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    WARNING, RCH4 Charity Web sites

    before you go on any of their links or web pages etc, WARNING

    Please be aware that your information and details could be passed on if you go onto their links and web sites.

    They have used the information gathered from their web site or links to use against one of our members, showing the dates, times and length of time they have visited their pages. This is not the first time it has been used in a belittling and nasty way.

    I'm sure this would be against any reasonable rules and general good internet practice.

    Best wishes, 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.

    #2
    Thank you for sharing that information Terry.

    CCxox

    Comment


      #3
      Hi Terry, I clicked on the link that the 'ex doctor' put up. I can't remember his forum name just now, maybe 'onein400' or similar. That was a few days ago and before your post. I didn't input any details, just read an account of the trashing of RCH4 's doctors reputations by big pharma scientists and their counter arguments. I hope that they didn't leave any spy ware on my phone. 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


        #4
        Hi Lynne;

        I don't think that he would do that but he could have your phone or computers internet address. I don't think that you have anything to worry about with him.

        It's just concerning that he is taking confidential information with restricted access and using it elsewhere. It is unscrupulous behavior.

        Onein300 is a completely different person who I trust, I don't think that he has any input on the Rch4 thread

        Love Terry
        Last edited by Terry; 23 November 2019, 22:20.
        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


          #5
          Ok, thanks Terry. 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


            #6
            Hi Terry. I've just looked through previous messages. It was the links put up by originalthought (and not onein300 who does a great blog and gives links to smashing information) that I read all of, taking me ages perhaps an hour. What struck me was that big pharma had ostracised the RCH4 community, in a holier than thou way. I don't say that the RCH4 community are totally correct in their habits. There's no published research in the traditional sense, and only, as far as I can see individual peoples records.

            In a perfect world big pharma would offer the small charity involved in RCH4 to put this drug through a traditional trial, phases 1,2 and 3. But they aren't going to do that are they? That's to do with power, money and reputational concerns, which is a sad state of affairs. 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


              #7
              Hi Lynne;

              I think that the RCH4 community ostracised them selves here by failing to answer simple questions and failing to build up any trust by talking about how Mnd has affected them, along with how it started.

              It is a shame because if they had done it differently, Cc's friend who was extremely rich would have benefited from it and she along with me would have contributed towards it. I'm sure that others on this forum would have taken it too, along with me.

              But many of us smelt a rat.

              We are desperate people, many of us will try anything like "Stem cell treatment" all those places promise a cure too but none have succeeded in doing it.

              Just hypothetically, if I come across a tablet that I said improved me and said it's free via a charity. And other people made up by me also said the same . (not real people) Then I said that it is too expensive to put through trials etc.
              Would you not want to support that charity. The trouble is that I won't disclose that they are just cheep vit C tablets from the pound shop. My get rich quickly idea.

              I'm not saying Rch4 are doing the above but there's so many similarities. Just saying.

              They were and are their own worse enemy IF they're for real.

              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


                #8
                Terry, we are all eager to get some treatment that works but have to be cautious indeed. Onein300 put a link to research done about 4 years ago on his last but one blog. I only read the research today and it was very clear that 25% of ALS sufferers have plateaus where they don't deteriorate for different lengths of time, I think most are short. A further smaller percentage, I think 13% recorded improvement. The conclusion is that care ought be taken by researchers of treatments for MND /ALS that what they are seeing is more than the statistical variation in deterioration. So a good deal of scepticism is healthy until it can be proven that more than 25% plateaus and more than 13% improve on the treatment before they get all our hopes up that they've found a 'miracle cure.'
                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


                  #9
                  Hello everyone I am a user of rch4 given me by the charity.

                  I would make a couple of comments. Every web site we look at records everything (but not who we are) and the law says that every web site must tell us that it records information and if we dont want this we must leave the web site or "opt in" to agree.
                  On some sites we can see visitors to that site in real time.

                  Lynne said "I only read the research today and it was very clear that 25% of ALS sufferers have plateaus where they don't deteriorate for different lengths of time, I think most are short." I believe it to be 2 - 3 months before resuming again. From their web site the average for rch4 is (I think) 30% of their PALS stabilise for 6 months or longer and 50% for 4 months or longer. In my case since starting on it couple of years back, staying stable so obviously I believe it is correct if not an understatement.

                  I am shocked to learn that the MND Association had no interest in rch4 when it was offered to them as a humanitarian gift a few years ago, I hope someone will ask them about this at the ALS convention in Perth this week.

                  Comment


                    #10
                    Hi Terry,

                    I'd be interested in what data you think the RCH4 suppliers are unscrupulously using. Let me know and I'll take it up with them. It does not sound quite right with me. I'm sure they get data like countries or where referred from, as most standard ISP packages will supply that data with a hosted website.

                    Considering the help they give my wife with no charge and the help and advice they give us, I find it hard to believe there is something untoward going on.

                    My wife has been receiving RCH4 from them for nearly 4 years now and progression is still halted, so if there was something devious going on I'm sure they would have tried it with me by now.

                    Thanks
                    Marlon

                    Comment


                      #11
                      Marlon,

                      The RCH4 website gave out personal data pertaining to my usage of their website to another Forum member, allegedly taking RCH4, including dates and durations of when I accessed the website, in clear violation of Data Privacy Regulation legislation.

                      The member then proceeded to publish this personal data on this public Forum, in clear violation of Data Privacy Regulation legislation.

                      Originally posted by mndmarlon View Post
                      Let me know and I'll take it up with them.
                      No need to, the relevant Authority has been notified.

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

                      Comment


                        #12
                        Ellie, first time hearing this. First I find it odd that moderators here do not find this topic unjust according to their recent blockage of all new comments or topics regarding RCH4.

                        Second, most virus software nowadays contain BPN and VPN features that will block others from seeing your IP address. It works for me. Also, there is no law against obtaining an IP address or reporting to random persons time that IP address has spent on a website or what section of the website was visited.

                        Comment


                          #13
                          I replied to Marlon’s query simply to clarify the subject of this thread, so there would be no ambiguity whatsoever as to its subject matter.

                          THIS TOPIC IS NOT OPEN FOR FURTHER DEBATE.
                          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                          Comment


                            #14
                            ALSFRS-R.png

                            It has now been over 2 years mum commenced treatment with RCH4. She has great success in that she remains stable with very little worsening of her symptoms and no side effects. Much gratitude and thanks to the Charity that provides ongoing support and advice all free of charge.

                            Comment


                              #15
                              We provide the forum to encourage supportive, informative and useful conversations for people living with and affected by MND. Occasionally subjects may lead to robust debate and opposing opinions. Our view is that this thread has become so polarised that it is no longer serving anyone’s interest and is only causing increased distress and anxiety amongst all contributors. As such, we will be closing this thread to any further entries as we feel this is the best way to try and break the current deadlock. The thread content will remain available to view.

                              We would discourage any new threads being started in its place as it is likely that this would end in the same position. We will review any threads that focus on the same subject and may close them down to avoid the current issues being repeated.

                              If you have any comments or questions please contact [email protected].
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