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Thread: Rch4

  1. #351
    Forum Member Ellie's Avatar
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    Quote Originally Posted by Doblett View Post

    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.
    On the contrary Doblett - that was said in good faith, I would love the opportunity to take RCH4.

    Quote Originally Posted by Doblett View Post

    How many here have given their own money directly to another PALS who they never met?

    Well I have - multiple times to multiple people - and will continue doing so. I know for a fact that many other Forum Members do so too.

  2. #352
    Forum Member Terry's Avatar
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    Quote Originally Posted by Ellie View Post
    Well I have - multiple times to multiple people - and will continue doing so. I know for a fact that many other Forum Members do so too.
    I have too, Ellie,

    Sent money, equipment and hopefully loads of moral support to others that I have never met.

    I have also received equipment from others that could have sold it. I have never received monies from others here that I have not met but I have given up hope and any would be gratefully received.

    Love Terry

  3. #353
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    Terry, thank you for your apology which is very honourable of you.

    Sportingmac, I wish you well and I am sure that the sentiment is reciprocated by you. We are in the same situation i.e., both facing a life shortening condition for which there was no solution at all until now. That solution is being, and has been, destroyed by others who have never taken the drug (or who are not even a PALS) which is not a cure but extending life more than anything seen before, for 86% who take it either doubling or trebling life expectancy. I trust that you can appreciate the anxiety that the end of its availability causes us. The charity witch hunt started about 3 years ago, yet nobody talks about the real scams like ALS Worldwide.

    You ask for a link to the charity registration in the US. As far as I know nobody said anything about the US.
    However, I would ask you again (and everyone else) to please study all of the charity site where the never ending repeated questions here are answered.

    From their site:
    "The sponsors of this web site are a voluntary group of retired professionals from different countries. Based in Europe, they have no connection with any other entity, charity or corporate, and have no external financial support. Being privately funded and the public have never been asked for money, there is no requirement to register ​​the charity and incur the associated administrative costs.
    Their humanitarian objective is to bring a potentially new horizon to those affected by ALS - irrespective of their financial status."


    I must apologise to some people who have sent me messages but I cannot figure out how to display them. I am really sorry.

    Edit. Ellie, you said
    On the contrary Doblett - that was said in good faith, I would love the opportunity to take RCH4.

    Sorry Ellie, you had the opportunity. Refer to my post at 1:49 today 08/09/19.
    And as to sending money to strangers, nothing can compare to the $millions of drug the charity people gave from their own pockets over the years before the witch hunt (accusing them as being criminals, drug runners a scam etc.) against them killed them off. Little wonder they are extremely angry with us and gone.
    Last edited by Doblett; 8th September 2019 at 15:52. Reason: Addition. Reply to Ellie

  4. #354
    Forum Member Ellie's Avatar
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    Quote Originally Posted by Doblett View Post

    And as to sending money to strangers...
    You asked a specific question Doblett:
    Quote Originally Posted by Doblett View Post
    How many here have given their own money directly to another PALS who they never met?
    to which I replied that I had, multiple times to multiple people. I didn't realise there was a wrong answer, my apologies.

  5. #355
    Forum Member Terry's Avatar
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    Quote Originally Posted by Doblett View Post
    Little wonder they are extremely angry with us and gone.
    Hi Doblett;

    You say "They",

    Who are they?

    What Pharisaical company is producing it?

    Who are the doctors and other specialists behind the drug?

    Which country makes the drug?

    What country runs the charity?

    Sportingmac has asked twice recently, Still can't find a link to the Charity registration in the US - can you help me out with that Doblett?

    You don't answer his question or what is implied by it. How much easier it would be to say, It's not a US charity but one form Australia and here's a direct link. By the way Chas, the drug is no longer available.

    Instead you ramble on accusing people like me of insinuating it's all a scam.

    You and the others that are mostly very like you have hardly ever answered any questions straight.

    The reason why this thread has failed along with the drug is totally down to you and the others that have been promoting it and not us who merely questioned it wanting answers.

