RCH-4

[Dagmar]

ATTN: Tomasz Boski, John S, Karl Wigler, and all members of this forum…..

Amanda and I need to step in and remind you of our forum “rules of conduct.”

#1 Rule: Please Respect Others.
“The purpose of the forum is to provide a platform for the exchange of ideas. Occasionally, conflicts may arise when people voice opinions. Be courteous when disagreeing with others. Debating the opinion is appropriate, however, criticism against the originator of the opinion is not allowed.”

Examples and the consequences of disregarding this rule can be found here:
https://alsnewstoday.com/forums/about-our-forums/

Thank you,
Amanda & Dagmar
Forum Moderators

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[Deleted User]

This is the truth:

ALSUntangled 51: RCH4, Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, DOI: 10.1080/21678421.2019.1675282

Published review of RCH4 by a valid research entity.

“RCH4 is described as “an investigative new drug” (6) that “does not have Regulatory Authority marketing approval in any country” (6). A United Kingdom-based website states that it will
“probably slow the progression of your ALS” (6). In the words of patients who believe in RCH4,
this website “is not the easiest or most organized” (7). Information about the product is  interspersed between cartoons (8), stories of famous scientists whose breakthroughs were initially met with skepticism (8), controversial medical advice for PALS (“do not go to the gym” (6), “we do not recommend winter flu jabs” (6), attacks on respected clinicians, scientists and institutions in the ALS community (9–11), and cynicism about academia itself (12). Neither the molecular structure nor the chemical class of RCH4 is described. The RCH4 website authors identify themselves as “an informal charity group of retired scientists with lifetimes of experience in membrane osmosis and immunity research” (8). Our Pubmed search identified no published papers on RCH4, and we recall no scientific presentations about it at ALS meetings we have attended. The RCH4 website claims its submissions for publication and presentations have always been rejected (12). In fact, as recently as 2018, a “Michael Curan” had an abstract on RCH4 accepted for poster presentation at the Motor Neurone Disease Association’s International Symposium (13,14). No authors appeared to present this abstract (14).”

I had no part in producing this review/opinion, but I know it was published based on the fact that it carries a DOI that I can verify. DOIs are in wide use mainly to identify academic, professional, and government information, such as journal articles, research reports, data sets, and official publications. All kinds of excuses can be created about RCH4, but the facts do not change. Until they do what is required to ensure that their product is safe and effective no country will approve its use, no matter how well it works. At this point, RCH4 exists in the realm of pseudo-science because “a group of famous scientists” that have retired is not able to get funding, nor present the research on the drug for review. But they can and do ship the product across borders to their select recipients. Every other drug developer that was ever developed has found a way to meet the international standards, yet the “group of famous scientists” behind RCH4 just can not get around to do what they must know needs to be done to get the product to market.

We hear about grants pretty regularly that are given to help pay for research to cure ALS. If they can show the results that people here claim, why don’t we hear about it? Where are the studies proving that they are doing what they claim is being done? What DOI has been awarded for RCH4 research papers? I have an open mind, but I am not a fool!

[Dagmar]

Karl — I’ll concede that the folks at RCH4 are experts when it comes to their own product. But they shouldn’t delve into other areas such as lifestyle recommendation: specifically exercise.

1. My impression is that someone in RCH4 had a past bad experience in a “gym” as well as with a fitness trainer, which resulted in their blanket statement to avoid gyms and physical therapists!

• Don’t go to the gym? Ok, what about a workout at home? Is that OK? Is it the equipment? There’s lots of adapted equipment on the market. Or, exertion? Obviously, the person who wrote the statement never had ALS – – it’s impossible to over-exert; I may “want” to do 20 repetitions, but in reality, can only muster 1 or 2. Some days just putting my socks on is exerting! (ALS humor here! lol)
• Medically-trained physical therapists know the proper exercise parameters to give their patients who have ALS. Trust them.
• Hypermetabolic? That doesn’t mean avoid exercise (strenuous is not possible; see my comment above) rather, do your exercise and then maintain your weight by consuming more calories. Eat more! Not, move less.

2. I agree regarding the sense of humor. In fact, current research shows that having a good emotional well-being helps to slow ALS symptom progression: https://www.sciencedirect.com/science/article/pii/S240565021930022X#bb0090

[Karl Wigler]

john s if you are a pALS please ask the charity for help otherwise stop complaining and making remarks that have nothing to do with this thread which is about research. Anyway your post is wrong. They do not make any claims and journals are irrelevant to marketing.

I looked at their site https://www.als-new-drug.com/cost To bring it to market would cost millions – where is the money to come from? Tomas was right you know nothing about raising money. Drugs are the most risky investement of all. From google – “Biotech stocks are high-risk investments. Small- and mid-cap biotech stocks are the most high-risk, high-reward stocks.”

[Deleted User]

Hi Karl,
I am talking about research. See below, the same thing I first posted above. What exactly is wrong with this? If you think it is wrong, you are invited to show us all the studies that they submitted to competent and recognized journals. The studies are steps in compliance with current scientific standards, or what would be the normal way of developing drugs pretty much worldwide. You are welcome to prove me wrong. Complaining about costs and telling me to ask the same people who failed to comply with international norms will not do that.

“I spent a lot of time over several weeks looking for what’s up with RCH4. I think I can sum it up as the people behind it have not complied with current standards of both testing and submission. I looked at the literature they made available on their site (s) and it is very slim on actual studies. Studies must be submitted to a competent journal, and the journal will proceed to have specialists in the same field review the data prior to publication. The RCH4 submissions never went that far. They never presented complete testing data, development data, or completed submission documentation, to a journal of competent review.”