Page 34 of 41 FirstFirst ... 243233343536 ... LastLast
Results 331 to 340 of 401

Thread: Rch4

  1. #331
    Forum Member
    Join Date
    Aug 2019
    Location
    Romania
    Posts
    6
    Dear Terry,
    Did I ever say that I am from Dublin?
    No, far away from Dublin!
    What is you point?

  2. #332
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    5,285
    Thanks Ionel;

    The reason I said that I know you're not from Dublin, is because originalthought said that no-one has applied for the drug from there. I was also being a bit sarcastic, to show my point.

    My point is one reason why this thread has failed. Most, if not nearly all of you that have posted positive comments and graphs etc, have not posted where they are from.

    That is why I said that, I'm afraid by most of you being so ambiguous, having strange names, not really talking to each other and showing similar looking results, etc, makes any claims very dubious.

    We have had many countries post on the forum but I can't remember any from Romania.

    Welcome to the forum.

    To me, it would make good sense to stop this thread and start a new one with people saying who they are etc. Saying the currant situation with you's and the availability of the drug to you and others like me.

    It would be even better if others that had problems and stopped would post to get a bit more of a balanced thread.

    Just my uneducated thoughts.

    Love Terry

  3. #333
    Forum Member
    Join Date
    Nov 2014
    Location
    Epworth
    Posts
    88
    Quote Originally Posted by originalthought View Post
    Again thank you Terry. You said

    If the company, (group) contacted you, why don't they have a presents here in a passive form, they must be reading it.

    Please read my post. I said I contacted the charity, not the other way around. As nobody bothers to study the information on web sites or in postings before they hit their keyboard, I do not propose to say any more. It is clear that nobody wishes to hear about anything that is safe and is efficacious and resents PALS exchanging information which is the objective of a forum. Extraordinary in view of the fact that to date there has been no other effective treatment for MND.
    I previously offered a link (above) to a Utube documentary which appears to confirm that this attitude is universal.

    Thank you all.
    I have tried to find where the 'charity' is registered in the US - no luck so far. Perhaps you could help me out here?

    Kind regards

    Chas

  4. #334
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    5,285
    Hi Chas;

    This thread has been running for well over 2 years but we still don't know the basic facts. I would have thought that info would be one of the first things posted. We are not asking for the formula details.

    It's all very worrying.

    Love Terry

  5. #335
    Forum Member nunhead_man's Avatar
    Join Date
    Jul 2017
    Location
    London
    Posts
    503
    Hi,

    Speaking is a charity expert of some long-standing the designation of "informal charitable organization" is meaningless.

    I take this from https://rch4als.com/rch4-charity

    An organisation is either charitable or it is not according to the terms of the 2016 UK Charities Act.

    Such an organisation needs to register with the Charity Commission if it earns more than a certain amount of money each year - 5000 if unincorporated, straight away if it is incorporated.

    Any registered organisation needs to quote its proper name and registered numbers on its website to meet the requirements of the regulations.

    Warmly
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

    "Things turn out the best for people who make the best of the way things turn out"

  6. #336
    Forum Member
    Join Date
    May 2019
    Location
    United Kingdom
    Posts
    20
    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.

  7. #337
    ccinjersey
    Guest
    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 14:45.

  8. #338
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    5,285
    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 11:59.

  9. #339
    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

  10. #340

    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

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
  •