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I'm glad to hear your wife is doing so well. I do have a question and that is why did it take you so long to post on this forum?

How did you hear about RCH4? Just curious since you're in Detroit. I used to "Summer" in Ann Arbor and have a connection at University of Michigan.

It seems like a lot of doctors refuse to "sign off" on RCH4 and others no nothing about it or don't acknowledge that they do.

The reason for so many questions is that if there is a doctor in Michigan who is willing to sign off on it, I'd like to know.
 
I have a serious question for all the RCHer's here. I notice that many of the posters here cite very specific facts about progression, and use charts as well. How is it that so many posters can quickly pull out data-rich displays and point at exact numbers, just like their fellow posters? Is there some common software or website that has these things?
 
excel spreadsheet supplied by the charity, if'n I recall
 
Please tell me where I can find this drug!!! I would love to chat via phone
 
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Atsugi, we supply a lot of data once a month along with any test results and comments from all our doctors to the charity. The charity provides the graphs but we can also back that data up with a spreadsheet formatted for us that we enter different parameters into on a regular basis. If you go to the charities website there are some examples, but not a complete spreadsheet.

RCH4 Charity oage:
http://www.als-new-drug.com
 
KimT, First, let me say I am sorry for your diagnosis. With all due respect, I don't understand why it matters how or when I have posted on this forum. I have posted on this thread prior, as well on other sites. I suppose the main reason is that I take care of my wife, who was diagnosed in 2012, 24/7, by myself, no other caregivers. I am sure you can understand that that is my time priority. Posting on internet forums is not. As far as the doctor, that is personal and private information between her and her doctor. I am sure you can respect that.
 
Thanks, Greg and Tim. Now that I think about that closely, I, too, would very diligently use spreadsheets and such, if my provider brought it up. Thanks.
 
ACSI, something does not have to be an intentional "scam" to hurt and kill people.

The assertion that the meager RCH4 data, all self-reported by those eager to believe/continue, constitute proof of safety is a delusion.

Are you aware that drugs used in hundreds of thousands of patients worldwide have later been removed from the market due to safety concerns and often directly-attributable deaths? These drugs all went through actual clinical trials, a publicly-disclosable development process and regulatory approval. (Yes, the linked list is a few drugs behind, but has a simple format).

RCH4ers, dose yourself/your PALS all you want. Any attempts to proselytize others to join you will be addressed, yes, factually. There is an RCH4 Web site for those who want to be persuaded or learn more. These are non-commercial forums.
 
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alscansuckit,

Your wife is lucky to have a CALS. I don't have one. I respect your privacy. I was simply curious why you only posted on this thread and did not share your wife's success before. No response necessary. I know all I need to know.
 
What is sad is that we are all in the same boat here, and are arguing about a drug that may be or maybe not the treatment that we are looking for.

The suppliers of RCH4 are looking for a sponsor to take through trials (as they don't have the money) and this would then shut down these discussions online.

What is frustrating is the ALS Association could pick this up and send it through trials with the massive amount of money they are just sitting on and not doing anything with. I thought the Ice Bucket challenge was run so that a cure is found but they just sit on the money, wasting it on Fat Cat wages and advertising to raise more money.

Now sure if any of you are following the 'Contagious for a Cure' from Annie ALS on Facebook (if you are not, look it up), but some of the facts about the money being wasted does my head in. They should pump a couple of Million into getting this drug trialed and then the argument would be put to bed.
 
Marlon,

I agree with you. I would love to see ALSA jump on board, although I believe it would take more than a couple of million. If it were only a couple of million, I don't think there would be a problem raising it.
 
Mad marlon have you had a yarn with Neale?
 
Marlon and all,

Please refrain from discussing the financial plight of RCH4 developers, as the same could be said of virtually any ALS program (none is flush, that I am aware). We do not allow fundraising in these forums. MGH is not posting here asking for money, so we need to enforce this rule equally for all.

Anyone wishing to fund ALS causes is encouraged to conduct due diligence and contribute insofar as your resources allow.

Best,
Laurie
 
Skepticism

Dear Igelb;

Skepticism is good. We should all be highly skeptical of arguments rationalizing withholding or banning anything "for our safety", and of allowing anyone to have the power to do so. This is especially true if an inappropriate standard of safety is being used.

