight NIV.

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                            #43
                            It smells like a scam to me.

                            Be careful to those in search of this drug, and all the best I hope it proves to be an effective treatment as nrmnd claims it to be.

                            xox

                            Comment


                              #44
                              charles, annb and CC

                              I am happy to give you all the information you like. My name is Nick, i live in Nottingham, UK, i have been on RCH4 for the past 5/6 months now. like all of you i heard about RCH4 on forums and i decided to contact the charity, they were professional and offered me lots of support and help. i provided them with my medical records and letter from my neurologist, they approved and sent me the drug. the drug is administered twice weekly via IM injection.

                              I know its hard to believe but RCH4 has saved me, i lost my left arm to this disease and was about to lose my right, since taking RCH4 in August 2017 almost all my symptoms have stopped. Also there is absolutely no side effects, the charity is providing RCH4 for free and have been doing so for years. From what i understand the charity has limited supplies of RCH4 and can not offer it to everyone as money has dried up, i believe they might run out this year at some point. I am not the only one taking rch4, i have met and spoken to others who have better results than i have, check PLM website of others who evaluated RCH4. i guarantee that you will not meet anyone who has taken RCH4 and has anything negative to say. RCH4 WORKS and should be available to all.

                              https://www.patientslikeme.com/treat...s-and-efficacy

                              I am now dedicating my time and effort to helping the charity take RCH4 forward and do a phase II/III trials

                              I am happy to speak to anyone over the phone or PM me to answer questions. I might not be able to answer all the questions but you guys are more than welcome to email them directly on the website http://www.als-new-drug.com/

                              Nick

                              Comment


                                #45
                                Hi Nick

                                Thanks for your reply, but I'm still just as confused about this drug ??

                                What is the name of this charity ? Is it based in the UK ? How did they obtain this drug ? Were clinical trails done ? Are you saying this 'charity' sent you the drug not a medical facility ? Why has the als/mnd medical professionals not spoken about this drug and the outstanding results it has produced ? Why does this 'charity' only have it ?

                                You say money has 'dried up' for this charity ? Who is funding this charity ?

                                Sorry for all the questions, but it all seems so mysterious to me.

                                Good luck to you long may your incredible results continue.

                                CCxx
                                Last edited by ccinjersey; 6 January 2018, 18:38.

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