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    #91
    Marlon:
    Thank you for your detailed reply.
    I very much appreciate the time and effort you have taken.
    Strength and good luck to you and your wife.
    I hope you post again in a year and let us know how it goes.

    Strength to you both.

    Charles

    Comment


      #92
      Hello

      I presume that you are liiving in Oz. It is interesting that your wife's Consultant can see the benefits of
      Rch4 but is not prepared to support your comments.

      Whilst I wish your wife continued access to this drug and its help, unless the providers come forward and make it more easily accessible to more suffers I do not see how your postings are of any help except to cause frustration.
      Annb

      Comment


        #93
        Hi,

        Our consultant can see the benefit but because the drug is not FDA approved yet, from a professional position he cannot be a supporter. He is watching closley and is very happy with my wifes lack of progress which prompted him to get gene tests to prove she has the disease because she is doing so well.

        Also I heard, ALSWorldwide are selling counterfeit Edaravone from India and the CEO and his wife drew US$1 million salary & expenses last year from the so-called "Non-Profit". I would advise, do your homework on this company before sending them any money!

        Comment


          #94
          To those interested;

          ALS Worldwide sent me the email below of his apology. Someone else inquired about RCH4 and he realized he had made the mistake and thought I was inquiring about edaravone and not RCH4.

          To; mndmarlon,

          Say what you like about ALS Worldwide but I value their opinion, and respect all the good work they do just as I do MNDA. Can only hope the RC Group will provide more transparency and clinical data to support their claims about RCH4. All the best to your wife.

          CC

          ********

          Dear xxxx,

          Thanks so much for your email. My most sincere apology for the error. In the haze of end-of-workday (2130 hours) the other night, I clearly read Cxxxxxx inquiry about Rch4 and answered as though she had inquired about edaravone. Totally different treatments, unrelated to one another, and I answered Cxxxxxx as though she had asked about edaravone.

          My comments were solely about edaravone, which we have found to be a very efficacious treatment, and about which you can read on our website, FaceBook page and in numerous journals.

          As for Rch4, the sodium chloride product frequently discussed by Richard C of RC Charity Group in UK, we have not seen any relevant benefit amongst those who have used the protocol. That is merely an observation, not a study, and is based on the statements of patients, some of whom may have tried the protocol in an imperfect way.

          Again, my apology for the unintended misstatement in my earlier reply to Cxxxxxx. Please feel free to ask anything else you may wish to discuss. I promise to reply earlier in the evening.

          With kind regards,

          Steve

          Stephen Byer
          [email protected]
          ALS Worldwide
          5808 Dawley Drive
          Fitchburg, WI 53711-7209
          608-663-0920 Office
          608-698-4200 Cell
          608-237-2274 Fax
          Stephen.Byer2 Skype

          To learn more, please visit us online at www.alsworldwide.org and on Facebook and Twitter.

          ALS Worldwide is a nonprofit organization that strives to help people with ALS live better and longer

          by providing free guidance, care and support to patients and their loved ones in more than 150 countries.

          Comment


            #95
            I've also been doing a lot of digging about rch4 and every forum seems to have the same type of discussion going on.

            There also seems to be at least two websites stating they offer the free drug on a limited applicant basis and that they are a charity.

            http://www.als-new-drug.com
            And
            http://rch4.com

            If it was one company/charity offering this new drug then why are there multiple sites?

            I really want this to be true but I'm finding it hard to accept - is there any new info about RCH4?

            Best wishes

            Comment


              #96
              All:
              This is clearly an experimental treatment.
              Its futile looking for validation or compelling research evidence. It is not there.
              You are your own experiment.
              If it were available in the UK with a medical-off I would try it.
              I would be my own research study.
              If I had no side-effects I would trial it for a year.
              If it slowed me down I would keep going.
              I would take snake oil if it slowed me down.
              I would go to Lourdes and drink holy water if it slowed me down.

              Point is its hypothetical because no one will authorize it here.
              Its experimental.

