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Thread: Rch4

  1. #351
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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 16:04. Reason: removed at request of member

  2. #352
    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

  3. #353
    ccinjersey
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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

  4. #354
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    Doblett, you come across as a right nasty piece of work. I hope the association block your toxic posts.

  5. #355
    Forum Administrator Admin_MND's Avatar
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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

  6. #356
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    "...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...]

    Sort of contradicts your points you made above!

    I consider myself to be a reasonably good researcher - using web tools I have traced the various websites to location - the US and Australia are readily discoverable. Also PatientsLikeMe is funded by selling your information - as pointed out on their own website - so if you are data sensitive you might want to think about.

    I have trawled various medical/scientific websites - PUBMED and Cochrane Library - seeking more information on RCH4 - primarily to be better informed about the potential of RCH4. I am so far disappointed in my research. Can anyone help me out here and point me to published data/papers?

    Kind Regards

    Chas

  7. #357
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    To Admin / Moderators

    Whereas the writer said that he will no longer respond to other members who contribute nothing here, it is imperative that the following observations are made to you, the moderators.

    The primary duties of a moderator are
    a/ Be impartial
    b/ Control trolls and aggressive / abusive behaviour

    Admin wrote (above posting, previous page)


    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.
    This is not correct. Contributors want a disciplined forum. If a forum is not controlled, conduct descends into a bear pit and a haven for trolls.

    We would however like to remind you that the forum is an Association tool and we will not accept aggressive, antagonistic
    Kindly read Jer 788 above who said "Doblett, you come across as a right nasty piece of work. I hope the association block your toxic posts."
    Obviously, this behaviour is accepted.
    Jer 788, thank you for your courtesy.


    or anxiety-inducing behaviour toward other members of the forum or the Association itself.
    The unwarranted activities of hostile innuendo and untrue allegations of SCAM by some members (here and elsewhere) have caused the collapse of a humanitarian charity who supply, free of charge an experimental drug which clearly works for some of not many. We only want to exchange information on our experience of side effects and efficacy. We are NOT trying to goad others, as has been suggested.
    I am one of the lucky ones. I repeat my own chart below.

    zzzzB0 819.png

    Moderators, if YOU are relying on the continued availability of a drug which is extending your life, and you see people who have nothing whatever to do with it, trying to end the drug (they have already succeeded), you too would be overcome with anxiety. It is self-evident that “anxiety-inducing” behaviour is indeed accepted here.

    In regards to RCH4, we agree that’s there are many unanswered questions raised here
    There are no unanswered questions for those who bother to spend the time to study the suppliers web site.

    `Chas` above said "I have trawled through various medical/scientific websites........ to be better informed about RCH4. Can anyone help me out here......"
    Yes Chas. Just study the suppliers web site www.RCH4.com


    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
    Moderators, I suggest that you ask your own organisation, The Motor Neurone Disease Association, why they repeatedly refused, year after year, the supplier’s scientific papers for oral delivery at their annual symposium.
    One year they offered them a students poster which some academics have described as “an insult”.
    Study the suppliers web site.

    I trust that this posting, which is true and accurate in every respect, causes an outbreak of people actually studying the Internet before they make repetitive, space and time wasting postings, start to offer courtesy, compassion, fairness, cool reflection and rigorous oversight of this forum thread.

    There is huge interest in RCH4 from the MND community. Perhaps this is the most significant thread in recent times as it deals with something genuinely new that appears to work, and not with endless discussion about protocols, trials, diets and supplements, none of which have been seen to extend life.

    I will now refer to a message I received from the Moderators:

    In light of recent comments on the forum we would like to remind you to consider the impact of your posts on others.
    Others? What about the impact on those who see the end of their treatment due to the activities of those here who have contributed to its demise by unwarranted hostility, untruth and innuendo?

    Some of the language being used can be considered antagonistic and unnecessarily argumentative.
    My posts antagonistic? NO. Frustrated, YES - with good reason. Argumentative? Certainly not. Check my posts and you will find only statements of verifiable fact.

    At this stage, we want to continue positive debate and will not be restricting your access to the forum. If however we feel that you continue to contribute in a manner that is not in the best interests of all users, we will suspend or remove your account.
    Interesting. Unlike others, I am one of the members here who have definite information to contribute. However in the light that I have previously stated that I will not waste my time responding to those here who contribute nothing only hostility, well...............

    Thank you Admin / Moderators.

  8. #358
    ccinjersey
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    Doblett

    You continually like to aggressively and indirectly call long standing forum members here 'Trolls'. I joined the forum seven years ago and the only member I would call a Troll here is YOU.

    You only pop up on this forum and only this thread to peddle a drug that has no clinical proof to be safe and effective or even authentic. You are hostile, aggressive and critical to those that question your opinion and views regarding this drug and the mysterious so called 'Charity'

    Get it together Doblett, this drug is not available, so you peddling this drug here serves no purpose as does this thread in my honest and sincere opinion....and just to add Doblett you would be correct I did once again report you, and your above recent post to forum administration for the obvious reasons.


    CCxx
    Last edited by ccinjersey; 16th September 2019 at 14:09.

  9. #359
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    Doblett: are you practicing that age old tactic - the best form of defence is to attack? If you put as much effort into enlightening us as you do by calling us out - then perhaps we might see clarity in the status of this new drug.

    So my friend - please keep the rhetoric out of it and show us all clear and unequivocal evidence of the nature of this drug.

    Kind regards

    Chas

  10. #360
    Forum Member Ellie's Avatar
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    Quote Originally Posted by Doblett View Post

    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.

    This is not correct.
    Actually Doblett, that IS correct.

    As you are a new member who mainly posts on this thread which you started, I would not expect you to have realised that is how the Forum operates on a day-to-day basis.

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