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Thread: Rch4

  1. #361
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    "...In the meantime, we would recommend that members take a step back from the topic of RCH4, as we feel at this stage, everything that can be said, has been...]

    Sort of contradicts your points you made above!

    I consider myself to be a reasonably good researcher - using web tools I have traced the various websites to location - the US and Australia are readily discoverable. Also PatientsLikeMe is funded by selling your information - as pointed out on their own website - so if you are data sensitive you might want to think about.

    I have trawled various medical/scientific websites - PUBMED and Cochrane Library - seeking more information on RCH4 - primarily to be better informed about the potential of RCH4. I am so far disappointed in my research. Can anyone help me out here and point me to published data/papers?

    Kind Regards

    Chas

  2. #362
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    To Admin / Moderators

    Whereas the writer said that he will no longer respond to other members who contribute nothing here, it is imperative that the following observations are made to you, the moderators.

    The primary duties of a moderator are
    a/ Be impartial
    b/ Control trolls and aggressive / abusive behaviour

    Admin wrote (above posting, previous page)


    As forum admin, we like to allow you the freedom of expression, and for this reason we limit our involvement with threads, and we think this is the way most forum members prefer it.
    This is not correct. Contributors want a disciplined forum. If a forum is not controlled, conduct descends into a bear pit and a haven for trolls.

    We would however like to remind you that the forum is an Association tool and we will not accept aggressive, antagonistic
    Kindly read Jer 788 above who said "Doblett, you come across as a right nasty piece of work. I hope the association block your toxic posts."
    Obviously, this behaviour is accepted.
    Jer 788, thank you for your courtesy.


    or anxiety-inducing behaviour toward other members of the forum or the Association itself.
    The unwarranted activities of hostile innuendo and untrue allegations of SCAM by some members (here and elsewhere) have caused the collapse of a humanitarian charity who supply, free of charge an experimental drug which clearly works for some of not many. We only want to exchange information on our experience of side effects and efficacy. We are NOT trying to goad others, as has been suggested.
    I am one of the lucky ones. I repeat my own chart below.

    zzzzB0 819.png

    Moderators, if YOU are relying on the continued availability of a drug which is extending your life, and you see people who have nothing whatever to do with it, trying to end the drug (they have already succeeded), you too would be overcome with anxiety. It is self-evident that “anxiety-inducing” behaviour is indeed accepted here.

    In regards to RCH4, we agree that’s there are many unanswered questions raised here
    There are no unanswered questions for those who bother to spend the time to study the suppliers web site.

    `Chas` above said "I have trawled through various medical/scientific websites........ to be better informed about RCH4. Can anyone help me out here......"
    Yes Chas. Just study the suppliers web site www.RCH4.com


    and as we have previously expressed, we are very open to finding out more. We are considering our options for how we can further investigate this
    Moderators, I suggest that you ask your own organisation, The Motor Neurone Disease Association, why they repeatedly refused, year after year, the supplier’s scientific papers for oral delivery at their annual symposium.
    One year they offered them a students poster which some academics have described as “an insult”.
    Study the suppliers web site.

    I trust that this posting, which is true and accurate in every respect, causes an outbreak of people actually studying the Internet before they make repetitive, space and time wasting postings, start to offer courtesy, compassion, fairness, cool reflection and rigorous oversight of this forum thread.

    There is huge interest in RCH4 from the MND community. Perhaps this is the most significant thread in recent times as it deals with something genuinely new that appears to work, and not with endless discussion about protocols, trials, diets and supplements, none of which have been seen to extend life.

    I will now refer to a message I received from the Moderators:

    In light of recent comments on the forum we would like to remind you to consider the impact of your posts on others.
    Others? What about the impact on those who see the end of their treatment due to the activities of those here who have contributed to its demise by unwarranted hostility, untruth and innuendo?

