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    Dear Terry,
    Did I ever say that I am from Dublin?
    No, far away from Dublin!
    What is you point?

    Comment


      Thanks Ionel;

      The reason I said that I know you're not from Dublin, is because originalthought said that no-one has applied for the drug from there. I was also being a bit sarcastic, to show my point.

      My point is one reason why this thread has failed. Most, if not nearly all of you that have posted positive comments and graphs etc, have not posted where they are from.

      That is why I said that, I'm afraid by most of you being so ambiguous, having strange names, not really talking to each other and showing similar looking results, etc, makes any claims very dubious.

      We have had many countries post on the forum but I can't remember any from Romania.

      Welcome to the forum.

      To me, it would make good sense to stop this thread and start a new one with people saying who they are etc. Saying the currant situation with you's and the availability of the drug to you and others like me.

      It would be even better if others that had problems and stopped would post to get a bit more of a balanced thread.

      Just my uneducated thoughts.

      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


        Originally posted by originalthought View Post
        Again thank you Terry. You said

        If the company, (group) contacted you, why don't they have a presents here in a passive form, they must be reading it.

        Please read my post. I said I contacted the charity, not the other way around. As nobody bothers to study the information on web sites or in postings before they hit their keyboard, I do not propose to say any more. It is clear that nobody wishes to hear about anything that is safe and is efficacious and resents PALS exchanging information which is the objective of a forum. Extraordinary in view of the fact that to date there has been no other effective treatment for MND.
        I previously offered a link (above) to a Utube documentary which appears to confirm that this attitude is universal.

        Thank you all.
        I have tried to find where the 'charity' is registered in the US - no luck so far. Perhaps you could help me out here?

        Kind regards

        Chas

        Comment


          Hi Chas;

          This thread has been running for well over 2 years but we still don't know the basic facts. I would have thought that info would be one of the first things posted. We are not asking for the formula details.

          It's all very worrying.

          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


            Hi,

            Speaking is a charity expert of some long-standing the designation of "informal charitable organization" is meaningless.

            I take this from https://rch4als.com/rch4-charity

            An organisation is either charitable or it is not according to the terms of the 2016 UK Charities Act.

            Such an organisation needs to register with the Charity Commission if it earns more than a certain amount of money each year - £5000 if unincorporated, straight away if it is incorporated.

            Any registered organisation needs to quote its proper name and registered numbers on its website to meet the requirements of the regulations.

            Warmly
            Warmly


            Andy

            ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

            "Things turn out the best for people who make the best of the way things turn out"

            Comment


              Hello nunhead_man. We must rejoice that we have an expert on charities contributing here.

              However, the web site you refer to above has nothing at all to do with the RC Charity. It is a site run by PALS who take RCH4.

              It is imperative to carefully study the Internet before making postings. Very few of us do, as evidenced in this thread.

              The Internet is a two-edged sword. We need to be careful what we say as information is available to cross reference. Whereas one can understand your angst, it is unacceptable to attack an innocent charity, the only one to have given anything to us for free. At that time, they were accepting anyone who asked them for help. They could not provide you with RCH4 as you did not have a written diagnosis confirming MND.

              I previously said that I would say no more, however the unwarranted and uninformed hostility from everyone I cannot let pass.

              Comment


                Originalthought

                That is an extremely condescending comment to make. People here are dealing with enough on their plate and don't need to listen to that kind of attitude.

                If you can't take the heat get out of the kitchen. People here are entitled to their opinions and to ask questions about the so called 'Charity'. Maybe its about time the 'Charity' are the ones who man up, and show up, and get behind their wonder drug so all this controversy over who they are and their drug could be put to rest.

                I really hope mnda freezes this thread, it really serves no purpose other than upsetting people.

                Sincerely
                CC xx
                Last edited by ccinjersey; 6 September 2019, 15:45.

                Comment


                  Originally posted by originalth
                  ought;92267
                  Hello nunhead_man. We must rejoice that we have an expert on charities contributing here.
                  I find this comment contains;-

                  8.4.1 offensive and inflammatory wording

                  8.4.3 and also abusive and causes needless anxiety;


                  8.4.4 It violates good morals and practice;

                  Terry
                  Last edited by Terry; 8 September 2019, 12:59.
                  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 everyone, my father has been taking RCH4 for the past 18+ months.

