Old 12-06-2017, 12:05 PM #31 (permalink)
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Default Re: Still here thanks to RCH4

Mike, that’s is well-stated and would be my take on the subject as well.
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Old 12-06-2017, 12:38 PM #32 (permalink)
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Default Re: Still here thanks to RCH4

GregK I said I wouldn’t come back to this forum but I have to respond to your insults. Where in any of my posts have I made personal abusive attacks? My post re Laurie was a critique, nothing more. In your post to me, you start off by saying good riddance, you went on to call me emotionally stunted, ignorant obnoxious and an idiot. We are all in the same boat here. You have upset me immensely and I am amazed no one on this forum has picked you up on your behavior. You don’t know me so you have no right to speak to me this way.


EDIT: Mod Note - Never called you an idiot. gdk

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Old 12-06-2017, 01:28 PM #33 (permalink)
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Default Re: Still here thanks to RCH4

GregK may be a bit gruff at times but I found him right on when it comes to ALS knowledge. And Laurie spends hours and hours volunteering to help us pals with breathing issues. They are both invaluable resources for this forum, so the rest of us get defensive when they are disparaged.

We ALL are in the same boat, waiting, hoping for a cure. But the info you provide and the website are sketchy at best. If rch4 really works that's wonderful news that the whole world will celebrate. Here's hoping that miracle will happen.

Wishing you the best, Jenny
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Old 12-06-2017, 01:30 PM #34 (permalink)
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Default Re: Still here thanks to RCH4

Jenny,

I appreciate your effort to help me and others stay informed about RCH4. I really do.

Both Laurie and Greg are here for us day after day. Greg has had ALS for a long time yet he still tries to help us every day. I honestly believe many PALS have had a much better quality of life because of Laurie. She doesn't need to be here. She is a medical doctor and lost her husband to ALS but she continues to stay here and help.

I think you ruffled some feathers when your first post "critiqued" Laurie. You are the one who started out negatively.

Lots of us were disappointed by the former exchanges regarding RCH4. PALS were hopeful, then frustrated, then confused.

I stand by my comment about Rick Bedlack. He is not my doctor but I have e-mailed him twice about two different things and he got back to me within hours. He is 100% dedicated to PALS and just the fact that he is willing to explore alternative treatments proves he isn't owned by the drug companies.

I'm very sorry you are upset. Something happened to me last week on and off the forum that upset me to tears for several days. I think just having this disease or taking care of someone with ALS stresses people to their breaking point, at times.

I wish you all the best and I really hope you come back with progress reports. And I hope they are ALL good reports. If something is working on enough PALS, it will become available for all PALS. I think we can all agree on that, don't you?

Thank you again for reporting on your success with RCH4.
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Old 12-06-2017, 02:38 PM #35 (permalink)
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Default Re: Still here thanks to RCH4

Thanks for the kind words, Kim. We all try to help each other here, and I think that is why we respond negatively to anyone who seems more interested in "stirring the pot" than improving each others' lives.

A necessary correction, though -- I do not hold an MD. I am a Master's degree-level researcher and have published in clinical journals, delivered medical education, directed product development, etc. in the course of a varied health care career, but Karen is the MD in the house!

Best,
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Old 12-06-2017, 04:11 PM #36 (permalink)
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Default Re: Still here thanks to RCH4

Well, you deserve an honorary MD, so I'm awarding it to you
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Old 12-06-2017, 04:32 PM #37 (permalink)
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Default Re: Still here thanks to RCH4

Agree with Laurie deserving an honorary MD. And yes, while I’m an MD and have board certification in Internal Medicine and Rheumatology, I ain’t no neurologist.
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Old 12-06-2017, 08:17 PM #38 (permalink)
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Default Re: Still here thanks to RCH4

Jenny,

You have to appreciate the fact that RCH4 is shrouded in secrecy. This is probably unique, not just in ALS circles, but in medicine in general.

This secrecy, not surprisingly, generates skepticism. It's seen as evasive. Surely you must acknowledge that, and you should (must?) expect it?

All of us would be thrilled if, as you and a large group of pALS state, RCH4 is a real thing.

But coming into a brand new thread with an attack, or as you say, a critique, is counter productive. It really doesn't matter if it's a Mod or any other user. It's off-putting and sets a poor tone for that discussion, and as you chose to critique a Mod, it put the other Mods in attack mode. And I'm the most acerbic Mod here, as you may have noticed.

I'll be more than happy to read and consider any information you provide, and I'll withhold from attacking if you do the same. Treat the skepticism as a challenge and not as an insult.

Peace.
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Old 12-07-2017, 10:17 AM #39 (permalink)
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Default Re: Still here thanks to RCH4

My mother is on RCH4 for the past 15 months, has remained completely stable and no side effects. I get it for free from the charity who provide both it and support. The drug works. After a long time I have looked again at their web site and their efficacy page is interesting. It is also interesting that they make no claims. IMO they actually understate its performance.
www.als-new -drug.com/efficacy.

As for Laurie the moderator here she says (above) "Naught to do with me" She is wrong. She locked an RCH4 thread on October18 last year 2016, and another RCH4 thread on June 14 2017. Nothing to do lack of postings. Some time back I sent a letter by FedEx courier to the ALS Association Headquarters in Washington DC drawing their attention to her uncalled- for remarks.

