RCH4 Drug stopped by Dr. Bedlack

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Stepping back a touch, I can see that this is a grey area in that there is not a lot of medical detail and people took a huge leap of faith in taking this stuff. It's not a risk I would want to take given the lack of imformation available. The whole secrecy thing makes me quite suspicious. But and it's a big but! Is there any evidence to show that taking this has caused harm or distress to anyone?

I can understand being sceptical when no medical evidence has been provided, I can understand frustration if it is felt that this is a viable treatment as we would want it available to as many people as possible as soon as possible. What I can't understand is the anger and vitriol if this has caused no harm to anyone, has it?

Wendy x
 
I can only talk for my wife and she had no side effects at all.
She was started on a small dose to check and then ramped up slowly to full dose.
 
In re how new prescription drugs or other therapies are "trialed," just a reminder that every dose of a drug whether injected into cell cultures, animals or humans, and the results of that dose, is supposed to be documented and conducted under a protocol (a written plan of what will be done and why), for a few reasons, including:

1) For potential publication, to advance science, as when a new mechanism of action (the reason a therapy works) is developed, or a new way of predicting the progress of disease, or which patients will benefit from a therapy is discovered. Publishing these findings helps science progress faster. Patents and other intellectual property protection can be filed before commercialization, to protect inventors' rights.

2) To be commercialized, i.e. available for prescription, it has to be approved by a regulatory agency (e.g. the FDA in the US). The agency will want to see all the records to make sure data aren't being cherry-picked, to establish the safety and efficacy that leads to approval.

3) For the basic moral reason that if something goes wrong or right, you need a record of what you did, to fix it if you can, improve it, or have reason to abandon it. And you don't want to cause more suffering than you end.

That is why human trials are generally overseen by a committee of independent experts without a commercial interest, who recommend whether a trial should begin, continue and end based on results to date. It is not uncommon that a trial is stopped because the therapy isn't working, or is working so well that further trial is immoral.

Also, if there is merit, someone else will ultimately extend your work. Those future people need records, which have been critical to finally getting therapies right, over millennia.

This imperfect-but-the-best-we've got tradition encompasses three important ideas: scientific advancement, commercialization so more can benefit and the ethics of experimentation.

For the reasons above, therapies are first tested "pre-clinically" with cells or other tests not in a living being. Then depending on what they are, there may be animal testing. Later, healthy volunteers are dosed (Phase I) to make sure it is safe.

Only then are patients with the study disease dosed, first in small numbers (Phase IIa/b) and possibly different doses to see what works best, and later in larger groups at selected doses (Phase III) to gain approval.

Then real-world results are monitored even after launch (Phase IV) to see how safety proves out in less carefully-selected groups, what patients benefit most, etc. and these results are published as well.

So there is not typically a top-secret, undocumented "pre-trial" phase. Early results are not published until they are seen to be legitimate (no one wants to publish something dangerous prematurely) and any property rights protected, but there are still documents and protocols behind early reputable work.

In ALS, a rare disease, the FDA has programs to speed approval that are still pretty slow. But considering how little time PALS have and that some therapies that looked good ultimately were shown to speed up progression, there is a tradeoff.

Best,
Laurie
 
When you are deliberately misstating the truth or saying something false, you are lying. So stop lying to try to bolster your point. I am tired of having to repeat my very simple proposition. And I am indeed extremely angry that you blind fanatics have taken this to the point of threatening a highly respected doctor's career.

I do not "work for" ALSUntangled. I volunteer my time and perspective as a patient and a little scientific insight from that perspective. And on my personal blog I am not representing anyone but myself. I do not know how to make that any more plain. However, you seem intent on illogical conflation so you can lay blame rather than admit gullibility. Richard Bedlack is not my employer and has no control over my actions other than to make a request of a colleague.

My description of my status at TDI was purely for clarity, so stop trying to demean me that way, Laurie. I have spent considerable time and effort learning the biology and science of ALS and am able to speak competently on the subject in academic circles. So yes, my knowledge is far superior to almost all other PALS. I make no bones about it but when constantly challenged by those with little to no comprehension I will defend myself.

