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Thread: Rch4

  1. #131
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    ccinjersey
    Thank you for your good wishes (your previous post to me above).

    May I ask you 2 questions please.
    You said
    if there is a ‘real’ treatment out there to combat this illness that I was to become aware of I would indeed seek out all the information about it, and knock on every door, and pound on it if necessary

    May I ask have you ever contacted the rch4 charity at any time before or after launching your quest for information?

    You also said
    ALS Worldwide who have nothing to do with rch4 other than making a mistake about the inquiry to them about this drug

    Also may I ask if you have ever purchased anything from ALS Worldwide?
    If so, what was the quality of the support and monthly follow up care they provided for your money.

    The following untrue statements by ALS Worldwide were no mistake (from previous post)
    It appears that they did not withdraw the "mistakes" and did not reply to this letter from the charity.
    This is an extract

    2/ RCH4 is sodium chloride
    This is untrue and you know it from our correspondence in 2017.

    3/ Your untrue statement:
    "As for Rch4, the sodium chloride product frequently discussed by Richard C of RC Charity Group"
    You are well aware that I never said any such thing.
    I have never spoken, or written, either of the words "sodium" or "chloride", individually or collectively, to you or anyone else in connection with ALS or RCH4.

    4/ Stephen, you have absolutely no evidence to substantiate your following words:
    "We have not seen any relevant benefit [For RCH4] amongst those who have used the protocol"

    According to many PALS around the world posting on the ALS forums, there is indeed benefit - far better than anything else - including genuine Edaravone/Radicava.
    http://www.als-new-drug.com/efficacy

    xxxxxxxxxxxxxxxxxx

    Make up your own mind about the conduct of ALS Worldwide.

    I would comment in closing that nobody has said rch4 is a miracle drug. But a most if not every PALS worldwide say it slows or halts progression. From my own experience I would say that is an understatement everything considered.
    The rch4 charity themselves say it must be considered an unproven drug and is not a cure.

  2. #132
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    Rch4 is supplied to us free of charge and there are numerous users on the net reporting the same successful results. What is there to be suspicious about.
    The charity is actively looking for funding to take the drug through the next set of trials. Why would it tell anyone specific details on how the drug works. They obviously want to protect their own IP. All we know, is that it is a pepetide and it seems to work very well. That is the important bit.
    If details are released of the drug, this then leads to counterfeiting which would be terminal for a very promising drug. If the counterfeiter does not make it exactly right and markets it as Rch4, and it does not then work, it would kill the future of the drug. Does anyone know the exact ingredients of many drugs on the market- I doubt it very much, so why would Rch4 be any different?

    Anyway, just to update, my wife is still going good with no progression and her latest charts are below



  3. #133
    Forum Member nunhead_man's Avatar
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    If I can add my two pennies worth I've not had a good experience with them. Despite me sending apart copy of the letter from my neurologist explaining what my condition is they did not seem to believe I had motor neurone disease and not very helpful in emails as I was not calling the files I was sending them the right names et cetera et cetera
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm a 90% right arm, plus other bits including left shoulder

  4. #134
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    Andy, as you can appreciate the charity gets lots of inquiries and they must make sure you have MND, also labeling your documents is not a lot to ask.
    I havenít posted for a few months and I wanted to share my progress on RCH4, I have been taking it now since August 2017 and since then My ALSFSR score has only declined by 2 points, my data below.
    I am extremely grateful for all the help and support the charity has provided me so far and Iím happy to see more and more PALS supporting the charity as they deserve it.

    IMG_4463.jpg
    Nick

  5. #135
    Forum Member nunhead_man's Avatar
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    Quote Originally Posted by nrmnd View Post
    Andy, as you can appreciate the charity gets lots of inquiries and they must make sure you have MND, also labeling your documents is not a lot to ask.
    And is not a lot to expect courtesy in pointing out errors.

    And perhaps I put them off by asking if they had done any double-blind trials?

    As it is I say to people who ask me whether Riluzole is having any effect on me I have to say I cannot tell as I'm not proposing to stop to find out if I get ill faster - all I know is the clinical trials have shown an average three-month improvement in longevity in the trial group and given the variation in motor neurone disease across genetic causes and environmental factors that must be the equivalent of my definition of an average.

    That definition is that a person with their head in a fridge and in an oven is on average comfortable temperature wise.

    My own self checked ALSF score seems to have declined by six since I first saw signs in May 2015

    Having said all that I wish you well and hope that RCH4 is having some effect on you.
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm a 90% right arm, plus other bits including left shoulder

  6. #136
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    Personally I will believe when the highly subjective scoring that is AFRS is replaced by a medically objective test - and such a testing regime has recently been researched and published.

  7. #137
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    However, I do have to ask - as does Doddie Weir btw - it has been 22 years since Riluzole was released as a delaying agent - what has happened over those 22 years? They can give a mouse MND and they can cure it - so I'm off to change my species to mouse

  8. #138
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    When asked "Are you a mouse or a man?"
    I would happily answer "A mouse".

    Charles

  9. #139
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    Hi Charles

    Good one. Me too.

    Regards

    Chas

  10. #140
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    Hello nrmnd,
    When you say that you have been taking this drug for a while, does that mean orally?
    Fru

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