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Thread: Rch4

  1. #91
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    Marlon:
    Thank you for your detailed reply.
    I very much appreciate the time and effort you have taken.
    Strength and good luck to you and your wife.
    I hope you post again in a year and let us know how it goes.

    Strength to you both.

    Charles

  2. #92
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    Hello

    I presume that you are liiving in Oz. It is interesting that your wife's Consultant can see the benefits of
    Rch4 but is not prepared to support your comments.

    Whilst I wish your wife continued access to this drug and its help, unless the providers come forward and make it more easily accessible to more suffers I do not see how your postings are of any help except to cause frustration.
    Annb

  3. #93
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    Hi,

    Our consultant can see the benefit but because the drug is not FDA approved yet, from a professional position he cannot be a supporter. He is watching closley and is very happy with my wifes lack of progress which prompted him to get gene tests to prove she has the disease because she is doing so well.

    Also I heard, ALSWorldwide are selling counterfeit Edaravone from India and the CEO and his wife drew US$1 million salary & expenses last year from the so-called "Non-Profit". I would advise, do your homework on this company before sending them any money!

  4. #94
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    To those interested;

    ALS Worldwide sent me the email below of his apology. Someone else inquired about RCH4 and he realized he had made the mistake and thought I was inquiring about edaravone and not RCH4.

    To; mndmarlon,

    Say what you like about ALS Worldwide but I value their opinion, and respect all the good work they do just as I do MNDA. Can only hope the RC Group will provide more transparency and clinical data to support their claims about RCH4. All the best to your wife.

    CC

    ********

    Dear xxxx,

    Thanks so much for your email. My most sincere apology for the error. In the haze of end-of-workday (2130 hours) the other night, I clearly read Cxxxxxx inquiry about Rch4 and answered as though she had inquired about edaravone. Totally different treatments, unrelated to one another, and I answered Cxxxxxx as though she had asked about edaravone.

    My comments were solely about edaravone, which we have found to be a very efficacious treatment, and about which you can read on our website, FaceBook page and in numerous journals.

    As for Rch4, the sodium chloride product frequently discussed by Richard C of RC Charity Group in UK, we have not seen any relevant benefit amongst those who have used the protocol. That is merely an observation, not a study, and is based on the statements of patients, some of whom may have tried the protocol in an imperfect way.

    Again, my apology for the unintended misstatement in my earlier reply to Cxxxxxx. Please feel free to ask anything else you may wish to discuss. I promise to reply earlier in the evening.

    With kind regards,

    Steve

    Stephen Byer
    stephenbyer@alsworldwide.org
    ALS Worldwide
    5808 Dawley Drive
    Fitchburg, WI 53711-7209
    608-663-0920 Office
    608-698-4200 Cell
    608-237-2274 Fax
    Stephen.Byer2 Skype

    To learn more, please visit us online at www.alsworldwide.org and on Facebook and Twitter.

    ALS Worldwide is a nonprofit organization that strives to help people with ALS live better and longer

    by providing free guidance, care and support to patients and their loved ones in more than 150 countries.
    .

  5. #95
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    I've also been doing a lot of digging about rch4 and every forum seems to have the same type of discussion going on.

    There also seems to be at least two websites stating they offer the free drug on a limited applicant basis and that they are a charity.

    http://www.als-new-drug.com
    And
    http://rch4.com

    If it was one company/charity offering this new drug then why are there multiple sites?

    I really want this to be true but I'm finding it hard to accept - is there any new info about RCH4?

    Best wishes

  6. #96
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    All:
    This is clearly an experimental treatment.
    Its futile looking for validation or compelling research evidence. It is not there.
    You are your own experiment.
    If it were available in the UK with a medical-off I would try it.
    I would be my own research study.
    If I had no side-effects I would trial it for a year.
    If it slowed me down I would keep going.
    I would take snake oil if it slowed me down.
    I would go to Lourdes and drink holy water if it slowed me down.

    Point is its hypothetical because no one will authorize it here.
    Its experimental.

    Charles

  7. #97
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    alsuntangled

    Can anyone explain to me how is it that RCH4 has become 2nd on ALSuntangled in just ONE DAY? RCH4 was 1st by over 300 votes and has been so for months (i check it regularly), all the other protocols got extra votes mysteriously in ONE DAY (570 votes for Anti-Retroviral therapy AND 400 votes for Ficompa), just in time for the review to start. i have attached screen shots of this.

    alsuntangled.com/open.php[/url]

    This is not the first time this has happened and this is why i monitor the site very closely, last time RCH4 was top of the list, votes were removed mysteriously and another protocol was evaluated. this is a huge disappointment for me and everyone that wants to see RCH4 evaluated/reviewed.

    Nick
    Attached Images Attached Images

  8. #98
    Forum Member Ellie's Avatar
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    Hi Nick,

    Although it shouldn’t be possible, an individual IP address can vote several times in one session, close the tab then start a new session and vote again. It’s silly, basic stuff.

    Thus, the voting system is open to abuse.

    Ellie.
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

  9. #99
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    Hi Ellie, i understand that but we are talking about hundreds of votes in one day, if it was 10, 20, 30 votes it wouldn't have raised alarms. i think someone internally doesn't want RCH4 evaluated for whatever reason, i cant explain it any other way. so disappointing

    Nick

  10. #100
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    This is my first post on this forum, my mother has been taking RCH4 for the past 18 months. She has been stable with no side effects at all, we have never been asked to pay for the drug its always been free. This is no scam and I can say that I have not heard one person say they were ever scammed by this group!! I'm pretty sure somebody needs to get scammed first in order to call it a scam!! All I know is that RCH4 is working well with mom, it has stopped her decline and that's all that matters to me!!!!!!!!!!!!

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