The scam allegations by Mr. Valor on the Internet are totally untrue causing the charity to collapse. The unfortunate remarks by Laurie were also a major hit on the charity and the PALS they support. If new funding is not found its the end. This is a worry.
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Old 12-07-2017, 10:37 AM #40 (permalink)
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Default Re: Still here thanks to RCH4

I would also like to share my experience on RCH4,
I was officially diagnosed in April 2017, Like many others I have tried other drugs and protocols but nothing worked. I have been on RCH4 for 5 months now and it has completely halted the progression, RCH4 has zero side effects. The charity provides it absolutely free of charge. I have even offered to pay something toward the cost and was turned down. My ALSFRS score virtually stabilized since taking RCH4. The charity is very helpful and professional, they keep in touch with me at least twice a month which is more than what I can say about my neurologist.
I have contacted other PALS taking RCH4 from different parts of the world and they ALL have benefited from it, no one out there tried RCH4 and come out to say it doesn’t work or it’s a scam. Many PALS including myself have registered and evaluated RCH4 on PLM. https://www.patientslikeme.com/treat...s-and-efficacy
RCH4 WORKS, I lost my left arm to ALS and the only reason I am able to type to you right now is because I started RCH4 before ALS took my other arm. The focus shouldn’t be on the charity, the website, or people behind it, we should be focusing on how to make this drug available for everyone suffering from this terrible disease.
If anyone has any questions I am happy to chat via phone, email or any other means, I have medical records from three hospitals and ALSFRS score sheets to back me up.
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Old 12-07-2017, 10:54 AM #41 (permalink)
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Default Re: Still here thanks to RCH4

I understand, I really do, your defence of Laurie because I feel the same way about the R C group. Aside from supplying me with this drug, they have provided moral support and kindness. A little known fact is that they can organise home help volunteers from church groups globally. I understand your skepticism, I was very skeptical at the start but I took the risk and it’s paid off. Their website could be more professional I agree and the secrecy is easy for me to understand now. They themselves are taking a huge risk by supplying this drug to PALS which is probably not legal. I’m sorry if I upset you all by my attack on Laurie. This disease gives us a lot of time to think and I felt all this critism was unjust. Anyway, enough of my ranting, I just wanted to let you all know I’m doing ok on this drug x
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Old 12-07-2017, 02:19 PM #42 (permalink)
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Default Re: Still here thanks to RCH4

Hi all,
Just wanted to add that I take RCH4. It has no side effects, its free and my progression has slowed by 63% since starting. If anyone was presented with this option, I think it would be difficult to turn it down.
Worth a try I'd say, but I'm on it so I would say that.
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Old 12-07-2017, 03:49 PM #43 (permalink)
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Default Re: Still here thanks to RCH4

In re "locking threads" --

I thought a more recent thread was under discussion, and frequently, members are unaware that threads are locked by the server after a time so I mentioned that fact. Nor do I typically revisit past threads, as dealing with the present takes a fair amount of time.

However, given the attacks in this thread, I will only reaffirm my commitment as a scientist, moderator and former CALS that members here will always be able to tell the difference between fact and opinion in what I write. And if anyone isn't sure, please ask.

I don't keep a record of any threads I close and only a fuzzy memory of past discourse re RCH4. Because our members often have great difficulty in typing, clicking, scrolling, reading, etc. the moderators have the obligation to merge duplicate threads, move threads that are in the wrong place, remove spam, close discussions that are unproductive, threatening, abusive, etc. That is our commitment to keep these forums as helpful as possible for our members.

So anyone who doesn't find this site helpful can simply try another; we do not hold a monopoly on P/CALS support.

For everyone's information, the ALS Association has no affiliation, sponsorship or other association with these forums.

Best,
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Old 12-07-2017, 07:26 PM #44 (permalink)
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Default Re: Still here thanks to RCH4

mod Note:

Michigan, please provide proof of what you've accused Laurie of, to me via PM or VM.
Otherwise, shut up about it, or I'll be pleased to ban you.

Additionally, if I see another comment regarding either
1) Laurie locking a thread or
2) Disparaging Dr. Bedlack and/orEric and/or referring to Erich's SCAM blog or
3) Attacking anyone for asking a reasonable question,
I will:
- upon first offense, delete the offending part of the post or the entire post, and
- upon second offense, ban you.

In other words, stick to facts, not accusations, or go away and stay away.
I'm sick to death of the drama each and every RCH4 thread brings.

And before anyone b****es about censorship, it is. This ain't a democracy, it's a Forum.
And if you don't like it, don't let the door hit your ass on the way out.

Take your drama to TDI.

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Old 12-08-2017, 03:43 AM #45 (permalink)
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Default Re: Still here thanks to RCH4

I can attest to the following ;

I have been using rch4 for approximately two years.

I have at no time been asked for compensation by the RC Charity Group or anyone associated with them or the rch4 drug.

I have been offered by the group to provide testing or other associated devices should I not be able to afford them.

I have not ever experienced any side effects.

I have gained approximately 30 pounds since I have been taking it.

It has slowed my progression though not halted it.

I initially had improvements in speech and swallowing and some restoration of movement in various digits as well as improved walking.

These improvements have not stayed but the rate of progression has been slowed compared to my previous rate.

My interactions with the group have been professional and very cordial and warm.

To summarize it I have been treated very well by the RC Charity Group. I would recommend that anyone who wants to contact them.
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