RCH4 Drug stopped by Dr. Bedlack

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I am a medical doctor who is taking RCH4.
For myself, the decision to start on it was not a complete jump in the dark as I had a patient with MND who stabilised. That is how I found the RCH4 charity.

For anyone interested, since starting on it somewhat less than 3 years ago my decline stopped. Fortunately I am (thus far) stabilised. To be exact, I actually improved 5 FRS points over a 9 month period but then slipped back 3 points. For past 6 months I am better than when I started by two points. In other words, overall, I have not only stabilised, but improved while on this medication.
I see postings asking how can one take something unknown from unknown people. A reasonable comment. I would say that I was aware of the inevitable outcome if I did nothing.
The RCH4 people proved to be highly knowledgeable in their area of ALS research expertise and are unwaveringly supportive.
The cost to me? Nothing at all.
Scam?

I cannot understand the hostile mentality of forum subscribers or the negative comments by moderators who should be neutral. If moderators wish to express their own opinion, they should not moderate.
Forum subscribers and other malicious people like Mr. Eric Valor have caused me to lose the source of my RCH4. People started running around calling out "SCAM" and propagating lies - without one shred of evidence and without even bothering to investigate.
Earlier this year I posted on another thread here about RCH4 on this subject but that thread is now closed.

Just one example (above) from this active thread follows below.

Posts by `Affected`
The people making this RCH4 DO ASK FOR MONEY and obviously in a very big way.
Where do they ask for money? I have looked this up.
Now tell me where they ask for money and precisely where is it obvious.

You also stated
I will say that a group of people that are getting a lot of money invested in their cause
Why do you and others propagate complete untruths?
Now tell everyone exactly where you found the word `Investment`
Publish the evidence or apologise.

You also stated
THEY ARE NOT FUNDING THE COST THEMSELVES
I am getting more angry by the minute. I suspect I am not the only one.
Instead of hitting out at a compassionate group of people who have paid their own money to treat me free for all this time, why not ask Dr. Bedlack to answer why he knowingly stood by and watched the only effective drug being destroyed by his silence.

Someone said that this is going to be the biggest scandal in ALS research history. Correct.

Someone else said Dr. Bedlack is a disgrace. They are absolutely right.
I now know that he has been given proof that RCH4 is no scam and has confirmed in writing to at least one person that he has been given the proofs, but has refused to publish the fact that he knows.

Apparently he was not asked to support the drug, only to state that he has proof that the RCH4 people were not a scam. That is reasonable.
As a medical practitioner he has a duty to be honourable. He certainly is not.

To the kind Dr. Bedlack who has helped thousands (quoting somebody) who vigorously promotes himself and has a big following, some questions must be asked.

Question - Does he pay his own private money to treat his patients?
Question - Has he ever produced a drug of any sort in his 16 years of practice?
Question - What percentage of his patients has he stabilised for months or years?
Question - Why has he said nothing while a charity successfully treating PALS collapsed?

I am now conferring with my lawyers as to what can be done about Bedlack & Valor. As I see it, my life is at stake due to their (criminal?) conduct.

As a doctor, I am now going to make a formal complaint to Dr. Bedlack`s licencing board. If he gets struck off he well deserves it. Dr. JNB
 
Hi, With regard to the 'death threats' this was a PALS who was receiving the drug. He was suffering mental anguish and sadly ended his life. He was a subscriber to this forum. Please for the sake of his family, do not pursue this. He was not in his right mind while making these unfortunate posts.
 
This entire thread is chock full of lies.

First, I was asked by another PALS to look into RCH4. I did so on my own time and the number of furiously waving red flags led me to issue my personal warning. I didn't find thin supporting evidence, I found ZERO supporting evidence. There is no mention of RCH4 or the offending protein/antibody named in the website anywhere on PubMed. The "scientific team" of the developers is very closely guarded (if indeed they even exist). The website owner has no scientific training or credentials. I have a record as a published scientific author. I wasn't asked to join the ALSUntangled review board for my good looks...

I published my warning on my own personal blog based on all the available objective facts (which are still the only available objective facts). It was AFTER I published that I discussed the matter with Dr. Bedlack whereupon he advised me to take the lead in the investigation. Hoping to have my initial personal assessment proved wrong, I accepted. I then sent a message to the website contact asking the standard questions ALSUntangled asks of all alternative treatment proponents plus two I felt were relevant to the particular case. I also asked for patients to contact for more information - again a standard procedure. I was met with extreme paranoia and hostility. I explained the difference between my personal blog and ALSUntangled official business and that I would be happy to be proved wrong.

