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  • originalthought
    replied
    My life is being extended by RCH4 and you must forgive me for saying that I view your incessantly negative comments as endangering my life expectancy and that of others, who naturally feel the same.

    As to your comment to Lynne, the charity reply to the Untangled review is obviously biased in the extreme and some of the review is proven to be untrue.
    Any reasonable reader can see this.

    But the fact remains that you haven't bothered to study it and you don`t care that your sniping is hurting other patients. Readers here can see that. Whereas everyone here has genuine sympathy for your situation (and faces the same themselves), but you are damaging your own image by continuing with your remarks. They are unhelpful for all PALS including yourself.
    _____________________________
    if you had spent the hour needed to study the detailed reply to every point in the Untangled review, you would stop asking these same questions ad nauseam because they are answered there.

    Thank you all
    Last edited by Admin_MND; 22 November 2019, 14:08. Reason: Names and content removed at the request of forum members.

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  • Guest's Avatar
    Guest replied
    OriginalThought

    This topic doesn't 'disturb' me as you presume, what I find most interesting is that these questions still remain unanswered??????

    Believe what you need to believe OriginalThought, all the very best to you as well

    CCxx

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  • Ellie
    replied
    Originally posted by Lynne K View Post
    Thanks for the link Original Thought. A good read and worrying about the apparent biased and dishonest power brokers in scientific circles, immoral. Lynne
    Hi Lynne,

    Please don't take the rebuttal you read as being unbiased.

    Love Ellie.

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  • originalthought
    replied
    Lynne, you are correct!

    Truly an eye opener and worrying. When I was in practice, although not a specialist, I participated in the role of Investigator for a number of trials. What became apparent to me was in the case of rare diseases, they became dominated by a few key opinion leaders (KOL`s) to which everyone defers.
    The KOL`s did not welcome anything new that they were not part of and inevitably tried to suppress it, as the new development may threaten their professional status.

    If someone publishes a paper saying ABC, then afterwards when some new evidence appears that proves instead that XYZ is actually correct, every effort will be made to suppress or deny XYZ. Human nature, vested interest. My patients were never aware of any of this background to research. Truth be told, I was not either as a young man in early career.
    __________________________
    It may be best if you did not disturb yourself further as you have already made up your mind that RCH4 is nonsense and nothing will change your mind. Whereas you are entitled to your opinion which I respect, I can assure you from personal experience that your conclusion is misguided.

    I know that you have not bothered to spend the hour required to study the charity peoples reply to the ALS Untangled review.
    http://www.als-new-drug.com/alsuntangled-review

    How do I know that?
    Example, you asked "Why is it the ‘Charity’ does not come forward, state who they are and what they have discovered, and present it to ALS/MND community......etc...........??"

    They did.
    The journals refused their papers, the MND conference selection committees refused their papers, and the major ALS research organisations were offered the whole development as a humanitarian gift but they were not interested.
    So, if you had studied the charities reply to the ALS Untangled review, you would not have asked those questions which are all answered, together with the evidence and proofs.
    Anyway, all the best to you and thanks for your interest.
    Last edited by Admin_MND; 22 November 2019, 14:07. Reason: Names and content removed at the request of forum members.

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  • Guest's Avatar
    Guest replied
    OriginalThought

    I remain perplexed on one very questionable issue since the start of this thread. Why is it the ‘Charity’ does not come forward, state who they are and what they have discovered, and present it to ALS/MND community. If they are doctors, scientists and researchers why do they remain hidden with their discovery?? Wouldn’t that eliminate much if not all of the skepticism, and confusion surrounding this drug ??

    You state that you are a GP yourself so maybe you have insight as to why they remain silent when they have discovered a drug for this illness that those taking claim is effective??

    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 ??

    It seems plausible to me as well, and as you have stated many others because ALS Untangled seems more straight forward, and forthcoming with their information or lack of it pertaining to this drug then the mysterious ‘Charity’

    CCxx
    Last edited by ccinjersey; 20 November 2019, 01:02.

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  • Lynne K
    replied
    Thanks for the link Original Thought. A good read and worrying about the apparent biased and dishonest power brokers in scientific circles, immoral. Lynne

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  • originalthought
    replied
    Speaking as a retired GP and a user of RCH4 I am qualified to comment on the ALS Untangled review.

