Page 34 of 38 FirstFirst ... 243233343536 ... LastLast
Results 331 to 340 of 376

Thread: Rch4

  1. #331
    Forum Member
    Join Date
    Sep 2012
    Location
    USA
    Posts
    3,329
    For what its worth in my personal opinion, this thread serves no purpose.

    Why continue to give those pop up members that are here to solely promote a drug that is not available, and has no clinical support to prove its effectiveness a platform ?

    As Terry pointed out they are not exchanging information with one another, and as Ellie stated they are already posting on Patients Like Me.

    They serve no purpose here other then to upset long standing forum members whether it be intentional or not.

    MNDA stated the 'Charity' declined to show up at the 2018 Symposium, if these doctors, scientists and researcher are not willing to stand up for, and stand behind their wonder drug themselves what is the point of this thread to continue on ?

    CCxx
    .

  2. #332
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    7,813
    Hi lonel,

    We know you're not from Dublin, so that narrows it down a bit.

    Love Terry
    Last edited by Terry; 3rd September 2019 at 16:38.

  3. #333
    Forum Member
    Join Date
    May 2019
    Location
    United Kingdom
    Posts
    12
    Hello Terry and thank you for your post as follows

    Most of you don't even put a country let alone a area.

    Sorry, I have corrected this oversight. I am in the UK, diagnosed 2014 and a retired GP.

    You say 'We have never had a enquiry from Dublin', so I assume you are in the company that destributes it and not a Mnd sufferer.


    Re Dublin, I did not say that, the charity told me today. Please study my post. Also you assume incorrectly. There is no company, it is provided by a voluntary charity to who I owe a great debt of gratitude

    Others here have asked questions like how many people are and have been taking it and how many people it did not work for.
    Study their web site. It is all there and they also say that 14% are non-responders

    Also it would be good to why the people stopped taking it.
    There is one reported case of voluntarily stopping on the PLM forum. I have no other knowledge

    Excuse my sarcasm but if you privy to the Dublin info then why not the rest.
    I only asked them about Dublin because I am saddened by the upset endured by Ellie

    Also, if you haven't, please make your position clear as to your involvement with the drug.
    No involvement at all other than as a user who is provided it for free by the charity. This may stop due to the uproar generated by those who wish to see it ended and the untrue allegations of it being a scam. Little wonder that charity funding collapsed and no money now.

    Edit addition. My attention has recently been drawn to a Utube documentary about the hostility to new drugs
    Last edited by originalthought; 3rd September 2019 at 16:58. Reason: Added a Utube video link which is interesting

  4. #334
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    7,813
    Sorry that you have Mnd,

    Where abouts in the UK are you.

    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.

    I have not followed this thread because of those reasons.

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

    It has always been a ambiguous thread, such a shame for everyone concerned.

    Love Terry

  5. #335
    Forum Member
    Join Date
    May 2019
    Location
    United Kingdom
    Posts
    12
    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.

  6. #336
    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?

  7. #337
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    7,813
    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

  8. #338
    Forum Member
    Join Date
    Nov 2014
    Location
    Epworth
    Posts
    101
    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

  9. #339
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    7,813
    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

  10. #340
    Forum Member nunhead_man's Avatar
    Join Date
    Jul 2017
    Location
    London
    Posts
    378
    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

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
  •