Page 35 of 38 FirstFirst ... 253334353637 ... LastLast
Results 341 to 350 of 376

Thread: Rch4

  1. #341
    Forum Member
    Join Date
    May 2019
    Location
    United Kingdom
    Posts
    12
    Hello nunhead_man. We must rejoice that we have an expert on charities contributing here.

    However, the web site you refer to above has nothing at all to do with the RC Charity. It is a site run by PALS who take RCH4.

    It is imperative to carefully study the Internet before making postings. Very few of us do, as evidenced in this thread.

    The Internet is a two-edged sword. We need to be careful what we say as information is available to cross reference. Whereas one can understand your angst, it is unacceptable to attack an innocent charity, the only one to have given anything to us for free. At that time, they were accepting anyone who asked them for help. They could not provide you with RCH4 as you did not have a written diagnosis confirming MND.

    I previously said that I would say no more, however the unwarranted and uninformed hostility from everyone I cannot let pass.

  2. #342
    Forum Member
    Join Date
    Sep 2012
    Location
    USA
    Posts
    3,335
    Originalthought

    That is an extremely condescending comment to make. People here are dealing with enough on their plate and don't need to listen to that kind of attitude.

    If you can't take the heat get out of the kitchen. People here are entitled to their opinions and to ask questions about the so called 'Charity'. Maybe its about time the 'Charity' are the ones who man up, and show up, and get behind their wonder drug so all this controversy over who they are and their drug could be put to rest.

    I really hope mnda freezes this thread, it really serves no purpose other than upsetting people.

    Sincerely
    CC xx
    Last edited by ccinjersey; 6th September 2019 at 15:45.
    .

  3. #343
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    7,823
    Quote Originally Posted by originalth
    ought;92267
    Hello nunhead_man. We must rejoice that we have an expert on charities contributing here.
    I find this comment contains;-

    8.4.1 offensive and inflammatory wording

    8.4.3 and also abusive and causes needless anxiety;


    8.4.4 It violates good morals and practice;

    Terry
    Last edited by Terry; 8th September 2019 at 12:59.

  4. #344
    Forum Member
    Join Date
    Mar 2018
    Posts
    2
    Hello everyone, my father has been taking RCH4 for the past 18+ months.

    I have reported about my experience quite a bit and documented the treatment regimen on the PatientsLikeMe site. You can view my profile there here if you wish to read further: https://www.patientslikeme.com/members/meffordh

    The reason I am posting is because, like many, I read every forum thread in existence about every treatment modality I could find with any possibility of efficacy when I found out what the progression of this disease looks like for most people... and the negativity I found throughout many threads on many treatment modalities nearly dissuaged me from trying to obtain the drug from the charity. Thankfully, enough people posted enough messages and enough witnessed the efficacy of treatment that the positive evidence was insurmountable. Here's a visual I pulled from patients like me showing the efficacy of some treatments, the dark green in the bar chart on the left is the stated % of people that perceived the treatment efficacy as "Major", as the bar gets lighter in color, it goes to Moderate, Minimal, etc. This is real patient accounts of their personal views of efficacy. The image shows, 88% or (100 of 123) treatment evaluations show major efficacy for RCH4, compared to 2% for Edavarone (1 evaluation of 66) and 2% for Riluzole (16 of 420) at the time of this writing. I am writing only to tell those who read it, that my view and certainly my father's view is exactly what you see. This is based on my father's rate of progression, which is also noted in the second image below, as he's only progressed -1 point on the ALS-FRS scale in 18 months he's taken RCH4.

    I hope this information gives the drug a chance at being available to all in the future, sincerely.

    PLM_Evals.jpg

    meffordh-rch4-aug.jpg

  5. #345

    ALSFRS - R plot

    Attached is a plot of the ALSFR-R score of an MND patient taking Riluzole. It looks rather similar to the one meffordh just posted.

    Doug
    Attached Images Attached Images

  6. #346
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Posts
    3,318
    Ooh, how wonderful Meffordh.

    Please tell me where I can get RCH4 so I don't die so soon.

  7. #347
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    7,823
    Quote Originally Posted by meffordh View Post
    Hello everyone, my father has been taking RCH4 for the past 18+ months.
    Hi Meffordh;

    Sorry to hear that it is your father that has Mnd because from your earlier post I thought it was you. I really hope that someone in your family has Mnd, as we all do. Pleased to hear that he is doing well on RCH4.

    But another ambiguous post by someone unknown, who does not live anywhere doesn't do RCH4 any credit at all and just puts more doubt on this whole thing.

    Ellie, I never thought you would ever go so low as to slip into sarcasm, LOL.

    Love Terry
    Last edited by Terry; 7th September 2019 at 13:09.

  8. #348
    Forum Member
    Join Date
    Jun 2017
    Posts
    18
    This is intolerable. Moderators please note.

    Ellie said
    Ooh, how wonderful Meffordh.

    Please tell me where I can get RCH4 so I don't die so soon.

    This is unworthy of you Ellie. For two years you have made hostile postings about the drug and the charity who supplies it. You now ask where you can get it. You knew exactly where two years back and you did not ask for it when the charity had funding and were accepting everyone without question, provided that the patient had confirmed diagnosis, their doctor’s permission and some other paperwork such as patient informed consent etc.

    ccinjersey said
    That is an extremely condescending comment to make. People here are dealing with enough on their plate and don't need to listen to that kind of attitude.

