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  • Admin_MND
    replied
    We provide the forum to encourage supportive, informative and useful conversations for people living with and affected by MND. Occasionally subjects may lead to robust debate and opposing opinions. Our view is that this thread has become so polarised that it is no longer serving anyone’s interest and is only causing increased distress and anxiety amongst all contributors. As such, we will be closing this thread to any further entries as we feel this is the best way to try and break the current deadlock. The thread content will remain available to view.

    We would discourage any new threads being started in its place as it is likely that this would end in the same position. We will review any threads that focus on the same subject and may close them down to avoid the current issues being repeated.

    If you have any comments or questions please contact [email protected]

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  • Guest's Avatar
    Guest replied
    Stop calling people names OriginalThought, and go to sleep you sound like you need the rest. You sound like your going to give yourself a heart attack with all that ranting and raving, and rage.

    I know the truth of what was asked for financial funding, and you need to believe what you believe, so lets just leave it at that.

    Good night and goodbye.
    Last edited by ccinjersey; 24 November 2019, 04:32.

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  • originalthought
    replied
    ccinjersey, kindly stop this. You are in violation of the forum rules by calling me a liar. I do not appreciate that from anyone, much less from a time wasting troll.
    You said "another false statement and lie. The random forum members that pop up only on this thread did specifically ask for financial investors (myself being one of them) in order for the Charity to continue producing their drug and be able to distribute it for free."

    Get your facts straight. The charity has never asked you or anyone for investors. For goodness sake stop making an idiot of yourself. You still will not read information available. Same as from day one.
    From the above posting copied from the charity site
    We have no investors and we have never sought any. We are not the owners of the IP and have no beneficial interest, thus there is no material gain for us either now or in the future.

    One last time study the reply to the untrue review by Untangled. It will take you an hour.
    www.als-new-drug.com/alsuntangled-review
    So ccinjersey you are completely wrong. Now kindly apologise for calling me a liar and then go away please.

    I have heard that some of my fellow users are aiming to set up their own company or form a syndicate to bring the drug to approval (a few million I think) for their own medical benefit, own financial benefit and making it eligible under medical insurance or national health services for free where such services exist.
    Question - Why after all these years has this drug not made it to the market and be available to everyone?
    Answer - Trolls like you have undermined its credibility by branding it a scam, and the charity as criminals.

    YOU ARE THREATENING THE LIFE EXPECTANCY OF OTHER PEOPLE BY YOUR (AND OTHERS) UNENDING SMEAR CAMPAIGN AGAINST THIS NEW DRUG AND THE PEOPLE WHO PAY FOR IT AND WHO GAVE IT AWAY FOR FREE. YOU ARE THREATENING ITS FUTURE AND OUR LIVES. IT HAS ALSO RESULTED IN NOT BEING AVAILABLE TO EVERYONE WHO ASKS FOR IT AS WAS IN THE PAST.

    I close with a copy of the bottom of every page in the charity site.
    The humanitarian objective is to bring a potentially new horizon to those affected by ALS - irrespective of their financial status.
    Last edited by originalthought; 24 November 2019, 02:54. Reason: Added humanitarian quote from charity site

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  • Guest's Avatar
    Guest replied
    OriginalThought

    You continue to attack.

    You still didn't answer the question of what you are injecting yourself with? any kid in middle school can create a chart and graph and post it on a website, just as any kid in middle school can create a website...just saying

    Another false statement and lie. The random forum members that pop up only on this thread did specifically ask for financial investors (myself being one of them) in order for the Charity to continue producing their drug and be able to distribute it for free.

    I am truly sorry that you believe it is me threatening your life expectancy, and as I have said before I wish you and all those taking RCH4 much success with it.

    CC
    Last edited by ccinjersey; 24 November 2019, 01:43.

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  • originalthought
    replied
    Thank you terry, you said “How do you know that she looked in for 36 seconds one day and a few another???????????????

    I already said so. As usual, you fail to read the available information. I asked the charity for a copy of their site traffic log. All web site logs contain all the information, what pages, time on each page, IP, everything. When we visit a web site we agree to the data being recorded, if not, we leave. Actually for some sites the information is in the public domain if you look for it.
    ____________________________
    ccinjersey thank you again for your customary courtesy. You said “the truth is you haven't a clue what other forum members here have done or researched regarding this drug” and “How do you know it is not simply a vial of saline ??

