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Thread: Rch4

  1. #341
    Forum Member Ellie's Avatar
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    Ooh, how wonderful Meffordh.

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

  2. #342
    Forum Member Terry's Avatar
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    Quote 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; 7th September 2019 at 12:09.

  3. #343
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    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.

  4. #344
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    Still can't find a link to the Charity registration in the US - can you help me out with that Doblett?

    Chas

  5. #345
    Forum Member Terry's Avatar
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    Quote 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

  6. #346
    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.

  7. #347
    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

  8. #348
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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 13:52. Reason: Addition. Reply to Ellie

  9. #349
    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.

  10. #350
    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 17:36.

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