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Thread: Rch4

  1. #291
    Forum Member Terry's Avatar
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    At least we can agree on one thing Ellie

    Love The Cat

  2. #292
    Forum Member Kayleigh's Avatar
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    I think its inappropriate and insensitive that the MNDA's forum is being used to promote a drug that is no longer available.

    Kayleigh

  3. #293
    Forum Member Barry52's Avatar
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    Maybe the MNDA would like to sponsor this “wonder drug” company since they have run out of funding, but only if it would help us, their members. I appreciate it is not an approved drug and I recently mentioned it to Sally Light when we met. Sally had not heard of it and she was going to discuss with her colleagues.

    I respect Ellie’s comments and I have shied away from posting on this topic but I feel it’s time to make my position known.

    Barry
    I’m going to do this even if it kills me!

  4. #294
    Forum Member Kayleigh's Avatar
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    Thanks for the update Barry. Its interesting that Sally was not aware of RCH4, especially as the MNDA is allowing its forum to be used as a platform to promote the drug, and has been doing so since this 'RCH4' thread started n 2017.

    It will be interesting to see if the MNDA thinks RCH4 merits further investigation and their investment.

    Kayleigh
    Last edited by Kayleigh; 27th August 2019 at 03:57.

  5. #295
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    I’m with you on that Kayleigh. The association is showing a very strange stance.
    Love Jerry x



    Quote Originally Posted by Kayleigh View Post
    I think its inappropriate and insensitive that the MNDA's forum is being used to promote a drug that is no longer available.

    Kayleigh

  6. #296
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    Yes Barry, I too am surprised at Sally's response. I wouldn't discount anything. If you go into 'Community' and then 'Members list' then look up alfadoc you can read what he has posted about RCH4. You have to go to the left hand column to find his posts. He is not a peddler or a quack and he is very happy to talk to anyone on this forum. We are lucky to have him on here and mustn't jump to conclusions. Barry, you can private message me and I can give you further details if you wish or anyone else can for that matter. xx

  7. #297
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    It is very sad that some contributors to this forum consider that those of us who take RCH4 are trying to upset them and this is to be sorely regretted.
    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.

    Instead, what has happened is the thread has been hijacked by, in some cases, nay sayers who know nothing about it, and in some cases trolls untruthfully shouting SCAM. It was these who caused the voluntary funding for the charity who supplies RCH4 to us free of charge to collapse. It is ironic that the first and only drug which actually slows the progression of MND should be hounded out of existence by the MND community themselves. It is also sad that some contributors here are accusing us of trying to promote the drug. This is completely untrue, as we only wish to exchange information.

    Just compare the amazing new drug Edaravone, recently approved in the USA. Everyone was hugely enthusiastic. It does not work.
    Edaravone_study___12_months.jpg
    RCH4 does work and many on the Internet have repeatedly tried to rubbish it.
    als-2-year-117_chart.jpg

    As to the Motor Neurone Disease Association, they have repeatedly refused the charity scientific papers for oral presentation at their annual conferences.
    https://www.als-new-drug.com/cupid
    If they have not heard about RCH4, then they do not follow developments in treatment and research. It has been around for years. RCH4 has the highest number of votes in the history of ALS Untangled and the highest rating of efficacy in the history of the Patients Like Me platform
    I see that the next MND Association conference will be in Perth and there are some 20 plenary oral presentations scheduled. The papers deal with statistics, genomics and mice. Not one of the speakers have ever slowed the disease progression in anyone, But the RCH4 charity has done so for years.

    Please leave this thread as a safe place for users of RCH4 to exchange real life independent information. We do not wish to upset anyone and we are not promoting anything.

  8. #298
    Forum Member Kayleigh'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.

    Instead, what has happened is the thread has been hijacked...

    Please leave this thread as a safe place for users of RCH4 to exchange real life independent information. We do not wish to upset anyone and we are not promoting anything.
    Dear Doblett,

    I hear what you say about not wanting to upset anyone and I don't want to upset anyone either. I wish to wave a white flag in the hope that there can be more understanding and less upset. I'm all for debate and freedom of speech but it seems that there are many similar disagreements going backwards and forwards on this thread and they are not achieving anything positive. Sadly, on this thread, there seems to be increasing frustration, upset and division between many forum members who take RCH4 and many members who don't.