    I have asked the Mnda to amend the nasty posts and freeze the thread.

    I think that RCH4 would be better under a new thread that is transparent. We need to know more about the people that are posting so that we feel that they are real people and not, what look like made up ones. They need credibility. The charity needs a representative on here, not to ask for money but to simply put there case and answer questions directly. It would be nice too if a developer would post also.

    This thread has been vary ambiguous, and lacking integrity.

    LOVE Terry
    Last edited by Terry; 8th September 2019 at 19:36.

  6. #356
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    Terry wrote

    Hi Doblett;

    You say "They"
    Who are they?
    What Pharisaical company is producing it?
    Who are the doctors and other specialists behind the drug?
    Which country makes the drug?


    I do not know and do not care. None of my business. I get the drug for free, its safe and is extending my life. For that I am grateful. That is all I care about now. There was a time I hoped it would be permanently available to everyone, but the MND community themselves put paid to that after all the untrue scam allegations and innuendos. Compassionate people being accused of being criminals is outrageous.

    What country runs the charity?
    Sportingmac has asked twice recently, Still can't find a link to the Charity registration in the US - can you help me out with that Doblett?
    You don't answer his question or what is implied by it. How much easier it would be to say, It's not a US charity but one form Australia and here's a direct link.


    Oh for goodness sake! I repeat my copy from their web site again. Am I a fool and lost the plot somehow? The following is crystal clear to me. There is no link. There is no registered charity.
    "The sponsors of this web site are a voluntary group of retired professionals from different countries. Based in Europe, they have no connection with any other entity, charity or corporate, and have no external financial support. Being privately funded and the public have never been asked for money, there is no requirement to register ​​the charity and incur the associated administrative costs.
    Their humanitarian objective is to bring a potentially new horizon to those affected by ALS - irrespective of their financial status."


    By the way Chas, the drug is no longer available.
    If Chas studied the charity site he would know that and everything else as well.

    Instead you ramble on accusing people like me of insinuating it's all a scam.
    Insinuation and unfounded hostility is exactly what is going on. Just read again the tone of wording in your postings.

    You and the others that are mostly very like you have hardly ever answered any questions straight.
    As you are not willing to study the charity site please do not expect "those like me" to bother any more by repeating answers that are all there.

    The reason why this thread has failed along with the drug is totally down to you and the others that have been promoting it and not us who merely questioned it wanting answers.
    I am disappointed that everything must be some other persons fault. Sign of character weakness. Those of us who take RCH4 are NOT promoting anything, we just want to exchange information about side effects and efficacy. For the last time, read the charity site for yourself and stop wasting my time please.

    I have asked the Mnda to amend the nasty posts and freeze the thread.
    Proves the fact that nobody wants to hear about something that actually works. The first thing in 22 years (the new `Edaravone` does NOT work) that slows the progression of MND. It is incredible that such a situation could exist.

    I think that RCH4 would be better under a new thread that is transparent. We need to know more about the people that are posting so that we feel that they are real people and not, what look like made up ones. They need credibility.

    I repeat part of a previous post
    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.

    I was 2 years on riluzole and no benefit. Now 5 years on RCH4 and no side effects.
    zzzzB0 819.png

    Shame on all you naysayers and trolls who are hurting other people. Including me. I`m done. I give up for the same reason that others have given up here. They get attacked and never come back. The whole MND community are the losers.


    Addition Wikipedia definition of troll
    In Internet slang, a troll is a person who starts quarrels or upsets people on the Internet to distract and sow discord by posting inflammatory and digressive, extraneous, or off-topic messages in an online community (such as a newsgroup, forum, chat room, or blog)

    Terry you have made 22 postings per week for the past 89 months

    you have now made 32 hostile posts in this thread, more than 9 posts a week on MNDA for 7 years and thankfully you are not even a PALS.
    Last edited by Admin_MND; 12th September 2019 at 18:04. Reason: removed at request of member

  7. #357
    Forum Member Terry's Avatar
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    Hi Dobett,

    At last, we have a straight answer to one question, Rch4 is no longer available. If only you and the others answered straight forward simple questions with answers this thread and maybe the future of this drug would be different.

