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Thread: Rch4

  1. #301
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    Hi Ellie,
    I have bad anxiety as you know. So I am not going to read this thread anymore, I agree it should be removed. We have enough to worry about as it is.
    Take care Sheila.

  2. #302
    Forum Member Terry's Avatar
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    Quote Originally Posted by Doblett View Post

    This thread was started to offer a place where we, the users of this experimental drug could exchange information about side effects, efficacy and find others who are taking it thus enabling comparisons with other medications.
    Hi Doblett and other users;

    You say about sharing information between users but it seems to me that odd people pop up and say a similar thing and not talking to each other about things etc. I could be wrong as I've not read the whole thread.

    It appears to work on some people but we've never heard from any that it did not work for. It doesn't seem to be available to us.

    Are you still getting a supply?

    Love Terry

  3. #303
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    Hi all,
    First time poster but please don’t hold it against me Ive been following this debate for a while and think I can add something to it.

    The first thing is that MND is so horrible, I don’t think anyone who has experience of it would taunt or deliberately upset others affected.
    If people taking RCH4 believe it to be beneficial then it is understandable that they would shout about it as much as they can to get more support for the drug - I think pro RCH4 folks are trying to increase the chances of this drug getting backing and therefore being made more widely available. Whilst it is upsetting for those not on the drug to read about improvements, pro RCH4 people are acting logically not maliciously. That’s how I perceive it anyway.

    My second point is about whether the drug works. What I would love to know is how many people have taken RCH4 and not seen any improvement? We are of course unlikely to hear from these people because sadly their condition deteriorates. But this is the key - are those posting positively about RCH4 the lucky ones who would have seen a plateau anyway? We know from renowned researchers that MND is a complex interaction between genetics and environmental factors and progression isn’t always linear.

    It is all about statistical analysis and the only ones who can really shed light on efficacy are the people behind the drug who are not transparent - they were invited to share results at the Symposium in Glasgow - they did not take up the offer and that is the thing we should be frustrated at (not with each other).

    Oh and just to add...I would also like to be satisfied that the people behind the drug are analysing it in a fair way e.g. not providing it to a younger age group Who tend to survive longer anyway and comparing survival times against the general MND population (for example). I expect these kind of questions on trial robustness would have come up at the Symposium.
    Shame they weren’t there.

  4. #304
    Forum Member Terry's Avatar
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    Hi Mike O, and welcome to the forum;

    It would be nice to know a bit more about your involvement with Mnd. You are right, that it is such a shame that they could not get any representative, even someone taking it to the Symposium in Glasgow.

    I know if I was on it and it stopped my progression I would make every effort to represent it.

    Most of the people that were on it that posted here were very sketchy with any personal details other then their results which is a bit worrying,

    Please introduce yourself if you feel comfortable doing that.

    Regards Terry

  5. #305
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    Hello Terry,
    Thanks for the welcome. My background is that I’ve met many people with MND through work and have always been inspired by their strength in the face of the immense adversity that MND brings and that has made me fundraise for the MNDA.

    I’m conscious I don’t have as much of a personal connection compared to most on the forum ie I don’t have the disease or have a family member with it so I hope my previous post didn’t come across as preaching.

    It’s nice to (virtually) meet you.

  6. #306
    Forum Member Lynne K's Avatar
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    Hi Mike O. I had said that I would avoid this thread and not post. But I read your contributions and felt like responding. I'll attempt to do so briefly.

    I searched online for information on RCH4. On the website of the charity that has been funding the drug they state that they are a group of doctors and have run out of money to fund more RCH4 for other people. Although they are still involved in prescribing RCH4 to the original participants and have asked them to keep sending in their charts. They have not done a double blind trial and have no current plans to do so.

    Secondly, the fact that any of those involved in this irregular trial did not take up the invite of attending the MND Symposium sets alarm bells off for me. More so seeing as they have yet to make contact with the MNDA.

    Thirdly. You have a point in that people who have had a good response to RCH4 would want to shout from the rooftops about it. But it doesn't add up that none of them have given any background information about how their MND started or anything else. This sets off another alarm bell for me because most of us are open and forthcoming in an effort to both give and receive support.

    Fourthly, I'm not sure that your right about young peoples MND deterioration being slower than older people. I think that it's much more variable than that. I've read on the MND Facebook page about lots of younger people's demise after a relatively short battle. Whereas I'm 65 and have comparatively slower ALS. Anyway even if you were right surely any possible treatments ought to be offered equitably and not be dependent on age.

    Thank you for your fund raising efforts for the MNDA. Lynne
    Last edited by Lynne K; 31st August 2019 at 11:43.
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  7. #307
    Forum Member Terry's Avatar
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    Hi Mike O;

    Thanks for that and it didn't come across as preaching to me, just a educated level response.

    I thought that you perhaps worked for the Mnda as a volunteer or branch member, Etc.

    Good that you don't know any family etc that has Mnd which makes it even more remarkable that you raise funds to help us.

    Thank you for that and you input here.

    Please feel free to ask any questions or share things with us but maybe on a different thread or start one yourself.

    Love Terry

  8. #308
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    The Charity's objective is to find financing for the formal clinical trials. At present, a pre-trial, through a voluntary adhesion is carried out around the world, at no cost to the users. I am one of the lucky persons that receive the drug.
    They sent an abstract and proposed an oral presentation. Were invited to make a poster presentation instead. Ridiculous, given the interest of the subject and statistical evidence of success. I worked for 35 years in academic research and proposing poster instead of oral presentation is considered as downgrading for lower quality research.
    It is unfortunate that the Chief Executive of the MND Association never heard of RCH4. It has a very high profile being top of the ALS Untangled list and top of the Patients Like Me (PLM) efficacy table for years. PLM is the most important platform for accurate information on MND treatments. Perhaps RCH4 is the most discussed investigative new MND drug of all.
    RCH4 posters are not trying to frustrate or taunt others on the forum, only trying to exchange/compare safety and efficacy information, hoping that the drug survives the unjustified hostility, and becomes available to everyone worldwide. That needs money, but unlikely if it is continually attacked. A promising drug fatally undermined by the community which should be interested in speeding the formal trials.

  9. #309
    Hi Dobblet and IONAL

    Roughly, how many people worldwide are using RCH4 ?

    Thanks

    Dave

  10. #310
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    Quote Originally Posted by Kayleigh View Post
    Is the charity currently accepting any more patients for the 'pre-trial' you mention in your post? I happen to know, from reading information on the RCH4 charity website, that the charity is not. But not everyone reading your post will know that (especially not people who are new to the forum). Please could you and others posting about the merits of RCH4 make it clear in all posts that - RCH4 IS NO LONGER AVAILABLE!

    Whether intentionally or not, some posts on this thread have caused a lot of distress and upset for many people suffering from MND, who have got their hopes up about being able to get the drug, only to have their hopes dashed when finding out that it is no longer available. Posts like yours often cause a lot of annoyance, anxiety and distress because they fail to make it clear that the RCH4 charity is not currently accepting new patients.

    Kayleigh
    The subject of my message was different, namely the unexplained hostility towards the life prolonging product. So your criticism is not justified.
    I am not updated by the charity about the availability of the drug , but may suggest that they put it at the web page.

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