Therefore, I'd like to address the skepticism that you and many others have regarding RCH4.

In the message above, you do allow RCH4 users a right to use it with some strong skepticism, but your arguments seem generally supportive for the banning of any drug which has ever been shown to be harmful.

I don't think that's right. You are framing the evaluation using the standards of healthy people who'd be put at risk by a drug. Of course one wouldn't seek chemotherapy for a headache..but for a cancer? Your position disregards the fact that ALS is by itself a death sentence, which places PALS in a different position than healthy people in the general population.

If many people honestly attest that some drug helps, why shouldn't a PALS take the risk of using it, and reasonably so? What might it possibly do, kill us? We will be dying anyway. Dying sooner & less horribly from a drug reaction vs. a real chance to live longer is a choice I'd happily make. If some hypothetical drug gave even an anecdotally-established 50% chance to halt ALS progression but it came with a 1% chance of death, doesn't that decisively beat a 100% chance of a very nasty, protracted death?

No one (and no agency), no matter how earnest their skepticism, should have the right to withhold anything from a PALS or other person with a fatal illness. That includes telling them about things like RCH4. If you want to help, then advise, support, and even cajole as you see fit. But do not withhold, especially by your silence or your contempt. Medicine has a duty to inform, which is being neglected.

If we then harm ourselves in full knowledge, that's on us.

If you have harmed us by withholding or by omission, that's on you.

If RCH4 is delayed or killed off by (presumably) well-intended skeptics, a great disservice will have been done to all PALS who might have benefited from it. RCH4 already has more than enough evidence to warrant a real evaluation but the skeptics are setting this back severely and may kill it entirely. If RCH4 is eventually shown to be effective, should the families of the PALS who died in the interim then sue the skeptics for wrongful death? Should the skeptics be indicted for negligent homicide? I go to extremes but that's what it amounts to.

My point here is that the collective skepticism may well be more deadly to PALS than RCH4 is.

If the stuff has any benefit, we all need to know ASAP. Instead of denigrating, even by inference, we should all be fighting to see that happen quickly.

Anecdotally, RCH4 users have been very supportive of that drug's benefit with few reports of side effects of any kind. Some users have stopped taking it, passing away after a long, slow decline. To my mind that's much better than a rapid decline with the same outcome. The charity who distributes RCH4 says up front that 15% of people don't respond to it at all; their ALS is caused by some other mechanism. But this is not surprising. All medications have a spectrum of effectiveness and harm. Few are universally safe and dosage always plays a role.

But I submit that medicine ought not to effectively disdain such a drug by using a "safety" standard more suited to people who aren't facing certain death. if something like RCH4 helps a small fraction of users, and even if it harms some, medicine's obligation is to inform potential users that such a drug exists and what the benefits/risks are.

Presently, RCH4 users are providing this information, generally on forums, and facing significant opposition in the telling. While it is unfortunate that the conversations do sometimes get a bit warm, the criticism, skepticism, thread closure and "scam" allegations they generally face are at best unwarranted and at worst may do great harm. If there's benefit to RCH4, PALS across the world need to know RIGHT NOW, and if we take it all risk is on us. That's what we all should be pushing for. Delay, however well-intended, may be responsible for premature death on a wide scale.

Respectfully,
Jim Savino
 
Re: Skepticism

There is no regulation of RCH4 and therefore there is not going to be a ban.

No one here, including me, has the power to "delay" RCH4 from reaching users. I have nothing to do with its distribution. It's worth noting, though, that a lot of your argument hinges on the notion of free access for all, which evidently is far from the case.

As for the skeptics being responsible for PALS' deaths, it's far more likely that P/CALS are pinning too much hope on the unknown and thereby passing by approaches that a lot of us know work well for a lot of people. That truth is why I continue to post about RCH4, in addition to the obvious safety issues that you skirt with the false dichotomy that anything is worth it in ALS (which, BTW, undercuts the "safe as houses" assertion).

As readers here know, my PALS benefited from many alternative approaches to ALS. As I stated in my "here is the public record" post, the difference is that we knew what we were trying and why. That's really not an overly high standard to hold therapies to, Jim.
 
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