    Ridiculous. Look at the results.
    als-2-year-117 chart.jpg Edaravone-Radicava-Efficacy.png
    I have no idea how many PALS are taking this drug. I don`t think many, maybe one hundred. Whatever the number, every one of us did our own research from the same sources available to you.

    ccinjersey, you earlier asked “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 ??

    Of course. From the charity response to Untangled

    Our papers were refused by the scientific journals, the gift of the drug was refused by the ALS charities. Therefore, we gave up and tried to help suffering PALS instead of helping academics.

    attacks on respected clinicians, scientists and institutions in the ALS community,

    Respected? Their own words referring to themselves. Self-opinionated professional ego which will not escape the attention of the reader.

    The public should be aware. Behind the ALS Establishment facade, there exists a quiet web of collusion.

    The stark realities which require a response:
    With all the "respect" that they have commanded, what has the ALS research community who published this actually achieved?
    Where are their results from all their charity and grant money? Where has all the money gone?
    Why have they not developed a drug which can truly slow the progression?
    Why have they consistently tried to stop PALS from free of charge access to a drug that truly extends life?


    and cynicism about academia itself.

    Cynicism? Well founded.

    For example, Dr. Bedlack`s own University, Duke, has been forced to deal with a series of financial embarrassments. Their latest problem is being required to pay back to the taxpayer $112 million relating to research grants. The “research” proved to be scammed, falsified and/or fabricated data relating to 30 occasions of fraud. Source: PHYS.org/news/2019-03

    In 2017, Duke University threatened to sue this charity for telling the truth about Bedlack`s role in the collapse of this charity by failing to stop the untrue SCAM allegations and the avalanche of vitriolic abuse which followed on the Internet social media. The talents of Duke University lawyers would be better used in defending fraudulent employees nearer to home instead of trying to sue innocent humanitarian charities overseas.

    In the case of the ALS Establishment, cynicism is particularly well deserved.
    The Ice Bucket Challenge windfall of over $100 million appears to be distributed among the members of the Establishment “club”.
    In addition, $100 million per year research income and they have never significantly slowed the ALSFRS-R progression in anyone. But RCH4 does for many. A self-evident truth that the authors of this paper would find unwelcome if brought to the attention of their charitable donors.

    “Institutions will try to preserve the problem to which they are supposed to be the solution.
    Solve the problem, no job."
    Clay Shirky - Social commentator and consultant.



    You also said “my dear friend could have single handedly financially funded this drug herself without the 'Charity' needing one other investor.

    Again from the site “We have no investors and we have never sought any. We are not the owners of the IP and have no beneficial interest, thus there is no material gain for us either now or in the future.”

    You continually attack the same forum members here who question and disagree with you and that's another fact.

    The fact is that you are threatening my life expectancy by your activities. This is very serious. This forum is not about football or something trivial, but about life itself. It is a disgrace to criticise charitable people who give their own money to help PALS.
    I am a doctor, use the drug and have much experience. Thus I have something to contribute to the discussion, whereas you have nothing other than ego and angst. Any reasonable reader can see this. Please think about it ccinjersey. Your dear friend would not wish you to inadvertently risk killing others prematurely. Of that I am certain.
    Last edited by originalthought; 24 November 2019, 00:10. Reason: Edit added chart image

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  • Terry
    replied
    Hi Original;

    How do you know that she looked in for 36 seconds one day and a few another???????????????

    It seems to me that you are using your web site for the wrong reasons and probably breaking privacy rules of your and others peoples web sites.

    Maybe she has a photographic memory and 36 seconds is more than enough to gather all the info.

    As for a apology to Lxxxe, I think that is required because she's said what she believes to be right and I'm sure that Lxxxe would contact us if she felt otherwise.

    How can you have time and be bothered to count up all the posts on your thread?

    Yes, one of us have died whilst taking Rch4 and another has had reactions to it.

    Please give the WHOLE truth when posting and not just positive things.

    Love Terry

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  • Guest's Avatar
    Guest replied
    OriginalThought

    You are very misguided in your presumption of forum members agenda here, and their intent on this thread because there is no agenda.

    But here are some facts for you since you state you like to seek out information, as I do.as well.

