Announcement

Collapse
No announcement yet.

Rch4

Collapse
This topic is closed.
X
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Originally posted by Puddy View Post
    That is so sad. So much goes towards cancer research and their advertising yet MND is just as devastating.
    Yes the whole MND scene is sad.
    This makes interesting reading.
    https://www.als-new-drug.com/difficulties

    Also the drug has had the highest number of votes ever on ALS Untangled for years.
    http://www.alsuntangled.com/open.php

    Yet it is ignored by the establishment.

    My own experience
    zM (2).png

    Comment


      Thanks for sharing your info originalthought, and the links. I hope for the rolling out widely of RCH4 very soon so double blind trials need to get a move on. Is it a trial that you have been on or what? Lynne
      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


        Originally posted by Lynne K View Post
        Thanks for sharing your info originalthought, and the links. I hope for the rolling out widely of RCH4 very soon so double blind trials need to get a move on. Is it a trial that you have been on or what? Lynne
        Lynn, no it is not a clinical trial. A charity supplies rch4 free of charge when they have funds. After malicious posters untruthfully said it is all a scam, their funding dried up and we are worried if we will continue to be able to get it.

        Comment


          Ok originalthought. I hope that it gets looked into by well qualified scientific researchers very soon. Lynne
          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


            Originally posted by Lynne K View Post
            Ok originalthought. I hope that it gets looked into by well qualified scientific researchers very soon. Lynne
            Lynne the charity are all unpaid doctors and scientists see here

            Comment


              Originally posted by originalthought View Post
              Lynne the charity are all unpaid doctors and scientists see here
              Wondering what they were specialising in? Who is the Pharma company making the drug? All a little too vague for me I'm afraid.

              From the disclaimer "​​Nothing in this web site may be considered to be medical advice." So what is it the website is claiming?

              Need answers.

              Comment


                Originally posted by Sportingmac View Post
                Wondering what they were specialising in? Who is the Pharma company making the drug? All a little too vague for me I'm afraid.

                From the disclaimer "​​Nothing in this web site may be considered to be medical advice." So what is it the website is claiming?

                Need answers.
                Sportingmac, you have appeared elsewhere as a nay-sayer. You do not take the drug so nothing for you to be interested in or be afraid of.

                They are an unpaid charity and they make clear that they make no claims whatever.

                There is separate website run by PALS themselves who take RCH4
                http://rch4als.com
                RCH4 has the highest number of votes in the history of ALS Untangled
                http://www.alsuntangled.com/open.php

                From PALS own reports on the Internet
                Attached Files

                Comment


                  Just a thought, and you may have already tried this, but could we bombard our MP's with this?




                  Husband, Nigel, diagnosed with ALS in July 2019. We live in Spain and the medical care is superb. Nigel currently taking Riluzole. Tried acupuncture/Chinese medicine and bee venom (privately), but not helpful. Had stem cell therapy 6 months ago, but no improvement so far.

                  Comment


                    Originally posted by originalthought View Post
                    You do not take the drug so nothing for you to be interested in or be afraid of.
                    Originalthought,

                    You surely must realise how vile it is for you and your ilk to taunt valued Forum members with a product which is simply not available.

                    You, and others like you, join this Forum simply to tell us all how wonderful this elusive product is, knowing full well that not one person reading your effusive posts will be able to source the product - you are being beyond cruel.

                    I urge you, and the others like you, who join the Forum only to post in this thread, to take a good look at your conscience before you write one more word on this topic. You may as well be extoling the virtues of unicorn milk to us and it is not acceptable to treat us with such contempt.

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

                    Comment


                      This drug has been sketchy from the beginning of this thread right up until now in my opinion.

                      More to the point the so called 'Charity'. Who are these doctors, and scientists working for free on a drug they make no claims will work, but are seeking money to continue to fund their work ????

                      Why all this cloak and dagger stuff from the Charity??? If they have created a drug that those taking it claim is actually working why have these brilliant doctors, and scientists not come forward ?? They have done something no else has been able to do. Why are they hiding in the shadows ???

                      Its also very sketchy to me random forum members suddenly join this forum only to promote this drug.

                      ...And why do the random forum members that suddenly pop up on this thread to rave about this drug criticize, and question the existing forum members here for questioning them ???

                      Why has the Charity and drug been labeled a scam ???

                      Just my observation, opinion, and confusion of this drug.

                      Wishing all those taking RCH4 much success with it, maybe the rest of the ALS/MND community will have access to it with real proven, and positive results

                      CCxx

                      Comment


                        Originally posted by originalthought View Post
                        Sportingmac, you have appeared elsewhere as a nay-sayer. You do not take the drug so nothing for you to be interested in or be afraid of.

                        They are an unpaid charity and they make clear that they make no claims whatever.

                        There is separate website run by PALS themselves who take RCH4
                        http://rch4als.com
                        RCH4 has the highest number of votes in the history of ALS Untangled
                        http://www.alsuntangled.com/open.php

                        From PALS own reports on the Internet
                        Originalthought - I am being realistic and pragmatic. I can make a spreadsheet say whatever I want - quite easy really. There are variants of MND - some fast progressing some slow progressing. Which variant are your spreadsheet from?

                        I live in hope that a cure can be found but realistic enough to have reservations that it will work on everyone. Not everyone gets cured from cancer!

                        But you haven't answered my questions - so come on - what are the specialisms of he doctors? and what research have they published? and who is the Pharma who makes this under licence?

                        Time for you to post evidence not opinion.

                        Comment


                          Hi Sportingmac;

                          I try to stay off this thread because I don't know much about it.

                          Originally posted by originalthought View Post
                          Sportingmac, you have appeared elsewhere as a nay-sayer. You do not take the drug so nothing for you to be interested in or be afraid of.
                          Not quite sure what a Nay-sayer is so I can't comment on that. I don't like people putting labels on people. How can anyone say that you are not interested in possible cures for Mnd on the Mnda forum, what a ludicrous remark.

                          I've always valued your straight forward posts.

                          We just hope it is proven to make a difference, like you and many other valued members of the forum I am highly skeptical.

                          Love Terry
                          TB once said that "The forum is still the best source for friendship and information."

                          It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                          Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                          Comment


                            Well said Ellie, my sentiments exactly.
                            Love Jerry x

                            Comment


                              I'm all for free speech, but I'm wondering if it is worth asking MNDA to consider banning this thread for the reasons Ellie states so eloquently.

                              Doug

                              Comment


                                Dear all,
                                I am taking RCH4 since July 2018.
                                I was diagnosed with ALS in March 2017 and in 1 year my evolution has been declining rapidly. In May 2018, I had a collapse, getting the tracheostomy and mechanical ventilation for breathing, weight 44 kg.
                                After starting RCH4, my condition got better, gaining weight (over 8 kg), can walk, can type. My score is not high but it is stable.
                                I am very grateful to Charity group and I wish that more patients to have the chance to get RCH4 drug.
                                This is my chart:
                                Chart.jpg
                                Attached Files

                                Comment

                                Working...
                                X