I was simultaneously posting on forums looking for patient experience stories. It was then I found out the RCH4 owner had forbidden patients from talking to ALSUntangled. Dr. Bedlack has indeed received some information but was forbidden from sharing any of it, making it useless for any review. When someone makes a claim of efficacy as an ALS treatment, that person has an obligation to PROVE that claim. So far, the RCH4 people have not only failed to provide any evidence whatsoever - just pathetic excuses and active obfuscation.

You see, science is about OBJECTIVE FACTS which can be proven. The other thing is called faith, and it belongs in a church not scientific discussion.

So Dr. Bedlack had nothing to do with my blog post. It's my personal opinion based on all the objective facts available. I gave the RCH4 owner multiple opportunities to provide me with objective evidence which would prove me wrong but he refuses, insisting I just take his word for it. After I resigned my volunteer investigation for ALSUntangled I went on to other projects (I currently have a very exciting preclinical drug treatment experiment going which I hope to have published in late 2017). So accusations of "witch hunt" are patheticly ridiculous - I simply don't care and have much more important things to do with my time.

ALSUntangled is coming out soon with a review paper which will be very short because almost all of the information provided to Dr. Bedlack was placed in embargo. So the lack of information is the fault of the RCH4 owner and his disciples. You have only yourselves to blame. If this truly is the miracle treatment we have all been waiting for, you have a moral obligation to share it.

Otherwise all we have are unsupported stories and lies. And that is a scam. Monetary exchange is irrelevant. And that's my opinion based on available facts.

Anybody feeling brave I welcome your lawsuit. Be prepared for my immediate counter-suit for frivolous litigation and my bill for recovering costs of suit. I will win.

And Rick asked me to drop the word "scam" which I refused because I want PALS alerted to the possible danger here. This could be a miracle cure, but way the owner, Michael Richards (or is it Michael Curram, as used to register his previous domain for this stuff?) is going about this is amateurish and dangerous. And yes I know drug development - I am on my third preclinical phase trial and have conducted 5 patient-led trials (one of which was written as a book available on Amazon by the chief science editor of The Scientist magazine).
 
I ask that responses be civil. There are passionate feelings here that are very understandable. I do NOT want to lock the thread or have to delete content. People here have so far mostly stated their beliefs and experiences and what they have been told. Please do not let this degenerate into a flame war. I am not sure how much more can constructively be said as it seems both sides have stated their positions
Personal attacks and abusive language are not ok here. No one has yet crossed that line here. Please don't
 
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Thank you, Eric.

Folks, if dr b is embargoed from sharing his knowledge of the information he was given, then he can't comment. Period. He is a wonderful man and has apparently been put in an impossible position in regards to commenting. He cannot operate in silence as this anonymous group does. He also cannot defend himself and must just stay quiet. I'm sorry, but given information that I must not share and being asked, from it, to support something I'd never commented on, I'd stay quiet also. Engaging with such secretive and angry people could not be good.

We still don't know why the secrecy, and that worries some of us. The claim that offers were ignored so why should the info be shared now don't wash...that is selfish and does not indicate that PALS are the reason for this charitable action. If it works and could be produced in bulk people the world over would be saved. Withholding info on a cure because of hurt feelings is not the action of generous people.

I'm sorry to see so much anger being spewed on this forum.

Members who feel they've been helped, I'm sorry for you. I would do almost anything to save my husband. what I would not do is smear a good man who has not been involved in this exchange. By doing so, you are now trying to damage our journey with this disease.

Now I've probably made a mistake with this post. I should probably just stay quiet and hope this ugliness goes away.

What to do....what to do...
 
Confer with your lawyers all you want. I will laugh at your demand letter. If you choose to file, be prepared to not only lose but pay my costs of defense plus deal with a counter-suit for frivolous and malicious prosecution. I have seen the results of that and it's not pleasant. My opinion on my personal blog was written based on facts, the lack thereof, and my decades of professional experience. I am also a killer in deposition so be sure to tell your lawyers that. 2 points on the ALSFRSR are about half the margin of error so your self-reporting is worthless. The RCH4 owner has had multiple opportunities to provide some proof which he has declined. He is also running an illegal pharmaceutical manufacturing and distribution business (lack of payment notwithstanding) which puts him up as an international drug smuggler, facing decades of hard time. His big mouth is already attracting attention he most definitely does not want, so go ahead big boy.

I am already 3 steps ahead of you. "Medical doctor"... Please. You are about to sit down at a real big boy poker table here and you don't even know what the game is.