    If you can't take the heat get out of the kitchen. People here are entitled to their opinions and to ask questions about the so called 'Charity'. Maybe its about time the 'Charity' are the ones who man up, and show up, and get behind their wonder drug so all this controversy over who they are and their drug could be put to rest.

    I really hope mnda freezes this thread, it really serves no purpose other than upsetting people.

    cc: Kindly refer to my comments below. Your above statement proves them right. You are out of order.

    Terry said
    I don't think that Nunhead has said that he is a "Expert" in any field let alone charities.
    Yes, he did.

    I find this comment contains;-

    8.4.1 offensive and inflammatory wording

    Absolutely nothing offensive or inflammatory. The person only said how good it is to have an expert on the forum and pointed out the truth that contributors fail to study the internet and the information available there before they start typing uninformed posts. Those who shout that there is no information fail to study the charity website. Takes maybe a couple of hours. In my opinion, although their site is not very professional in presentation, their welcome page is the best and most comprehensive source of unbiased and comprehensive information on the disease, particularly for those who are newly diagnosed.

    8.4.3 and also abusive and causes needless anxiety;
    Terry, There is no abuse. May I say that your uninformed hostility and that of ccinjersey and others is causing terrible anxiety to those of us who are relying on the continued availability of RCH4.
    Posters here say it is “all very worrying”, “very distressing”, “upsetting” and so on. They do not take the drug, and some are not even a PALS themselves. About two years ago someone started this thread as a place to exchange information with others who take the drug RCH4. Then everyone came crashing in shouting “SCAM”, making untrue allegations and innuendos.
    Terry, you (and others) keep referring to mystery ambiguous people. There are numerous RCH4 users both here and elsewhere, who have elected to go public and waive their right to anonymity having invited anyone to contact them and they are willing to provide their clinical files and even to meet up in person. Just one example: “mndmarlon” posting here on July 2nd. 2018. So everyone, please either contact them or stop making the `unknown` allegation.

    8.4.4 It violates good morals and practice;
    Examine the post above by ccinjersey.
    The lady has made 31 hostile postings on this thread doing all she can (like others) to get rid of the only drug that is efficacious in this disease. She does not suffer this disease and face death – but we do.
    She has even gone to the trouble to comb the internet and re-published the totally untrue allegations of an obnoxious internet activist and troll, Eric Valor, who collapsed the charity after he published the catastrophic libellous headline NEW-DRUG NEW-SCAM without any evidence, without doing any research, without contacting the charity or even anyone using the drug. Over all the years, nobody using the drug has said one word on any blog or forum worldwide against the charity.

    These thread activities by posters are wholly immoral as they threaten our lives by undermining the drug we rely on. It is those who continue this witch hunt against the charity and collapsed their funding who need to examine their conscience.

    People repeatedly ask why the drug has not been approved. A million Dollar cost. Where is the money to come from now after all the damage done?

    Doug said
    Attached is a plot of the ALSFR-R score of an MND patient taking Riluzole. It looks rather similar to the one meffordh just posted.
    With due respect, for goodness sake that comment is nonsense. One Riluzole patient. There are hundreds of RCH4 patient reports.

    12 published papers about Riluzole in The Lancet show no slowing in clinical functionality decline (the ALSFRS-R score), which is undoubtedly the most important aspect because slowing of the score decline means longer life expectancy. https://www.thelancet.com/journals/l...091-7/fulltext Riluzole extends life for some by 12 weeks (8%).

    According to hundreds of worldwide patient reports over years, RCH4 extends life by some 270%, and indefinitely for 5% of patients.
    Someone pointed out (a recent post above) and posted a screen shot of the independent reports of efficacy of both RCH4 and Riluzole on PLM which is a stand-alone independent website run by United Health, a major public insurance company in the USA. RCH4 a scam? Impossible.

    “Major efficacy”: RCH4 88%. Riluzole 2%.

    Say no more. QED.

    Having read through the postings here, as far as I can see, every question (many repeatedly asked) is answered on the charity website. If you want answers, their site must be carefully studied.

    It is unbelievable that the only effective drug which was scheduled to be available to everyone worldwide by now has been consigned to the dustbin of history by PALS themselves by destroying the funding for it. Attacking a charity is beyond the Pale. How many here have given their own money directly to another PALS who they never met?
    Thanks to all the nay-sayers and trolls, the charity now has no money to accept any new people. The MND community have not only shot themselves in the foot, but us as well.

  9. #349
    Forum Member
    Join Date
    Nov 2014
    Location
    Epworth
    Posts
    101
    Still can't find a link to the Charity registration in the US - can you help me out with that Doblett?

    Chas

  10. #350
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    7,823
    Quote Originally Posted by Doblett View Post

    Terry said
    I don't think that Nunhead has said that he is a "Expert" in any field let alone charities.
    Yes, he did.
    Thankyou for pointing that out Dobett,

    I was wrong and have amended my post. I apologise for the error.

    Love Terry

Tags for this Thread

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •