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    I've decided to delete my post and stay out of this thread. Lynne
    Last edited by Lynne K; 26 August 2019, 06:34.
    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


      IONEL,

      You have joined this Forum simply to tell us all how wonderful this elusive product is, knowing full well that not one person reading your effusive post will be able to source the product because it is simply not available - you are being beyond cruel in taunting us.

      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.

      Please stop.

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

      Comment


        I agree with you Ellie.

        Comment


          Very well said, Ellie.
          Dina

          Trying to keep positive, but not always managing.

          Comment


            Fully support your stance Ellie. Reflecting my views on this topic.

            Comment


              At least we can agree on one thing Ellie

              Love The Cat
              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


                Maybe the MNDA would like to sponsor this “wonder drug” company since they have run out of funding, but only if it would help us, their members. I appreciate it is not an approved drug and I recently mentioned it to Sally Light when we met. Sally had not heard of it and she was going to discuss with her colleagues.

                I respect Ellie’s comments and I have shied away from posting on this topic but I feel it’s time to make my position known.

                Barry
                I’m going to do this even if it kills me!

                Comment


                  I’m with you on that Kayleigh. The association is showing a very strange stance.
                  Love Jerry x



                  Originally posted by Kayleigh
                  I think its inappropriate and insensitive that the MNDA's forum is being used to promote a drug that is no longer available.

                  Kayleigh

                  Comment


                    Yes Barry, I too am surprised at Sally's response. I wouldn't discount anything. If you go into 'Community' and then 'Members list' then look up alfadoc you can read what he has posted about RCH4. You have to go to the left hand column to find his posts. He is not a peddler or a quack and he is very happy to talk to anyone on this forum. We are lucky to have him on here and mustn't jump to conclusions. Barry, you can private message me and I can give you further details if you wish or anyone else can for that matter. xx

                    Comment


                      It is very sad that some contributors to this forum consider that those of us who take RCH4 are trying to upset them and this is to be sorely regretted.
                      This thread was started to offer a place where we, the users of this experimental drug could exchange information about side effects, efficacy and find others who are taking it thus enabling comparisons with other medications.

                      Instead, what has happened is the thread has been hijacked by, in some cases, nay sayers who know nothing about it, and in some cases trolls untruthfully shouting SCAM. It was these who caused the voluntary funding for the charity who supplies RCH4 to us free of charge to collapse. It is ironic that the first and only drug which actually slows the progression of MND should be hounded out of existence by the MND community themselves. It is also sad that some contributors here are accusing us of trying to promote the drug. This is completely untrue, as we only wish to exchange information.

                      Just compare the amazing new drug Edaravone, recently approved in the USA. Everyone was hugely enthusiastic. It does not work.
                      Edaravone_study___12_months.jpg
                      RCH4 does work and many on the Internet have repeatedly tried to rubbish it.
                      als-2-year-117_chart.jpg

                      As to the Motor Neurone Disease Association, they have repeatedly refused the charity scientific papers for oral presentation at their annual conferences.
                      https://www.als-new-drug.com/cupid
                      If they have not heard about RCH4, then they do not follow developments in treatment and research. It has been around for years. RCH4 has the highest number of votes in the history of ALS Untangled and the highest rating of efficacy in the history of the Patients Like Me platform
                      I see that the next MND Association conference will be in Perth and there are some 20 plenary oral presentations scheduled. The papers deal with statistics, genomics and mice. Not one of the speakers have ever slowed the disease progression in anyone, But the RCH4 charity has done so for years.

                      Please leave this thread as a safe place for users of RCH4 to exchange real life independent information. We do not wish to upset anyone and we are not promoting anything.

                      Comment


                        Ellie,
                        When I joined this forum, I thought it is about RCH4, not anti-RCH4.
                        I thought that I can share the experience with other patients, to exchange information, to help and to be helped to overcome this terrible disease.
                        I had no intention to offend or upset anyone!
                        I do not promote or advertise. This is only my experience with RCH4.
                        Maybe we should ask why this drug is not available and the suppliers are struggling to cope with malicious attacks.

                        Once again, I don't want to upset anyone; we are all in the same battle.
                        Each one has a small voice, but, many voices could be "roar".