    I think that it is unfortunate that Terry has been selective in copying (above) portions of the review some of which are totally untrue. But she (?) cannot be expected to know the unsavoury background conduct of the MND establishment elite. Therefore the review appears plausible to Terry. And that is the problem, it appears plausible to all PALS.

    It is clearly not an objective document but it is biased in the extreme, and in most part, demonstrably untrue.

    The RCH4 charity response is revealing in that it lifts the cloak off the vested interests, back stabbing and I am sad to say, the egocentric medical profession involved in research. This review is a disgrace and an embarrassment to my profession.
    These are the people who destroyed the charity by untruthfully labelling them a scam thus depriving PALS who want to try RCH4 the opportunity of doing so.

    The detailed comprehensive response from the charity who supplies it free of charge should be studied very carefully as it is a revelation as to what happens to the millions given by PALS and the public for MND research. One may check for oneself the accuracy of every item on the RCH4 people`s reply.

    Study this and then come to your own conclusion as to the motives or fairness of the authors of the so-called review.
    It really is worth studying.
    http://www.als-new-drug.com/alsuntangled-review

    This cartoon from the response caught my eye. It says it all about those involved in MND research.
    The caption says
    We don`t want to believe you because we get paid to continue what we are doing
    NIH.png
    Last edited by originalthought; 19 November 2019, 17:33.

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  • noow17
    replied
    Mum continues .to do well on RCH4. Her latest ALSFRS-R charts
    Nov 19.png
    Nov 2019.png

    Leave a comment:


  • Sportingmac
    replied
    Thanks Terry,

    Supports my research results too. Hopefully this document (thanks Ellie) will give pause for thought.

    Kind regards

    Chas

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  • Terry
    replied
    Thanks for the link Ellie;

    Their report is very short, probably due to them not obtaining much if any info from Rch4.

    The report does say:- The website does mention some side effects in patients on RCH4 that
    were later determined to be due to “counterfeit edaravone” (6). Exactly what these side effects
    were, or how this determination of causality was made are not specified. Of concern, one website
    mentions 2 cases of anaphylaxis on RCH4, one of whom died

    And the conclusion:- Conclusion
    RCH4 is an unlicensed, unapproved product
    reported to “probably slow the progression of your
    ALS” (6) on a website. The only peer reviewed
    publication we found on this product is a single
    abstract which was never presented at a meeting.
    We have been unable to determine RCH4’s structure or chemical class, and its purported mechanism is one that has never been shown to be useful
    in treating PALS before. We have been unable to
    independently verify RCH4’s reported efficacy or
    even safety. Thus, at this time, we cannot advise
    PALS to use this product. We hope the proponents of RCH4 will someday present more useful
    information about their product at a scientific
    meeting or in a peer reviewed publication.
    We believe that regulatory oversight is important for optimizing patient safety on experimental
    drugs, and that independent peer review and replication are fundamentals of good science. Caution
    should be exercised around any product being
    developed and in clinical use without these safeguards and fundamentals in place.

    It appears that they've found out pretty much what we know and explain a few other things. So they're in the dark as much as we are.

    I hope I scanned it correctly.

    Love Terry

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  • Ellie
    replied
    ALSUntangled has published their review of RCH4.

    https://www.tandfonline.com/doi/full...1.2019.1675282
    Last edited by Ellie; 20 November 2019, 16:04.

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  • Sportingmac
    replied
    Originally posted by Terry View Post
    Hi Chas;

    Any new on the arms.

    Love Terry
    Ongoing saga with NHS. NHS say NO. MNDA need reason for no before offering assistance. Have written to CCG asking for their help. Also have investigation by Neurologist in Rehab Team into reasons too.

    Meantime I now have a GridPad - Yeahhhhh Robo-Arms would be good to reach the screen. Eyegaze if no robo-arms.
    Last edited by Sportingmac; 21 October 2019, 20:19.

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  • Terry
    replied
    Hi Noow17,

    Pleased to hear that your mum is still getting the drug OK.

    I was led to believe that Dobett couldn't get it and that was the reason for his anger.

    Love Terry

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  • Terry
    replied
    Originally posted by Sportingmac View Post
    Hi all,

    Neater Robo-arms are out of stock - sadly for me it will be a 4~5 week wait.

    Chas
    Hi Chas;

    Any new on the arms.

    Love Terry

    Leave a comment:


  • noow17
    replied
    Oct 2019.png

    Mums latest ALSFRS-R chart. She's still doing really well.

    Leave a comment:

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