I made an initial assessment based on all available facts. I suggest you consult a dictionary for the meaning of the word since you obviously do not know the proper definition. I am getting tired of having to repeat myself. And I am frankly very angry over the baseless attacks on Bedlack which have forced him to involve lawyers.

You may believe it works for you. I have no doubt you firmly believe that and was never arguing that point. However, placebo effect is a very real and strong factor, especially in ALS. I did everything in my personal investigation except contact the owner. What I found in my investigation was significant enough. The protein/antibody (it's identified as both on the website) against which the substance is supposed to work DOES NOT EXIST. There is no mention of it or RCH4 in any published scientific literature. The identities of the "scientific team" supposedly behind the development of the substance are nowhere to be found. The few scientific papers mentioned on the website are badly misinterpreted. The theory of ALS development given on the website is poorly conceived. The only identity of anyone involved in the development of the substance is a single individual with no pharmaceutical, medical, or scientific experience. So yes, naming him explicitly (not "mumbled") is extremely relevant.

Based on all these FACTS, and without any information which would clarify or refute, I made my assessment. I then was asked if I would take the time to do so for ALSUntangled since I already had done some work on the subject. The owner and patients using the product were given multiple opportunities to supply factual information which would counter my initial assessment. Instead of information, I was given hostility, accusations, and stories which were insisted be taken on nothing but faith. All of this active and fervent obfuscation only reinforce my suspicion that something is being deliberately hidden.

Therefore, because of the active and ongoing deceipt (especially the nonsense claim of losing "charitable funding"), I called it a scam in order to warn PALS away from this dangerous and dubious-at-best project. People are free to do as they choose and I really would have never given this another thought except for the constant attack campaign waged by the disciples.

Bottom line: I made a multi-disciplinary educated judgment based on all available facts. When challenged, I asked for facts which would change the judgment. Instead, it was demanded that I take everything on nothing but faith. That's not how it works, folks. And I don't care what any of you claim to have provided anyone else. Until that other person either shares that information or is in a position to competently evaluate and share that evaluation, my factual assessment remains. Period. End of story.

Put up or shut up.

I don't like all this vitriol from Eric Valor. Calling PALS liars is not correct behavior for someone who purports to represent the interests of PALS. I am a mother and grandmother who has ALS. I am taking RCH4 and, this I know to be true, is that it has worked for me. I am not a liar. If Richard Bedlack asked you Eric to take the word scam out of your blog then you should have done it. Even if it is your own personal view, you are still working for ALSUntangled and you are their representative. You are not coming across in a very good light. Just calm down and try to see this from our perspective. You seem to be very angry to be challenged and all this hatred for someone who is a very kind and noble gentleman is totally uncalled for.
 
Yes you're quite right Wendy. I cannot understand why certain people are being so vitriolic about this. I am in touch with eight people who are on this drug and all of us have benefitted from it. Personally, I have been on it for six months. Eric suggests placebo effect but some people have been on it for years and stabilized. Placebo effect doesn't last that long. I have not heard of anyone who has had bad side effects. None of us have ever been asked for money. What they do ask of us is to complete a detailed progress report each month with a blood test, blood pressure etc. I am disappointed with Eric for refusing dr Bedlack's request to withdraw the scam posts from his blog.
 
Jenny
Is there any way that copies of that progress info that you and the other have recorded be passed to Dr Bedlack to help clarify things or are you not allowed to do that under your agreement with the supplier? Maybe it would be a start to improving communications and taking the heat out of things.

As I said I wouldn't be brave enough to do this and I tend to be very sceptical when there is so much secrecy and lack of openness, but it would be such a shame for those taking it who feel it has helped to lose it. But more than that an absolute tradgedy if it does help, that it not be brought out into the open and help more people with this evil disease.

Wendy x
 
Hi Wendy, Richard Bedlack, has been provided with a dossier of confidential files covering years of pre clinical and clinical records.
 