I am tired of this bullsh!t and have about lost my patience for whining and pouting.
 
RCH4 claimed to have lost "charitable" contributions some time in late April, weeks after my first post. They said all operating funds would be exhausted in 3 months. Say the loss was effective May 01. That would put them out mid-August. In September the same claim was being made, with the same 3 month deadline. The math adds up to yet another lie.

Insofar as RCH4 being a "charity", show me the papers. I run a legitimate charity fully registered with the IRS. I know what it takes to make and run one. I am not an expert on Crown law but I expect their rules are not wholly dissimilar. So, another lie for Team RCH4.

Their whole story is unraveling. Public litigation is also a matter of public record, meaning the formula and development history of RCH4 would become public record regardless of outcome so even if they win, they lose.

This is a very bad situation which is only going to get worse for Michael Richards/Curram.
 
DRJNB I was responding directly to what was said here by the original poster MICH5 in the opening post.

" due to the way the alsu review was conducted, the voluntary funding sources for rch4 immediately stopped. the funding was not stopped due to 'lil ole eric' but because the lead investigator of alsuntangled, a respected organization in the als community, called rch4 a scam."

You don't need to become so antagonist towards me, I'm in Australia and have nothing to do with this, but I do have a right to respond. Voluntary funding sources stopped.

kenschatz then wrote " they lost funding because Eric went above and beyond just posting."

Why don't you read very carefully what the people supporting your view are saying and make sure they are reporting things correctly, I'm only quoting them.

I am truly sorry your source of treatment has dried up. I just can't get my head around believing people have been taking this for years and remained stable, while hundreds of thousands have died not even knowing this was being given 'free' to a handful. These hundreds of thousands, including my own soul mate, have died during that time and will continue to die if you do keep receiving it.

They may be a compassionate group, but how compassionate is it to knowingly hold the key and just open the door a crack and let a few through and tell them to keep very quiet so the others drowning don't know they are safe.

I will say I think it is cowardly to blame Dr Bedlack for this. I have a right to my opinion to say that. Oh yes you were all cosy in the little safe room until the cat came out of the bag, now you are screaming that you are going to be back out with the other hundreds of thousands. I would rather see this compound investigated and available to all PALS, even if they pay money for it.

I do not give any opinion on whether the drug works or not, I have no way to know anything about that.

Nikki even if you are uncomfortable with some things on this thread, please don't close it and halt discussion. I don't want it to go on and on forever, but I think people wondering should be able to read as much as gets written here. Again just MHO :)
 
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Mod note: As long as things remain civil we're cool.

But to that end: Please no more threats INCLUDING threats of lawsuits. That ain't civil!
 
I'm unsure how we have got to where we are.

The story as far, as I see it.

1 . A group of private individuals (RC Charity) have discovered something that may help with ALS
2. They develop using their own funds over a period of a couple of years
3. A small group are invited to trial to get results
4. The molecule modified several times
5. Some good results are shown

This is where we are now

then

6. Using these results the RC Charity would try and interest a pharma to come in with funding to do official trial.

Obviously up to point 5 I don't think the RC Charity would come out and say they have found anything that was going to change the world as they are still collecting results themselves.
I don't think they wanted the attraction of the ALS community as it was still early days but because it was starting to get out there that results with patients were good, I think thats why Eric was asked to investigate.
I can understand that not every bit of information would be available that Eric wanted and why should RC Charity have to give it to him in the early days.

Now here is what I don't understand:

1. Moving from point 5 to point 6 is a large step and if a drug has given positive results, should be helped to get to official trial as soon as possible. If it does not work or is a scam, it'll soon fall on its ass. When GM604 was going to be the miracle cure, everyone was demanding it be rushed through on minimal results. RCH4 has been treated the exact opposite.

2. Why would Eric slate it if he has not got all the info he requires. They are a private entity. They can operate how they like. So far, they have developed something, trialled it on a small group who have all had good results and not been charged. If I was reviewing it would read, 'Possible new drug to hep ALS' but a lot more information required to back up the claims. Not Teddy's out the pram, they are not giving me what I want, I'll call it a 'scam' then

3. Why Rick Bedlack has not come out and publically said it is not a scam. I have an email from him stating he know's it is not a scam.