    You say, Shame on all you naysayers and trolls.

    trolls

    (in folklore) an ugly creature depicted as either a giant or a dwarf

    I must admit that I am not so good to look at after eleven years with Mnd, so maybe some normal people might think that I am a troll, but it is grossly unfair to tar others with the same brush.

    Love Terry

  8. #358
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    Dobett

    You say you do not know and do not care, its none of your business who is producing this drug, and you say its safe. How do you know it's safe ? if there has been no clinical trials done on it for long term effects or even short term effects, everybody's body reacts differently to drugs.

    How do you know you're not just injecting yourself with a vile of saline ??? if you have no idea where its coming from, and how its being manufactured? Is it possible its just the placebo effect your experiencing and your progression with this illness would be exactly what it is with or without this drug ? If you don't even know who these doctors are that are sending you this drug who is it clinically that is monitoring the effects of it on your body, your own personal physician?

    You yourself, and others that pop up on this thread do not have some basic answers to these questions i.e What pharmaceutical company is producing it? Who are the doctors and other specialists behind the drug? Which country makes the drug? Its very understandable why many would want to have answers to these questions before injecting themselves with this drug and should not be called 'trolls' and 'naysayers' just because they are seeking these answers.

    It's also understandable you, and others taking rch4 have nothing to lose by taking it, but its very unfair to criticize others, and attack them because they are simply questioning the drug, and don't share your view about it.

    The controversy over this drug points directly to the Charity in my opinion. They could have clarified the answers to all these questions simply by answering them. If they are being labeled a 'scam' they have no one to blame but themselves, not the members of this forum.

    CCxx
    .

  9. #359
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    Doblett, you come across as a right nasty piece of work. I hope the association block your toxic posts.

  10. #360
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    We apologise for our delayed response to you all. We have wanted to take the time to properly review the ongoing issues and make sure we are allowing people the right to freedom of expression.

    We have received many requests to address this current situation both privately and publicly. We wanted to take this opportunity to share our thoughts.

    The thread has become very intense which of course means emotions are high. We can sympathise at how frustrating it is for those who are not engaged with the RCH4 charity to read about the experiences of those who are. However, we do feel they are not being insensitive by talking about their experiences. As much as a member may feel excluded because of the lack information or the availability of RCH4, to exclude members who wish to discuss it would be contradictory.

    We have more than once shared information and advice on unproven treatments and have been monitoring the information shared closely to ensure it meets our positioning. We would only look to remove or delete such posts or users if we believed them to be spam or to be contacting users for monetary gain. If anyone has experienced this with any member in any capcity, we would take this matter very seriously.

    Please note that content on the forum regarding RCH4 does not constitute endorsement or support from the MND Association. We provide the forum as an open and safe discussion environment for all users living with MND.

    We would like to reiterate that no thread is exclusive to a particular group, nor are members excluded from contributing to any topics.

    Every forum member has the responsibility to decide if they want to read or/and engage with a thread or posts. If you are made to feel uncomfortable by a topic then you are able to add members to an ignore list. To do so, you need to access said members profile where you will find ‘add to ignore list’ option on the right under the profile image. Unfortunately, this action is not yet available for threads.

    As forum admin, we like to allow you the freedom of expression, and for this reason we limit our involvement with threads, and we think this is the way most forum members prefer it. We would however like to remind you that the forum is an Association tool and we will not accept aggressive, antagonistic or anxiety-inducing behaviour toward other members of the forum or the Association itself. We are currently in private dialogue with forum members to remind them of the rules of the forum.

    In regards to RCH4, we agree that’s there are many unanswered questions raised here and as we have previously expressed, we are very open to finding out more. We are considering our options for how we can further investigate this however are not able to confirm actions at this stage but will update on the forum if we are in a position to do so.

    In the meantime, we would recommend that members take a step back from the topic of RCH4, as we feel at this stage, everything that can be said, has been.

    Thanks to all,

    Forum Admin

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