Records which he cannot use for a public review so they might as well not exist. Provide me with some proof of your claims or my assessment, based on all the publicly-available facts, stands. Why is that such a difficult concept to grasp?
 
I've sent through my ALSFRS charts and specific history through to Dr Bedlack, does not worry me what he does with that info. The only thing I keep confidential is communication between myself and supplier, details of the drug and dosages etc which should not affect the verification of effectiveness.
 
Such a shame that the detail data cannot be used, I can understand Dr Bedlacks problems with discussing this now if he is only allowed to use the results and not the set up data. As an engineer I would not present information on something if I had to leave out calibration or safety critical data.

Considering that there seems to be a lot of PALs that feel this has helped them and that no one who has taken it seems to have come forward with problems or negative side effects, I sincerely hope that this can be resolved and communications improves.
Wendy x
 
This thread is really starting to irritate me. So there is someone out there with a potential treatment or cure, but they choose to surround it with the secrecy? If this is the case, that is very sad. How about open up and let the rest of us in on your data. Until then there is no benefit in discussing further.

I tend to believe eric and dr B who have a public history of studying Als and assisting patients.
 
This thread, due to a lack of new thoughts and continued verbal provocation, will be closed in 24h. Please bring forward any new concepts during that time that would be helpful for P/CALS seeking new therapies, and we will then move on. Anyone with additional information that would be helpful to ALSU in evaluating RCH4 is encouraged to send it to Dr. Bedlack.

Best,
Laurie
 
I honestly don't see why it gets a time limit when some of our PALS only get to log in a few times a week. People can read or not, and all have valid views whether it is felt it brings forward new concepts or not.

I feel it has the same standing as any other thread and should auto close once it is no longer active. Anyway that's MHO.
 
I'm kind of tired of seeing this thread show up over and over in the new posts area. I know that I don't have to peek, but, well, we all know that story....

It's not going anywhere. It's more of the same, and every time D r B's name is slammed here I get even more irritated. Eric has explained why private information that can't be shared also can't be used to vindicate these folks, so even if it did have good solid evidence, it's restricted and can't be used to back up a public claim.

It's a shame. I hope it's not a sham. I also hope it goes away. If anything new comes up a new thread can be opened.
 
Wow...this thread clearly shows the anger we all share towards a tragic disease. I know my opinion doesn't count for much when it comes to the experts here but it is a forum. So here goes!

I like so many others, click on every update on this thread. Why? Because my husband, someone I love very much, someone who loses so much every day and is someone, who needs anything that will slow his progression. I hope to find info that proves that this drug or treatment works. I also hope and pray that everyone suffering with this disease can have the right to try it if willing.

I was privately messaged a week ago by someone stating that they gave me the info to get my husband involved in this treatment. They stated that I did nothing with the info. Totally incorrect. I did contact a couple of times and I heard nothing nor were my calls or emails returned. That's the truth.

What I find so disturbing with this entire thread is the anger, threats and bashing by Eric and those supposedly being helped by this treatment. Don't you all get it? We should be united against this f@^#@d up disease. If this is a compassionate drug that is being handed out to some and is working than why not share the info?

Why wouldn't everyone involved work together instead of slinging and spewing anger? This forum is here to support each other not to be so righteous or self centered, that you feel the need to sling mud on a support forum for all PALS and CALS to see. I know I am on this thread hoping that one of the PALS who is receiving this treatment and or the parties who were picking and choosing them, would show some proof. I would be elated if you were able to prove Eric wrong. I also believe that Dr. Bedlack would also scream from the rooftops if there was a treatment that could help.

I am very saddened and disappointed by this thread. The reason I come here so often is that I truly believe that all differences and ego are set aside when it comes to supporting and helping each other through this disease. A thread should not have to be closed because of threats or ugliness. I know that any privacy agreement or threats to shut off treatment, if agreements were broken... would stop me from sharing something that might help. If you really are a PAL who is being helped by this treatment and keeping silent this you should be very ashamed.

As I stated in the beginning of this long rant... Its just my opinion and I am clearly not an expert on this disease. What I am is a person who would give anything I had if it meant a longer life for any PALS.
 
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