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Thread: WARNING, RCH4 Charity Web sites

  1. #1
    Forum Member Terry's Avatar
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    WARNING, RCH4 Charity Web sites

    before you go on any of their links or web pages etc, WARNING

    Please be aware that your information and details could be passed on if you go onto their links and web sites.

    They have used the information gathered from their web site or links to use against one of our members, showing the dates, times and length of time they have visited their pages. This is not the first time it has been used in a belittling and nasty way.

    I'm sure this would be against any reasonable rules and general good internet practice.

    Best wishes, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  2. #2
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    Thank you for sharing that information Terry.

    CCxox
    .

  3. #3
    Forum Member Lynne K's Avatar
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    Hi Terry, I clicked on the link that the 'ex doctor' put up. I can't remember his forum name just now, maybe 'onein400' or similar. That was a few days ago and before your post. I didn't input any details, just read an account of the trashing of RCH4 's doctors reputations by big pharma scientists and their counter arguments. I hope that they didn't leave any spy ware on my phone. Lynne
    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.

  4. #4
    Forum Member Terry's Avatar
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    Hi Lynne;

    I don't think that he would do that but he could have your phone or computers internet address. I don't think that you have anything to worry about with him.

    It's just concerning that he is taking confidential information with restricted access and using it elsewhere. It is unscrupulous behavior.

    Onein300 is a completely different person who I trust, I don't think that he has any input on the Rch4 thread

    Love Terry
    Last edited by Terry; 23rd November 2019 at 23:20.

  5. #5
    Forum Member Lynne K's Avatar
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    Ok, thanks Terry. Lynne
    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.

  6. #6
    Forum Member Lynne K's Avatar
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    Hi Terry. I've just looked through previous messages. It was the links put up by originalthought (and not onein300 who does a great blog and gives links to smashing information) that I read all of, taking me ages perhaps an hour. What struck me was that big pharma had ostracised the RCH4 community, in a holier than thou way. I don't say that the RCH4 community are totally correct in their habits. There's no published research in the traditional sense, and only, as far as I can see individual peoples records.

    In a perfect world big pharma would offer the small charity involved in RCH4 to put this drug through a traditional trial, phases 1,2 and 3. But they aren't going to do that are they? That's to do with power, money and reputational concerns, which is a sad state of affairs. Lynne
    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. #7
    Forum Member Terry's Avatar
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    Hi Lynne;

    I think that the RCH4 community ostracised them selves here by failing to answer simple questions and failing to build up any trust by talking about how Mnd has affected them, along with how it started.

    It is a shame because if they had done it differently, Cc's friend who was extremely rich would have benefited from it and she along with me would have contributed towards it. I'm sure that others on this forum would have taken it too, along with me.

    But many of us smelt a rat.

    We are desperate people, many of us will try anything like "Stem cell treatment" all those places promise a cure too but none have succeeded in doing it.

    Just hypothetically, if I come across a tablet that I said improved me and said it's free via a charity. And other people made up by me also said the same . (not real people) Then I said that it is too expensive to put through trials etc.
    Would you not want to support that charity. The trouble is that I won't disclose that they are just cheep vit C tablets from the pound shop. My get rich quickly idea.

    I'm not saying Rch4 are doing the above but there's so many similarities. Just saying.

    They were and are their own worse enemy IF they're for real.

    Love Terry

  8. #8
    Forum Member Lynne K's Avatar
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    Terry, we are all eager to get some treatment that works but have to be cautious indeed. Onein300 put a link to research done about 4 years ago on his last but one blog. I only read the research today and it was very clear that 25% of ALS sufferers have plateaus where they don't deteriorate for different lengths of time, I think most are short. A further smaller percentage, I think 13% recorded improvement. The conclusion is that care ought be taken by researchers of treatments for MND /ALS that what they are seeing is more than the statistical variation in deterioration. So a good deal of scepticism is healthy until it can be proven that more than 25% plateaus and more than 13% improve on the treatment before they get all our hopes up that they've found a 'miracle cure.'
    Lynne
    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.

  9. #9
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    Hello everyone I am a user of rch4 given me by the charity.

    I would make a couple of comments. Every web site we look at records everything (but not who we are) and the law says that every web site must tell us that it records information and if we dont want this we must leave the web site or "opt in" to agree.
    On some sites we can see visitors to that site in real time.

    Lynne said "I only read the research today and it was very clear that 25% of ALS sufferers have plateaus where they don't deteriorate for different lengths of time, I think most are short." I believe it to be 2 - 3 months before resuming again. From their web site the average for rch4 is (I think) 30% of their PALS stabilise for 6 months or longer and 50% for 4 months or longer. In my case since starting on it couple of years back, staying stable so obviously I believe it is correct if not an understatement.

    I am shocked to learn that the MND Association had no interest in rch4 when it was offered to them as a humanitarian gift a few years ago, I hope someone will ask them about this at the ALS convention in Perth this week.

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