              Charles

              Comment


                #97
                alsuntangled

                Can anyone explain to me how is it that RCH4 has become 2nd on ALSuntangled in just ONE DAY? RCH4 was 1st by over 300 votes and has been so for months (i check it regularly), all the other protocols got extra votes mysteriously in ONE DAY (570 votes for Anti-Retroviral therapy AND 400 votes for Ficompa), just in time for the review to start. i have attached screen shots of this.

                alsuntangled.com/open.php[/url]

                This is not the first time this has happened and this is why i monitor the site very closely, last time RCH4 was top of the list, votes were removed mysteriously and another protocol was evaluated. this is a huge disappointment for me and everyone that wants to see RCH4 evaluated/reviewed.

                Nick
                Attached Files

                Comment


                  #98
                  Hi Nick,

                  Although it shouldn’t be possible, an individual IP address can vote several times in one session, close the tab then start a new session and vote again. It’s silly, basic stuff.

                  Thus, the voting system is open to abuse.

                  Ellie.
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

                  Comment


                    #99
                    Hi Ellie, i understand that but we are talking about hundreds of votes in one day, if it was 10, 20, 30 votes it wouldn't have raised alarms. i think someone internally doesn't want RCH4 evaluated for whatever reason, i cant explain it any other way. so disappointing

                    Nick

                    Comment


                      This is my first post on this forum, my mother has been taking RCH4 for the past 18 months. She has been stable with no side effects at all, we have never been asked to pay for the drug its always been free. This is no scam and I can say that I have not heard one person say they were ever scammed by this group!! I'm pretty sure somebody needs to get scammed first in order to call it a scam!! All I know is that RCH4 is working well with mom, it has stopped her decline and that's all that matters to me!!!!!!!!!!!!

                      Comment


                        good experience with RCH4

                        Hello, all;

                        I am a PALS living in California, USA and diagnosed in Jul '17. After doing due diligence on it, I have been taking a new drug called RCH4 for the last 4 months.

                        It seems to have slowed my rate of disease progression (ALS-FRS decline) by about 79%. There were no side effects that I could detect.

                        There are no agency approvals on this drug. It is given away totally free by a charity.

                        Others have called it a scam but I can't believe that. Not only does it seem to work, but also I have never been asked for so much as a dime and do not feel deceived in any way. All my extensive communication with this charity has been extremely professional and they have been very helpful.

                        In contrast to what Radicava and others cost the "totally free" aspect of RCH4 does lend itself to the thinking that the word "scam" cannot possibly apply.

                        Before taking RCH4 myself, I canvassed a small sample of other users from patient websites, seeking feedback about actual effectiveness and side effects. This obtained eight responses from around the world, all of which were positive. I received no responses from anyone for whom RCH4 did not work, although the website indicates that some 15% may be expected to fall into this category. No user reported any side effects. All eight users experienced varying but marked reductions in their disease progression, as I have. Several expressed high praise for the drug. Statements from the eight users were in good general agreement with the information published on the website.

                        So I became convinced that there was "No scam here" and tried it. So far, so good.

                        Efforts to import a chart of my own progression to this posting did not work. I will share this chart on request. There are many such on the RCH4 website. It's well worth a read, especially the "efficacy" tab.

                        http://als-new-drug.com/

                        best

                        jim

                        Comment


                          Jim:
                          Thanks for your post. Regrettably in the UK it is not endorsed by the medical profession. So doctors will not authorize its administration.
                          Perhaps things will change in the future.
                          good luck and keep us posted how things progress.

                          Charles

                          Comment


                            Leo:
                            I am very pleased for your mom.
                            Which country do you live in?

                            Charles

                            Comment


                              Hi Jim

                              Thanks for your post. Good luck to you and wish you much continued success with this drug.

                              Do you have this drug shipped from the UK to the US, or does the Charity also have it available in the US ? Do you inject it yourself or need a nurse or doctor to do so ? There is no cost to you living in the US to take this medication ?

                              Thanks
                              CC

                              Comment


                                my results and opinions

                                RCH4 which I am taking for the last 4 month is not Edaravone. That is what the lab says.
                                I took this drug for the last 4 month. Although I noticed general weakening I maintained a stable ALSFRS score along last 5 month. RCH4 was provided to me free of any charge , so it does not fit the definition of scam which was an insult. The whole procedure was conducted i a very professianal way. Thanks RCH4 charity.

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