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    ALSUntangled has published their review of RCH4.

    https://www.tandfonline.com/doi/full...1.2019.1675282
    Last edited by Ellie; 20 November 2019, 17:04.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

    Comment


      Thanks for the link Ellie;

      Their report is very short, probably due to them not obtaining much if any info from Rch4.

      The report does say:- The website does mention some side effects in patients on RCH4 that
      were later determined to be due to “counterfeit edaravone” (6). Exactly what these side effects
      were, or how this determination of causality was made are not specified. Of concern, one website
      mentions 2 cases of anaphylaxis on RCH4, one of whom died

      And the conclusion:- Conclusion
      RCH4 is an unlicensed, unapproved product
      reported to “probably slow the progression of your
      ALS” (6) on a website. The only peer reviewed
      publication we found on this product is a single
      abstract which was never presented at a meeting.
      We have been unable to determine RCH4’s structure or chemical class, and its purported mechanism is one that has never been shown to be useful
      in treating PALS before. We have been unable to
      independently verify RCH4’s reported efficacy or
      even safety. Thus, at this time, we cannot advise
      PALS to use this product. We hope the proponents of RCH4 will someday present more useful
      information about their product at a scientific
      meeting or in a peer reviewed publication.
      We believe that regulatory oversight is important for optimizing patient safety on experimental
      drugs, and that independent peer review and replication are fundamentals of good science. Caution
      should be exercised around any product being
      developed and in clinical use without these safeguards and fundamentals in place.

      It appears that they've found out pretty much what we know and explain a few other things. So they're in the dark as much as we are.

      I hope I scanned it correctly.

      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


        Thanks Terry,

        Supports my research results too. Hopefully this document (thanks Ellie) will give pause for thought.

        Kind regards

        Chas

        Comment


          Mum continues .to do well on RCH4. Her latest ALSFRS-R charts
          Nov 19.png
          Nov 2019.png

          Comment


            Speaking as a retired GP and a user of RCH4 I am qualified to comment on the ALS Untangled review.

            I think that it is unfortunate that Terry has been selective in copying (above) portions of the review some of which are totally untrue. But she (?) cannot be expected to know the unsavoury background conduct of the MND establishment elite. Therefore the review appears plausible to Terry. And that is the problem, it appears plausible to all PALS.

            It is clearly not an objective document but it is biased in the extreme, and in most part, demonstrably untrue.

            The RCH4 charity response is revealing in that it lifts the cloak off the vested interests, back stabbing and I am sad to say, the egocentric medical profession involved in research. This review is a disgrace and an embarrassment to my profession.
            These are the people who destroyed the charity by untruthfully labelling them a scam thus depriving PALS who want to try RCH4 the opportunity of doing so.

            The detailed comprehensive response from the charity who supplies it free of charge should be studied very carefully as it is a revelation as to what happens to the millions given by PALS and the public for MND research. One may check for oneself the accuracy of every item on the RCH4 people`s reply.

            Study this and then come to your own conclusion as to the motives or fairness of the authors of the so-called review.
            It really is worth studying.
            http://www.als-new-drug.com/alsuntangled-review

            This cartoon from the response caught my eye. It says it all about those involved in MND research.
            The caption says
            We don`t want to believe you because we get paid to continue what we are doing
            NIH.png
            Last edited by originalthought; 19 November 2019, 18:33.

            Comment


              Thanks for the link Original Thought. A good read and worrying about the apparent biased and dishonest power brokers in scientific circles, immoral. 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


                OriginalThought

                I remain perplexed on one very questionable issue since the start of this thread. Why is it the ‘Charity’ does not come forward, state who they are and what they have discovered, and present it to ALS/MND community. If they are doctors, scientists and researchers why do they remain hidden with their discovery?? Wouldn’t that eliminate much if not all of the skepticism, and confusion surrounding this drug ??

                You state that you are a GP yourself so maybe you have insight as to why they remain silent when they have discovered a drug for this illness that those taking claim is effective??

                I’m also curious to know if millions of dollars are going into research for a cure for this illness why do you state “the unsavory background conduct of the MND establishment elite” are you stating this group is deliberating trying to sabotage a real cure for this illness ??

                It seems plausible to me as well, and as you have stated many others because ALS Untangled seems more straight forward, and forthcoming with their information or lack of it pertaining to this drug then the mysterious ‘Charity’

                CCxx
                Last edited by ccinjersey; 20 November 2019, 02:02.

                Comment


                  Lynne, you are correct!

                  Truly an eye opener and worrying. When I was in practice, although not a specialist, I participated in the role of Investigator for a number of trials. What became apparent to me was in the case of rare diseases, they became dominated by a few key opinion leaders (KOL`s) to which everyone defers.
                  The KOL`s did not welcome anything new that they were not part of and inevitably tried to suppress it, as the new development may threaten their professional status.

                  If someone publishes a paper saying ABC, then afterwards when some new evidence appears that proves instead that XYZ is actually correct, every effort will be made to suppress or deny XYZ. Human nature, vested interest. My patients were never aware of any of this background to research. Truth be told, I was not either as a young man in early career.
                  __________________________
                  It may be best if you did not disturb yourself further as you have already made up your mind that RCH4 is nonsense and nothing will change your mind. Whereas you are entitled to your opinion which I respect, I can assure you from personal experience that your conclusion is misguided.

                  I know that you have not bothered to spend the hour required to study the charity peoples reply to the ALS Untangled review.
                  http://www.als-new-drug.com/alsuntangled-review

                  How do I know that?
                  Example, you asked "Why is it the ‘Charity’ does not come forward, state who they are and what they have discovered, and present it to ALS/MND community......etc...........??"