    You have stated numerous times that I'm not a PALS as if that is a justified reason why I should not be asking questions and researching information pertaining to this drug. I had researched this drug exhaustingly when first learning about it, but came up short down every avenue I pursued.

    The reason I was seeking this information was for my dear friend who was living with this illness, hoping it was a drug that could actually help her. Had this drug held any credibility in the ALS/MND medical community, or the 'Charity' had been forthcoming and trustworthy and stopped hiding in the shadows, my dear friend could have single handedly financially funded this drug herself without the 'Charity' needing one other investor.

    Another fact. I wanted to have hope and faith in this drug as you do, and asked of friend of mine in England who's niece is a doctor if she could write the letter or script whatever was required so this forum member here who wanted to try the drug, and could obtain the drug.

    You spit out these false facts and statements OriginalThouht as if its the truth, when the truth is you haven't a clue what other forum members here have done or researched regarding this drug.

    You continually attack the same forum members here who question and disagree with you and that's another fact.

    Below I copied and pasted one of the statements and rebuttal answers from the Charity from the ALS untangled report ,which btw I had read. So I have another question for you based on the Charity's response to the ALS Untangle statement. How do you know what you are injecting yourself with?? How do you know it is not simply a vial of saline ??

    ******

    ALS Untangled: Neither the molecular structure nor the chemical class of RCH4 is described.​​

    Charity's response: As far as we can ascertain, there are no molecular chemists listed among the authors. If it were described, they would not understand it anyway.


    Since you once again included my name in your most recent attack of forum members here, I am once again reporting you with the hope you will be banned.

    Sincerely
    CC

    ​​
    Last edited by ccinjersey; 23 November 2019, 21:37.

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  • originalthought
    replied
    No Terry, I am not attacking anyone, only pointing out their true facts and numbers. That is observation, not attack.
    An afterthought Terry, you said "we don't get funding from drug companies or any where else.". Well neither does the charity who gives RCH4 to us for free. To attack a charity who pay from their own pockets to try to help PALS is just awful.
    Anyway, best to you.
    Last edited by originalthought; 23 November 2019, 17:27. Reason: Addition re funding

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  • Terry
    replied
    Hi Original;

    Another attacking post.

    You refer to us 3 having some agenda, YES IT'S TRUE. We try our hardest to help people, especially those with Mnd.

    We are 3 very different independent people and sadly we don't get funding from drug companies or any where else.

    We were very interested in RCH4 when the thread started and tried to ask questions about it with the Idea of some of us taking it. The simple questions were never answered. That along with people promoting it not having any forum history and all stating the same thing made us start to smell a rat.

    It's all the people promoting it fault by not answering our simple question fault that this thread has turned out how it has, A disgrace.

    Please not that I have not named any people or attacked anyone personally.

    Maybe I am educated Just a little.

    Love Terry

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  • originalthought
    replied
    This posting only states true facts and is intended to draw attention that most forums become dominated by a few people who invariably have some agenda, either to promote themselves, or denigrate someone else, or some thing. All my life I have had to try and diagnose patients, so I am used to investigating information which may be available. Let us look at the following three contributors who are consistently hostile (in this case) to the only MND drug that has ever been seen to extend life expectancy for PALS. It will be noted that after people get attacked by dominators, they never come back again. Terry once said "The forum is still the best source for friendship and information". Here we can see the stifling of information.

    Instead of RCH4 being good news about a new development, these people are trying to kill it. And those of us who rely on it. From the the Key Opinion Leaders with vested interests who dominate research, as trolls dominate forums, the MND situation is completely dysfunctional. Very sad. Thank you for reading this.
    Last edited by Admin_MND; 25 November 2019, 11:52. Reason: This post has been edited as breaches forum rules 8.4.1 and 8.4.3

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  • Guest's Avatar
    Guest replied
    OriginalThought

    I had reported your posts to forum Administration. If you continue to include my name in your nasty, condescending posts I will continue to report you.

    You 'claim' to be a doctor maybe you should start using some bedside manners, clearly you have not been educated in them.

    CC

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  • Terry
    replied
    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

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  • originalthought
    replied
    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, 14:11. Reason: Names and content removed at the request of forum members.

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  • Terry
    replied
    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

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  • Guest's Avatar
    Guest replied
    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, 01:39.

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