Rch4

[originalthought]

That is so sad. So much goes towards cancer research and their advertising yet MND is just as devastating.

Yes the whole MND scene is sad.
This makes interesting reading.
https://www.als-new-drug.com/difficulties

Also the drug has had the highest number of votes ever on ALS Untangled for years.
http://www.alsuntangled.com/open.php

Yet it is ignored by the establishment.

My own experience
zM (2).png

[Lynne K]

Thanks for sharing your info originalthought, and the links. I hope for the rolling out widely of RCH4 very soon so double blind trials need to get a move on. Is it a trial that you have been on or what? Lynne

[originalthought]

Thanks for sharing your info originalthought, and the links. I hope for the rolling out widely of RCH4 very soon so double blind trials need to get a move on. Is it a trial that you have been on or what? Lynne

Lynn, no it is not a clinical trial. A charity supplies rch4 free of charge when they have funds. After malicious posters untruthfully said it is all a scam, their funding dried up and we are worried if we will continue to be able to get it.

[Lynne K]

Ok originalthought. I hope that it gets looked into by well qualified scientific researchers very soon. Lynne

[originalthought]

Ok originalthought. I hope that it gets looked into by well qualified scientific researchers very soon. Lynne

Lynne the charity are all unpaid doctors and scientists see here

[Sportingmac]

Lynne the charity are all unpaid doctors and scientists see here

Wondering what they were specialising in? Who is the Pharma company making the drug? All a little too vague for me I'm afraid.

From the disclaimer "Nothing in this web site may be considered to be medical advice." So what is it the website is claiming?

Need answers.

[originalthought]

Wondering what they were specialising in? Who is the Pharma company making the drug? All a little too vague for me I'm afraid.

From the disclaimer "Nothing in this web site may be considered to be medical advice." So what is it the website is claiming?

Need answers.

Sportingmac, you have appeared elsewhere as a nay-sayer. You do not take the drug so nothing for you to be interested in or be afraid of.

They are an unpaid charity and they make clear that they make no claims whatever.

There is separate website run by PALS themselves who take RCH4
http://rch4als.com
RCH4 has the highest number of votes in the history of ALS Untangled
http://www.alsuntangled.com/open.php

From PALS own reports on the Internet

[Puddy]

Just a thought, and you may have already tried this, but could we bombard our MP's with this?

[Ellie]

You do not take the drug so nothing for you to be interested in or be afraid of.

Originalthought,

You surely must realise how vile it is for you and your ilk to taunt valued Forum members with a product which is simply not available.

You, and others like you, join this Forum simply to tell us all how wonderful this elusive product is, knowing full well that not one person reading your effusive posts will be able to source the product - you are being beyond cruel.

I urge you, and the others like you, who join the Forum only to post in this thread, to take a good look at your conscience before you write one more word on this topic. You may as well be extoling the virtues of unicorn milk to us and it is not acceptable to treat us with such contempt.

Ellie.

[ccinjersey]

This drug has been sketchy from the beginning of this thread right up until now in my opinion.

More to the point the so called 'Charity'. Who are these doctors, and scientists working for free on a drug they make no claims will work, but are seeking money to continue to fund their work ????

Why all this cloak and dagger stuff from the Charity??? If they have created a drug that those taking it claim is actually working why have these brilliant doctors, and scientists not come forward ?? They have done something no else has been able to do. Why are they hiding in the shadows ???

Its also very sketchy to me random forum members suddenly join this forum only to promote this drug.

...And why do the random forum members that suddenly pop up on this thread to rave about this drug criticize, and question the existing forum members here for questioning them ???

Why has the Charity and drug been labeled a scam ???

Just my observation, opinion, and confusion of this drug.

Wishing all those taking RCH4 much success with it, maybe the rest of the ALS/MND community will have access to it with real proven, and positive results

CCxx

[Sportingmac]

Sportingmac, you have appeared elsewhere as a nay-sayer. You do not take the drug so nothing for you to be interested in or be afraid of.

They are an unpaid charity and they make clear that they make no claims whatever.

There is separate website run by PALS themselves who take RCH4
http://rch4als.com
RCH4 has the highest number of votes in the history of ALS Untangled
http://www.alsuntangled.com/open.php

From PALS own reports on the Internet

Originalthought - I am being realistic and pragmatic. I can make a spreadsheet say whatever I want - quite easy really. There are variants of MND - some fast progressing some slow progressing. Which variant are your spreadsheet from?

I live in hope that a cure can be found but realistic enough to have reservations that it will work on everyone. Not everyone gets cured from cancer!

But you haven't answered my questions - so come on - what are the specialisms of he doctors? and what research have they published? and who is the Pharma who makes this under licence?

Time for you to post evidence not opinion.

[Terry]

Hi Sportingmac;

I try to stay off this thread because I don't know much about it.

Sportingmac, you have appeared elsewhere as a nay-sayer. You do not take the drug so nothing for you to be interested in or be afraid of.

Not quite sure what a Nay-sayer is so I can't comment on that. I don't like people putting labels on people. How can anyone say that you are not interested in possible cures for Mnd on the Mnda forum, what a ludicrous remark.

I've always valued your straight forward posts.

We just hope it is proven to make a difference, like you and many other valued members of the forum I am highly skeptical.

Love Terry

[Jer788]

Well said Ellie, my sentiments exactly.
Love Jerry x

[Doug Carpenter]

I'm all for free speech, but I'm wondering if it is worth asking MNDA to consider banning this thread for the reasons Ellie states so eloquently.

Doug

[IONEL]

Dear all,
I am taking RCH4 since July 2018.
I was diagnosed with ALS in March 2017 and in 1 year my evolution has been declining rapidly. In May 2018, I had a collapse, getting the tracheostomy and mechanical ventilation for breathing, weight 44 kg.
After starting RCH4, my condition got better, gaining weight (over 8 kg), can walk, can type. My score is not high but it is stable.
I am very grateful to Charity group and I wish that more patients to have the chance to get RCH4 drug.
This is my chart:
Chart.jpg