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    Originally posted by Barry52 View Post
    Hi Chrisp,

    Rch4 has not undergone the trials necessary to get approval in the USA and Europe.

    Barry
    Please read their website completely as all your questions will be answered. It has gone through Stage 1 here in the states and passed. Contact the Charity with your questions as they will respond in detail.

    Www.als-new-drug.com

    Comment


      Originally posted by WeirdTim View Post
      Please read their website completely as all your questions will be answered. It has gone through Stage 1 here in the states and passed. Contact the Charity with your questions as they will respond in detail.

      Www.als-new-drug.com
      Regardless of what you post Tim the drug does not have regulatory approval in any country.

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

      Comment


        Barry,

        RCH4 has Orphan Drug Designation which I believe means that it is approved for use with the acceptance of a medical practitioner

        The Orphan Drug Designation program provides orphan status to drugs and biologics which are defined as those intended for the safe and effective treatment, diagnosis or prevention of rare diseases/disorders that affect fewer than 200,000 people in the U.S., or that affect more than 200,000 persons but are not expected to recover the costs of developing and marketing a treatment drug.

        Marlon

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          Hi Marlon,

          Yes I am aware of that but I don’t want pals in the Uk to get false hope of a cure when there is no realistic prospect of them obtaining the drug.

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

          Comment


            I will take the risk although the 19 Folks on patients L M have found no bad reactions only good.
            Last edited by TIANDB; 12 July 2018, 06:58. Reason: ADD

            Comment


              Good Luck to you TIANDB, I hope you can obtain the access you need, and get the results you seek from this medication.

              CCxox

              Comment


                Hi Jeremy;

                If this is what you are asking about, post here and do the same on other relevant threads.

                Hope it helps, 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


                  Andy,

                  My wife has been on RCH4 more than 3 years and the charity has always been courteous, responsive & supportive. In my opinion, it is unfair to target people who themselves pay for many peoples treatment. Just look at https://www.patientslikeme.com/treat...28469#overview

                  Like weird tim said, we don't want to lose them.

                  Also, I read your comment about criticizing them for suggesting you gain weight. That was likely suggested because multiple studies have shown that a higher body fat content equates to a longer life with ALS. There was a mouse model study done about 4 years ago, or so, sorry I tried finding it via google and could not, that showed overweight mice with ALS lived 45% longer than those of a normal weight. So, that's why. I understand you have other health concerns, but their advice was not bad advice, especially considering that ALS will override all other health issues, eventually.

                  I wish you the best of luck.

                  Comment


                    Had my first ALS clinic today since starting RCH4 three months ago. The docs were happy with no measurable progression. They now are having me do some different exercises to maintain or maybe improve what I've lost prior to RCH4.

                    Comment


                      Hello
                      Are they any plans for Rch4 to be trialled in the UK?
                      Chris

                      Comment


                        Hi Chrisp.. Worth to view all News on RCH4 on all the forums including older locked threads. They would like to increase patients with Some honest funding I presume ? Take Care: " Secrets and Lies ? " it seems to me after reading all those threads ( The Lies not from the suppliers IMHO ) :: TIANDB::
                        Last edited by TIANDB; 27 July 2018, 11:24. Reason: ADD

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                          Hey TIANDB,

                          It is funny and incomprehensible, is it not, Rch4 you cannot try though you want to, because of the 'evidence based medicine medical system' in the UK is barring you from trying it, while as a nation we all are as a heading for a Brexit that is not at all evidence based and will affect every individual person in the UK, while any impact assessment by a qualified civil servant, or institute indicate a 'situation worse off'.

                          I just wish the medical profession have a 1% of that optimism we have as a country to have a better future for all of us after Brexit and allow those who willing to try the Rch4, since their objection or lack of support for taking the stuff (if one wish to have it) is not at all evidence based. Sorry if I caused any offence to some, but the obvious has to be stated.

                          Jay


                          Originally posted by TIANDB View Post
                          I will take the risk although the 19 Folks on patients L M have found no bad reactions only good. I saw somewhere ? >4000 Doses 250+ Persons
                          No side effects 80%+ good results . ( Not sure where Don't ask )
                          I haven't a doctor to permission me, I am on one slippery slope down ! after months of research this is the only one that Shines
                          and shines brightly to me. My posting will likely end in 2018 ? no few years for me or slow progression. My consultant has my email plea,
                          he is away until next week and has never answered my past emails over the last few weeks all respectful and relevant.
                          I emailed my previous consultant No reply and no good history with replying there either.
                          I have emailed 4 Harley street Clinics, No reply. 4 Private clinics in Birmingham, No reply. Two other private Neurologists, No Reply.
                          Ha Ha Ha Ha I am sill trying. A lottery win would go to RCH4 ( I have never won much on the Lottery )
                          Would they go for trials ? most probably not ? They would treat more sufferers and the PLM site would be flooded with similar amazing results. I wish for Miracles for us all.. rant over
                          I got my 4 Wheeled walker Today Whooooo ( Sark ) TIANDB

                          Comment


                            Hi jay. Awaiting news from my professor Consultant, He I hope has read my e-Mail pleas and with all his intelligence ? I am sure he can produce a sentence or two for my life benefit ? I will update if news. Take care. 5 Pm already and no reply I presume not even a looking at it only one sentence. Grrrr
                            Last edited by TIANDB; 27 July 2018, 11:25. Reason: ADD

                            Comment


                              Originally posted by TIANDB View Post
                              Hi jay. Awaiting news from my professor Consultant, He I hope has read my e-Mail pleas and with all his intelligence ? I am sure he can produce a sentence or two for my life benefit ? I will update if news. Take care.
                              Good luck to you mate!

                              Comment


                                Yes, best of it to you!

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