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Thread: Rch4

  1. #321
    Forum Member Ellie's Avatar
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    Quote Originally Posted by Ellie View Post
    Dear Forum Admin,

    Given your post above, please also give your opinion on:

    - The fairness and morality of allowing people to post about a product which is UNAVAILABLE to the people who read the posts

    To me, as a long-term and active Forum Member living with a terminal illness, I can assure you that these type of posts are beyond cruel and both marginalise and exclude me, and the rest of the bona fide Forum Members, as we cannot avail of the product about which they taunt us - and yes, it is a taunt which shows contempt for the rest of us.

    I find these types of posts, on which I commented, to be offensive, cause annoyance, needless anxiety and also violate good morals and practice. Furthermore, this cohort of Members join with the sole purpose of posting only on the topic of RCH4, and are not joing this Forum to support other Members with the challenges of living with MND - all of which contravene Forum Rules.

    The vast majority of these Members, if not all, already post their updates on a dedicated sub-forum on the Patients Like Me website.

    I know you, as the MNDA, have empathy with those of us living with this life changing terminal illness, so I hope you understand how deeply offensive and upsetting it is to have these types of posts posted again and again, serving no purpose in the Research and Trials sub-forum, or in any other sub-forum for that matter.

    I look forward to reading your reply.

    Kind regards,
    Ellie.
    Dear Forum Admin,

    Please may I have a reply to my post of 30th August.

    Thank you.
    Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  2. #322
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    I am very upset to read Ellie`s posting from Dublin and the stress she has suffered as it is not available to her. This distress is certainly not intentional. Users of the drug RCH4 only wish to contact others using it and we only wish to exchange our experience of it.


    When the charity had the funds, everyone asking for help was accepted. Please Ellie, do not take this thread out of context. We are only trying to exchange information good or bad, we are certainly not trying to taunt anyone.

    Thank you
    Last edited by Admin_MND; 13th September 2019 at 13:55. Reason: Breach of rules

  3. #323
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    Ellie, please do not be so upset. Sorry, you have probably forgotten, you did know about the drug. Your post from September 12th. 2017.

    Have you filled out the form on their "Contact Us" page?

    Ellie x. (Hope you're doing well)

  4. #324
    Forum Member Terry's Avatar
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    Hi Original thought,

    Ellie has not working limbs or speech for ten years so you see why your posts are insentive and need modifying.

    You say that you want to share experiences with other users but you and most of the others that post similar things don't talk to each other and do very similar posts.

    Most of you don't even put a country let alone a area.

    You say 'We have never had a enquiry from Dublin', so I assume you are in the company that destributes it and not a Mnd sufferer.

    Others here have asked questions like how many people are and have been taking it and how many people it did not work for. Also it would be good to why the people stopped taking it.

    Excuse my sarcasm but if you privy to the Dublin info then why not the rest.

    Also, if you haven't, please make your position clear as to your involvement with the drug.

    This might reduce some of the cloak and dagger stuff.

    Love Terry

  5. #325
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    originalthought, I totally agree with you!
    At the time when the website of Charity Group had the contact info, many patients knew about it and they could apply if they had the diagnosis, the doctors' permission, any other documents that might have been required.

    But, I think, we, all, are missing the point: this is not a war between us, the patients. We should not accuse each other or separate into two adverse groups. We are on the same side and we must wonder why this drug with good results is being hampered to get to all patients.

    All the best,
    Ionel

  6. #326
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    For what its worth in my personal opinion, this thread serves no purpose.

    Why continue to give those pop up members that are here to solely promote a drug that is not available, and has no clinical support to prove its effectiveness a platform ?

    As Terry pointed out they are not exchanging information with one another, and as Ellie stated they are already posting on Patients Like Me.

    They serve no purpose here other then to upset long standing forum members whether it be intentional or not.

    MNDA stated the 'Charity' declined to show up at the 2018 Symposium, if these doctors, scientists and researcher are not willing to stand up for, and stand behind their wonder drug themselves what is the point of this thread to continue on ?

    CCxx
    .

  7. #327
    Forum Member Terry's Avatar
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    Hi lonel,

    We know you're not from Dublin, so that narrows it down a bit.

    Love Terry
    Last edited by Terry; 3rd September 2019 at 16:38.

  8. #328
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    Hello Terry and thank you for your post as follows

    Most of you don't even put a country let alone a area.

    Sorry, I have corrected this oversight. I am in the UK, diagnosed 2014 and a retired GP.

    You say 'We have never had a enquiry from Dublin', so I assume you are in the company that destributes it and not a Mnd sufferer.


    Re Dublin, I did not say that, the charity told me today. Please study my post. Also you assume incorrectly. There is no company, it is provided by a voluntary charity to who I owe a great debt of gratitude

    Others here have asked questions like how many people are and have been taking it and how many people it did not work for.
    Study their web site. It is all there and they also say that 14% are non-responders

    Also it would be good to why the people stopped taking it.
    There is one reported case of voluntarily stopping on the PLM forum. I have no other knowledge

    Excuse my sarcasm but if you privy to the Dublin info then why not the rest.
    I only asked them about Dublin because I am saddened by the upset endured by Ellie

    Also, if you haven't, please make your position clear as to your involvement with the drug.
    No involvement at all other than as a user who is provided it for free by the charity. This may stop due to the uproar generated by those who wish to see it ended and the untrue allegations of it being a scam. Little wonder that charity funding collapsed and no money now.

    Edit addition. My attention has recently been drawn to a Utube documentary about the hostility to new drugs
    Last edited by originalthought; 3rd September 2019 at 16:58. Reason: Added a Utube video link which is interesting

  9. #329
    Forum Member Terry's Avatar
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    Sorry that you have Mnd,

    Where abouts in the UK are you.

    I'm afraid by most of you being so ambiguous, having strange names, not really talking to each other and showing similar looking results, etc, makes any claims very dubious.

    I have not followed this thread because of those reasons.

    If the company, (group) contacted you, why don't they have a presents here in a passive form, they must be reading it.

    It has always been a ambiguous thread, such a shame for everyone concerned.

    Love Terry

  10. #330
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    Again thank you Terry. You said

    If the company, (group) contacted you, why don't they have a presents here in a passive form, they must be reading it.

    Please read my post. I said I contacted the charity, not the other way around. As nobody bothers to study the information on web sites or in postings before they hit their keyboard, I do not propose to say any more. It is clear that nobody wishes to hear about anything that is safe and is efficacious and resents PALS exchanging information which is the objective of a forum. Extraordinary in view of the fact that to date there has been no other effective treatment for MND.
    I previously offered a link (above) to a Utube documentary which appears to confirm that this attitude is universal.

    Thank you all.

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