                    I have reported about my experience quite a bit and documented the treatment regimen on the PatientsLikeMe site. You can view my profile there here if you wish to read further: https://www.patientslikeme.com/members/meffordh

                    The reason I am posting is because, like many, I read every forum thread in existence about every treatment modality I could find with any possibility of efficacy when I found out what the progression of this disease looks like for most people... and the negativity I found throughout many threads on many treatment modalities nearly dissuaged me from trying to obtain the drug from the charity. Thankfully, enough people posted enough messages and enough witnessed the efficacy of treatment that the positive evidence was insurmountable. Here's a visual I pulled from patients like me showing the efficacy of some treatments, the dark green in the bar chart on the left is the stated % of people that perceived the treatment efficacy as "Major", as the bar gets lighter in color, it goes to Moderate, Minimal, etc. This is real patient accounts of their personal views of efficacy. The image shows, 88% or (100 of 123) treatment evaluations show major efficacy for RCH4, compared to 2% for Edavarone (1 evaluation of 66) and 2% for Riluzole (16 of 420) at the time of this writing. I am writing only to tell those who read it, that my view and certainly my father's view is exactly what you see. This is based on my father's rate of progression, which is also noted in the second image below, as he's only progressed -1 point on the ALS-FRS scale in 18 months he's taken RCH4.

                    I hope this information gives the drug a chance at being available to all in the future, sincerely.

                    PLM_Evals.jpg

                    meffordh-rch4-aug.jpg

                    Comment


                      ALSFRS - R plot

                      Attached is a plot of the ALSFR-R score of an MND patient taking Riluzole. It looks rather similar to the one meffordh just posted.

                      Doug
                      Attached Files

                      Comment


                        Ooh, how wonderful Meffordh.

                        Please tell me where I can get RCH4 so I don't die so soon.
                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

                        Comment


                          Originally posted by meffordh View Post
                          Hello everyone, my father has been taking RCH4 for the past 18+ months.
                          Hi Meffordh;

                          Sorry to hear that it is your father that has Mnd because from your earlier post I thought it was you. I really hope that someone in your family has Mnd, as we all do. Pleased to hear that he is doing well on RCH4.

                          But another ambiguous post by someone unknown, who does not live anywhere doesn't do RCH4 any credit at all and just puts more doubt on this whole thing.

                          Ellie, I never thought you would ever go so low as to slip into sarcasm, LOL.

                          Love Terry
                          Last edited by Terry; 7 September 2019, 13:09.
                          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


                            This is intolerable. Moderators please note.

                            Ellie said
                            Ooh, how wonderful Meffordh.

                            Please tell me where I can get RCH4 so I don't die so soon.

                            This is unworthy of you Ellie. For two years you have made hostile postings about the drug and the charity who supplies it. You now ask where you can get it. You knew exactly where two years back and you did not ask for it when the charity had funding and were accepting everyone without question, provided that the patient had confirmed diagnosis, their doctor’s permission and some other paperwork such as patient informed consent etc.

                            ccinjersey said
                            That is an extremely condescending comment to make. People here are dealing with enough on their plate and don't need to listen to that kind of attitude.

                            If you can't take the heat get out of the kitchen. People here are entitled to their opinions and to ask questions about the so called 'Charity'. Maybe its about time the 'Charity' are the ones who man up, and show up, and get behind their wonder drug so all this controversy over who they are and their drug could be put to rest.

                            I really hope mnda freezes this thread, it really serves no purpose other than upsetting people.

                            cc: Kindly refer to my comments below. Your above statement proves them right. You are out of order.

                            Terry said
                            I don't think that Nunhead has said that he is a "Expert" in any field let alone charities.
                            Yes, he did.