    I am acutely aware that, especially due to Mnd, my life could be snatched away from me at any time and I don't wish to leave this World having fallen out with you or anyone else. Therefore, please excuse me for trespassing on this thread for one last time, to share my thoughts in the hope that it will provide more insight and understanding into my perspective of the situation (as someone who has been diagnosed with Mnd and doesn't have the option of taking RCH4).

    Firstly, I didn't know that only users of RCH4 are supposed to post on this thread. I wish the MNDA would make it clear on the forum and in their forum rules if certain threads are only for certain people to post on - therefore, I would be less likely to trespass where I shouldn't!

    I have never accused RCH4 of being a scam. Understandably, some people (including those who are pleased with their results from taking the drug) need no further convincing or evidence about how effective RCH4 is. However, equally understandable, is the point of view of those people who don't take the seemingly good results posted on this thread and on other websites (including the RCH4 website) as sufficient evidence to be conclusive i.e. it's unrealistic to expect everyone to be convinced that RCH4 is an effective drug, before all the necessary research and dugs trials have taken place.

    You might have thought it unreasonable for me and others to object to the MNDA's forum being used by users of RCH4 for the purpose of posting their results and opinions of the drug. Although I don't have experience of taking the drug, I don't think that I should be excluded from sharing my understanding and thoughts about this issue, which is as follows....... RCH4 is still a drug that is not available for new users and it has been that way for quite some time, and this is what some of the the upset and genuine concern is about - people have read about RCH4 on this forum, got their hopes up about possibly being able to get this drug from the charity and then when visiting the charity website they are hit with the harsh reality that it is no longer available.

    I can understand why you and others find it beneficial to share your experiences of taking the drug on this MNDA forum - but, hopefully you can also understand why reading those posts might lead to considerable upset and disappointment for some people affected by MND.

    Even if non-users of RCH4 are blocked from commenting about the posts on this thread, it is still a forum for everyone affected by MND and so there is still the possibility that people will read about it and get their hopes up because they are not immediately aware that the drug is no longer available.

    This is an MNDA owned forum and so if the MNDA decided to make certain threads exclusively for posting on by certain groups of people then I would respect that. Personally, I would not start a thread with the intention of excluding certain people because that's not in the usual spirit of the forum and I think that everyone should feel welcome to join in on whatever threads they wish to.

    I can understand the frustration about the lack of funding available for MND related medical research, including futher research and trials into RCH4.

    I wish that all Governments and other organisations would provide sufficient funding so that the urgent need to find a cure was taken more seriously by them.

    I hope that nothing I have said in my post has been discourteous or upsetting for you or anyone else. I am going to retreat from this thread now but, before I do, I will wish you well and I sincerely hope your life is as comfortable as possible.

    Love and best wishes to you and everyone in this fabulous family,
    Kayleigh x
    Last edited by Kayleigh; 29th August 2019 at 23:06.

  9. #299
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    Ellie,
    When I joined this forum, I thought it is about RCH4, not anti-RCH4.
    I thought that I can share the experience with other patients, to exchange information, to help and to be helped to overcome this terrible disease.
    I had no intention to offend or upset anyone!
    I do not promote or advertise. This is only my experience with RCH4.
    Maybe we should ask why this drug is not available and the suppliers are struggling to cope with malicious attacks.

    Once again, I don't want to upset anyone; we are all in the same battle.
    Each one has a small voice, but, many voices could be "roar".

    All the best!
    Ionel

  10. #300
    Forum Member Puddy's Avatar
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    This thread comes under the heading of Research and Trials. Of course sufferers and their loved ones are going to look at this thread. I did, when my husband was diagnosed with MND, after only 4 months of having a heavy left leg.

    I was desperate for something to help him, so I asked how I could get in touch with the clinic, then I saw that there was no contact link.

    Maybe the thread title should be changed to RCH4 - users only.




    Husband, Nigel, diagnosed with ALS in July 2019. We live in Spain and the medical care is superb. Nigel currently taking Riluzole. Tried acupuncture/Chinese medicine and bee venom (privately), but not helpful.

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