    Some of the language being used can be considered antagonistic and unnecessarily argumentative.
    My posts antagonistic? NO. Frustrated, YES - with good reason. Argumentative? Certainly not. Check my posts and you will find only statements of verifiable fact.

    At this stage, we want to continue positive debate and will not be restricting your access to the forum. If however we feel that you continue to contribute in a manner that is not in the best interests of all users, we will suspend or remove your account.
    Interesting. Unlike others, I am one of the members here who have definite information to contribute. However in the light that I have previously stated that I will not waste my time responding to those here who contribute nothing only hostility, well...............

    Thank you Admin / Moderators.

  3. #363
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    Doblett

    You continually like to aggressively and indirectly call long standing forum members here 'Trolls'. I joined the forum seven years ago and the only member I would call a Troll here is YOU.

    You only pop up on this forum and only this thread to peddle a drug that has no clinical proof to be safe and effective or even authentic. You are hostile, aggressive and critical to those that question your opinion and views regarding this drug and the mysterious so called 'Charity'

    Get it together Doblett, this drug is not available, so you peddling this drug here serves no purpose as does this thread in my honest and sincere opinion....and just to add Doblett you would be correct I did once again report you, and your above recent post to forum administration for the obvious reasons.


    CCxx
    Last edited by ccinjersey; 16th September 2019 at 15:09.
    .

  4. #364
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    Doblett: are you practicing that age old tactic - the best form of defence is to attack? If you put as much effort into enlightening us as you do by calling us out - then perhaps we might see clarity in the status of this new drug.

    So my friend - please keep the rhetoric out of it and show us all clear and unequivocal evidence of the nature of this drug.

    Kind regards

    Chas

  5. #365
    Forum Member Ellie's Avatar
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    Quote Originally Posted by Doblett View Post

    As forum admin, we like to allow you the freedom of expression, and for this reason we limit our involvement with threads, and we think this is the way most forum members prefer it.

    This is not correct.
    Actually Doblett, that IS correct.

    As you are a new member who mainly posts on this thread which you started, I would not expect you to have realised that is how the Forum operates on a day-to-day basis.

  6. #366
    Forum Member nunhead_man's Avatar
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    Good afternoon Doblett

    I see you are now back on the forum after being thrown off after you declared information about me that I shared here outside this forum against the rules thereof.

    If I find you been sharing any more information about me outside this forum, I will find some way of throwing the book at you.
    Warmly


    Andy

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

  7. #367
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    Hi, Our mum was diagnosed in Nov 2017 and begun using RCH4 in Jan 2018. She hasn't used any other ALS drugs. Her condition has stabilised since commencing RCH4 and there have been no side effects.
    We as a family are extremely grateful to the charity that supplies RCH4 free of charge along with ongoing support.
    Our hope is that the charity gains the recognition they deserve, to bring this treatment option to the market and help other PALs dealing with this devastating disease.

    Below are her latest ALS scores.ALSFRS-R 09-19.png

  8. #368
    Forum Member Terry's Avatar
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    Hi Noow17,

    Pleased to hear that your mum is still getting the drug OK because I was led to believe that Dobett couldn't get it.

    Love Terry

  9. #369
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    Hi all,

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

    In other news: I have always doubted the veracity of ALSFR-S scales since a final number is used to assess the progress of ALS. I was doodling along with my usual research on ALS/MND when I came across a more detailed variant that breaks the final number down to specific area - respiratory et etc.

    https://www.mdcalc.com/revised-amyot...rs-r#use-cases

    Wondering if any other on the forum think it more useful to see the breakdown and improve a prognosis - note the original research document is from 1999.

    I think it a much better scale than an extract from a spreadsheet..

    What does everyone think?

    Kind regards

    Chas

  10. #370
    Forum Member Terry's Avatar
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    Hi Chas,

    Sorry to hear about the arms being out of stock. There was one advertised but it was adapted for a small person. I doubt that it is still available but I could check if you have short arms.

    Love Terry

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