                  They did.
                  The journals refused their papers, the MND conference selection committees refused their papers, and the major ALS research organisations were offered the whole development as a humanitarian gift but they were not interested.
                  So, if you had studied the charities reply to the ALS Untangled review, you would not have asked those questions which are all answered, together with the evidence and proofs.
                  Anyway, all the best to you and thanks for your interest.
                  Last edited by Admin_MND; 22 November 2019, 15:07. Reason: Names and content removed at the request of forum members.

                  Comment


                    Originally posted by Lynne K View Post
                    Thanks for the link Original Thought. A good read and worrying about the apparent biased and dishonest power brokers in scientific circles, immoral. Lynne
                    Hi Lynne,

                    Please don't take the rebuttal you read as being unbiased.

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

                    Comment


                      OriginalThought

                      This topic doesn't 'disturb' me as you presume, what I find most interesting is that these questions still remain unanswered??????

                      Believe what you need to believe OriginalThought, all the very best to you as well

                      CCxx

                      Comment


                        My life is being extended by RCH4 and you must forgive me for saying that I view your incessantly negative comments as endangering my life expectancy and that of others, who naturally feel the same.

                        As to your comment to Lynne, the charity reply to the Untangled review is obviously biased in the extreme and some of the review is proven to be untrue.
                        Any reasonable reader can see this.

                        But the fact remains that you haven't bothered to study it and you don`t care that your sniping is hurting other patients. Readers here can see that. Whereas everyone here has genuine sympathy for your situation (and faces the same themselves), but you are damaging your own image by continuing with your remarks. They are unhelpful for all PALS including yourself.
                        _____________________________
                        if you had spent the hour needed to study the detailed reply to every point in the Untangled review, you would stop asking these same questions ad nauseam because they are answered there.

                        Thank you all
                        Last edited by Admin_MND; 22 November 2019, 15:08. Reason: Names and content removed at the request of forum members.

                        Comment


                          OriginalThought

                          I can’t imagine anyone who has been affected by ALS\MND personally or educated themselves enough about the illness could lack empathy, and compassion for those living with it and impacted by it.

                          If you, and others feel 'endangered' by forum members here, maybe best not to post aggressive and hostile comments on this thread towards those who only are seeking knowledge to unanswered questions

                          That being said, I wish you and those taking this drug much success.

                          CCxx
                          Last edited by ccinjersey; 21 November 2019, 02:39.

                          Comment


                            Hi Original,

                            You still continue to be agreesive towards long standing members of the forum. Even the report is aggressive especially written in red.

                            I would never say that Ellie hadn't bothered to study things but you could say that for me.

                            You must be a educated man (unlike me) and as such you must know that the best way of promoting something is to be nice and answer simple questions in a straight forward way.

                            As I have said before, if this was done from the beginning it would have been a different story.

                            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


                              Hello again
                              _______________________________

                              ccinjersey, You made the following comments:

                              I’m also curious to know if millions of dollars are going into research for a cure for this illness why do you state “the unsavory background conduct of the MND establishment elite” are you stating this group is deliberating trying to sabotage a real cure for this illness ??

                              Yes.
                              They are trying to sabotage a new drug which dramatically extends life expectancy (by threefold) for many (85%) who take it.
                              A cure does not exist.

                              Again, if you had spent the hour needed to study the detailed reply to every point in the Untangled review, you would see the proof of this and would stop asking these same questions ad nauseam because they are answered there.
                              ______________________________

                              Terry you said

                              You still continue to be agreesive

                              No Terry, I am not aggressive, only state true and verifiable facts. If you do not wish to check facts for yourself, please do not consider facts to be aggressive.

                              towards long standing members of the forum.

                              Forgive me for my ignorance. I did not know. Apparently being of long standing bestows comprehensive knowledge.

                              Even the report is aggressive especially written in red.
                              Now you accuse the charity of being aggressive as well. I heard rumours that Santa is aggressive also. Therefore it must all be true.

                              With respect, your statement is silly. For ease of reading, the ALS Uutangled untrue allegations are in black, and the charity response is interspersed in red.

                              This is stated in the document - but you never studied it either.

                              you must know that the best way of promoting something is to be nice

                              I am not promoting anything. Neither are other RCH4 users here and elsewhere. They only offer personal experience of the drug.

                              and answer simple questions in a straight forward way.

                              If you have questions about a bus, do not ask the chap at the bus stop but ask the driver. In this case, study the RCH4 web site and their Untangled response where everything is answered.
                              But that is far too much expect of people as it would take them couple of hours. It is easier to whinge that nobody is spoon-feeding bespoke information on demand.

                              Folks, this is not aggressive, just simple, true, facts. Thank you.
                              Last edited by Admin_MND; 22 November 2019, 15:11. Reason: Names and content removed at the request of forum members.

                              Comment


                                Originally posted by originalthought View Post

                                Forgive me for my ignorance. I did not know. Apparently being of long standing bestows comprehensive knowledge.
                                Dear Original;

                                Once again you have been nasty and aggressive with your replies to people.

                                I am one of the longest and most prolific forum users but I don't think that I've said that I am a "Font of all knowledge".

                                Please look at my post as I'm probably uneducated compared with you.

                                I have known of two "True Forum Members" that have taken Rch4, one had a reaction to the injections and stopped and the other is dead.

                                What I mean by "True Forum Members" is ones that have joined in and have a history. We can almost trust what they say because of that.

                                You and most of the others that have posted pro Rch4 have not got any history so we don't trust you. In-fact most of the names could be RED, too.

                                Just saying.

                                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

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