                            I find this comment contains;-

                            8.4.1 offensive and inflammatory wording

                            Absolutely nothing offensive or inflammatory. The person only said how good it is to have an expert on the forum and pointed out the truth that contributors fail to study the internet and the information available there before they start typing uninformed posts. Those who shout that there is no information fail to study the charity website. Takes maybe a couple of hours. In my opinion, although their site is not very professional in presentation, their welcome page is the best and most comprehensive source of unbiased and comprehensive information on the disease, particularly for those who are newly diagnosed.

                            8.4.3 and also abusive and causes needless anxiety;
                            Terry, There is no abuse. May I say that your uninformed hostility and that of ccinjersey and others is causing terrible anxiety to those of us who are relying on the continued availability of RCH4.
                            Posters here say it is “all very worrying”, “very distressing”, “upsetting” and so on. They do not take the drug, and some are not even a PALS themselves. About two years ago someone started this thread as a place to exchange information with others who take the drug RCH4. Then everyone came crashing in shouting “SCAM”, making untrue allegations and innuendos.
                            Terry, you (and others) keep referring to mystery ambiguous people. There are numerous RCH4 users both here and elsewhere, who have elected to go public and waive their right to anonymity having invited anyone to contact them and they are willing to provide their clinical files and even to meet up in person. Just one example: “mndmarlon” posting here on July 2nd. 2018. So everyone, please either contact them or stop making the `unknown` allegation.

                            8.4.4 It violates good morals and practice;
                            Examine the post above by ccinjersey.
                            The lady has made 31 hostile postings on this thread doing all she can (like others) to get rid of the only drug that is efficacious in this disease. She does not suffer this disease and face death – but we do.
                            She has even gone to the trouble to comb the internet and re-published the totally untrue allegations of an obnoxious internet activist and troll, Eric Valor, who collapsed the charity after he published the catastrophic libellous headline NEW-DRUG NEW-SCAM without any evidence, without doing any research, without contacting the charity or even anyone using the drug. Over all the years, nobody using the drug has said one word on any blog or forum worldwide against the charity.

                            These thread activities by posters are wholly immoral as they threaten our lives by undermining the drug we rely on. It is those who continue this witch hunt against the charity and collapsed their funding who need to examine their conscience.

                            People repeatedly ask why the drug has not been approved. A million Dollar cost. Where is the money to come from now after all the damage done?

                            Doug said
                            Attached is a plot of the ALSFR-R score of an MND patient taking Riluzole. It looks rather similar to the one meffordh just posted.
                            With due respect, for goodness sake that comment is nonsense. One Riluzole patient. There are hundreds of RCH4 patient reports.

                            12 published papers about Riluzole in The Lancet show no slowing in clinical functionality decline (the ALSFRS-R score), which is undoubtedly the most important aspect because slowing of the score decline means longer life expectancy. https://www.thelancet.com/journals/l...091-7/fulltext Riluzole extends life for some by 12 weeks (8%).

                            According to hundreds of worldwide patient reports over years, RCH4 extends life by some 270%, and indefinitely for 5% of patients.
                            Someone pointed out (a recent post above) and posted a screen shot of the independent reports of efficacy of both RCH4 and Riluzole on PLM which is a stand-alone independent website run by United Health, a major public insurance company in the USA. RCH4 a scam? Impossible.

                            “Major efficacy”: RCH4 88%. Riluzole 2%.

                            Say no more. QED.

                            Having read through the postings here, as far as I can see, every question (many repeatedly asked) is answered on the charity website. If you want answers, their site must be carefully studied.

                            It is unbelievable that the only effective drug which was scheduled to be available to everyone worldwide by now has been consigned to the dustbin of history by PALS themselves by destroying the funding for it. Attacking a charity is beyond the Pale. How many here have given their own money directly to another PALS who they never met?
                            Thanks to all the nay-sayers and trolls, the charity now has no money to accept any new people. The MND community have not only shot themselves in the foot, but us as well.

                            Comment


                              Still can't find a link to the Charity registration in the US - can you help me out with that Doblett?

                              Chas

                              Comment


                                Originally posted by Doblett View Post

                                Terry said
                                I don't think that Nunhead has said that he is a "Expert" in any field let alone charities.
                                Yes, he did.
                                Thankyou for pointing that out Dobett,

                                I was wrong and have amended my post. I apologise for the error.

                                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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