                        All the best!
                        Ionel

                        Comment


                          This thread comes under the heading of Research and Trials. Of course sufferers and their loved ones are going to look at this thread. I did, when my husband was diagnosed with MND, after only 4 months of having a heavy left leg.

                          I was desperate for something to help him, so I asked how I could get in touch with the clinic, then I saw that there was no contact link.

                          Maybe the thread title should be changed to RCH4 - users only.




                          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


                            Good afternoon,

                            We’d like to remind all members that this is an open forum supporting a wide range of topics and all users are welcome to comment and contribute. No thread is exclusive to a particular group, nor are members excluded from contributing to any topics. We do encourage that you review topics and choose whether the subject is something you wish to engage on. We do moderate the forum and will remove any content that goes against our terms of use.

                            As a charity with the vision of a world free from MND, the MND Association welcomes any discussion about research into potential treatments and ultimately a cure for this brutal disease. We have reviewed this thread and feel that it would not be appropriate to remove it.

                            We have previously shared our stance on unproven treatments on this forum. Like many of our members, we are very keen to understand more about RCH4 and to engage with the people behind it. We were hoping to meet them at our 2018 Symposium at which they were invited to share their work with the international research community in our poster presentation session, but they withdrew before the event.

                            We would welcome the chance to talk to them and to discuss any ongoing research they are undertaking and any validated data they are able to provide – by which we mean results that have been managed or checked by an official body, clinician or neurological centre with research credentials. In the UK this could include an MND Association funded care centre for instance. This validation is standard international protocol for researchers to ensure transparency, safety and credibility.

                            As always, we urge people with or affected by MND to consult with their doctor, or other relevant professional, before making any decisions about treatment.

                            Many thanks,

                            Forum admin
                            Our working hours are Monday to Friday 8:30am until 5pm

                            Comment


                              Dear Forum Admin,

                              Given your post above, please also give your opinion on:

                              - The fairness and morality of allowing people to post about a product which is UNAVAILABLE to the people who read the posts

                              To me, as a long-term and active Forum Member living with a terminal illness, I can assure you that these type of posts are beyond cruel and both marginalise and exclude me, and the rest of the bona fide Forum Members, as we cannot avail of the product about which they taunt us - and yes, it is a taunt which shows contempt for the rest of us.

                              I find these types of posts, on which I commented, to be offensive, cause annoyance, needless anxiety and also violate good morals and practice. Furthermore, this cohort of Members join with the sole purpose of posting only on the topic of RCH4, and are not joing this Forum to support other Members with the challenges of living with MND - all of which contravene Forum Rules.

                              The vast majority of these Members, if not all, already post their updates on a dedicated sub-forum on the Patients Like Me website.

                              I know you, as the MNDA, have empathy with those of us living with this life changing terminal illness, so I hope you understand how deeply offensive and upsetting it is to have these types of posts posted again and again, serving no purpose in the Research and Trials sub-forum, or in any other sub-forum for that matter.

                              I look forward to reading your reply.

                              Kind regards,
                              Ellie.
                              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
                              Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

                              Comment


                                Hello Mnda Admin.

                                It's good to hear your position on this thread, and RCH4.

                                That is exactly the part that specifically confuses me about this drug is 'The Charity' themselves. You stated they were invited to share their research, but withdraw before the event.

                                Why ?

                                They have a drug that those taking it 'state' is slowing down their progression effectively. So who, and where are these brilliant doctors, and scientists that prefer to remain in the shadows, but generously give out their drug for free to only those that can obtain access to it ?

                                If The Charity is seeking funding to continue producing their drug, why are they not stepping forward, and telling the entire medical field, and ALS/MND community what they have discovered ??? Wouldn't the 2018 Symposium be their platform to do this? yet they declined to show.

                                It makes no sense to me????

                                I also find it very sketchy that these random forum members on this thread just pop up here to only 'promote' this drug. These forum members may protest that's not what they are doing, and are only here to share their knowledge, and experience with this drug, but the reality of it is they are here peddling a drug that no one has access too, and they 'claim' is working. I too would have to agree that is cruel, and selfishly unjust, and unfair to those living with this illness.

                                CCxx
                                Last edited by ccinjersey; 30 August 2019, 16:42.

                                Comment

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