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Thread: Rch4

  1. #301
    Forum Administrator Admin_MND's Avatar
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    Good afternoon,

    We’d like to remind all members that this is an open forum supporting a wide range of topics and all users are welcome to comment and contribute. No thread is exclusive to a particular group, nor are members excluded from contributing to any topics. We do encourage that you review topics and choose whether the subject is something you wish to engage on. We do moderate the forum and will remove any content that goes against our terms of use.

    As a charity with the vision of a world free from MND, the MND Association welcomes any discussion about research into potential treatments and ultimately a cure for this brutal disease. We have reviewed this thread and feel that it would not be appropriate to remove it.

    We have previously shared our stance on unproven treatments on this forum. Like many of our members, we are very keen to understand more about RCH4 and to engage with the people behind it. We were hoping to meet them at our 2018 Symposium at which they were invited to share their work with the international research community in our poster presentation session, but they withdrew before the event.

    We would welcome the chance to talk to them and to discuss any ongoing research they are undertaking and any validated data they are able to provide – by which we mean results that have been managed or checked by an official body, clinician or neurological centre with research credentials. In the UK this could include an MND Association funded care centre for instance. This validation is standard international protocol for researchers to ensure transparency, safety and credibility.

    As always, we urge people with or affected by MND to consult with their doctor, or other relevant professional, before making any decisions about treatment.

    Many thanks,

    Forum admin

  2. #302
    Forum Member Ellie's Avatar
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    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.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  3. #303
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    Hello Mnda Admin.

    It's good to hear your position on this thread, and RCH4.

    That is exactly the part that specifically confuses me about this drug is 'The Charity' themselves. You stated they were invited to share their research, but withdraw before the event.

    Why ?

    They have a drug that those taking it 'state' is slowing down their progression effectively. So who, and where are these brilliant doctors, and scientists that prefer to remain in the shadows, but generously give out their drug for free to only those that can obtain access to it ?

    If The Charity is seeking funding to continue producing their drug, why are they not stepping forward, and telling the entire medical field, and ALS/MND community what they have discovered ??? Wouldn't the 2018 Symposium be their platform to do this? yet they declined to show.

    It makes no sense to me????

    I also find it very sketchy that these random forum members on this thread just pop up here to only 'promote' this drug. These forum members may protest that's not what they are doing, and are only here to share their knowledge, and experience with this drug, but the reality of it is they are here peddling a drug that no one has access too, and they 'claim' is working. I too would have to agree that is cruel, and selfishly unjust, and unfair to those living with this illness.

    CCxx
    Last edited by ccinjersey; 30th August 2019 at 16:42.
    .

  4. #304
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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.

  5. #305
    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

  6. #306
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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.

  7. #307
    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

  8. #308
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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.

  9. #309
    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 12:43.
    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.

  10. #310
    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

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