4. Why people think the RC Group should be coming out publicly with the drug and and try to treat everyone. The drug is very expensive to make and they cannot afford to treat the people they have now, never mind anyone new. I'm guessing if they can secure new funds, it means that the people who are on it now can then continue, produce results which can then be used to get a Pharma onboard to take to full trials

5. Why people are so negative on these forums. My wife is RCH4 and has stabilised for the last 9 months. She is one of medically identical triplets. Her one sister has already died and her other sister is in the last stage of her life. My wife was following the exact timeline until she started using RCH4. I'm pretty convinced it is working for her. Yes, I understand being skeptical about new treatments, but you still need to ask if this is the one that works. Results from users should be looking at, not the way the suppliers are making it/ distributing it/ communicating/ how their website looks/ who is behind it. I have supplied my results and details to Eric and Rick, and I believe others have to, but neither seem interested in results.

6. Why peoples Egos here are more important than people lives. I've just noticed on another forum, Eric has put a final comment and then has got a moderator to close subject so that no-one can comment. 'Get the last word in'. If this is happening, something is very wrong.

Anyway, I think the only way forward is Rick to come out and admit he has results and data required, and also knows it is not a scam (the same as what he has sent me in an email).

I'm hoping the RC Charity will secure a new sponsor so the ball can keep rolling and the drug go to full trial and help many more people. If you put 'RCH4' into google at the moment, the first site that comes up is Eric 'Scam' site, and while that is there and Rick has not come out with the truth publically, I can understand why RC Charities are struggling to get a new major sponsor.
 
Marlon, you are lying.

Bedlack said that he has some information that makes him believe that RCH4 isn't an attempt to deceive people for money. He is still far from convinced that it's an effective treatment. He is currently preparing a review paper despite his frustration that very little of the information he has can be used. THAT is how ALSUntangled makes a statement.

If credible information was provided to him earlier, this could have been over much sooner. But Michael Richards/Curram chose to withhold information. I would have gladly made a retraction of my personal blog post had I been provided with the information I apparently lacked. Again, the RCH4 owner and his disciples have nobody to blame but themselves.

RCH4 is NOT a charity. It's an individual, not a registered charitable organization. If you think I am wrong, show me the papers. Until that time, "charity" is a dubious claim at best.

RCH4 is NOT in a trial. It is an unidentified substance being given to patients. I have created and run several patient-driven research projects and know how to properly do so. This is just dangerous self-experimentation.

RCH4 makes a number of extraordinary claims and when asked to provide some credible objective information to support those claims responds with nothing but hostility. Anybody making a claim to have found an effective treatment for ALS then has the duty to support that claim with verifiable facts. RCH4 has thus far refused to do so.

I researched RCH4 and found absolutely nothing in any published scientific literature. I found nothing about the protein/antibody the substance is supposed to block (a major red flag). I found nothing about any researchers behind it. I found no published research by the registered website owner. I therefore posted the results of my initial investigation based on all of the objective facts available, using my decades of professional experience. RCH4 was given multiple opportunities to correct me which it continues to refuse to do.

GM6 was used as a method to push FDA to begin using their authority for granting Accelerated Approval for experimental ALS treatments. GM6 was never touted as "the miracle cure" but rather something that looked effective (as demonstrated by regulation of multiple protein levels in the blood and CSF) and had a good safety record through multiple official clinical trials. I know this because I was the one responsible for starting that entire movement.

What results should we be using to evaluate RCH4? Richards/Curram refuses to provide any. Why should he? Because he is making a claim of having found an effective treatment.

You have supplied NOTHING to me other than a few sentences of story. Stop lying.

I locked the topic on the TDI forum because it was nothing more than the same lies, baseless claims, and accusations against Bedlack that this thread is full of. I am a moderator there.

RCH4 has nobody to blame but itself. This could have been cleared up months ago had Richards/Curram provided the information requested to prove its claims. Nothing even remotely convincing has been provided to Bedlack or me. We are very interested in results - if only any should be released.

And if all it takes is one blog post by me to make a sponsor withdraw support for what is otherwise a successful treatment for ALS, there must not have been any confidence to begin with. Or the substance isn't as successful as claimed. Or (much more probable) the entire "charitable support" story is just another unsupported claim like all the others.

You want the truth to be published? Tell Richards/Curram to release the information requested.
 
Don't really appreciate being called a liar. All the info I've emailed you, Rick and posted on forums is my true belief. I have nothing to gain from lying.

I agree with the first statement, I said that Bedlam agrees it is not a scam, not that the drug works - read what I wrote. I have it in an e-mail from him. Not a lie.

What info do you have that says it is a scam? You might not have enough evidence to say this is the miracle cure but you have nothing to suggest a scam.

It is a charity to me. Someone is funding my drug and I'm not paying.

It is a Pre-Trial agreed. I would imagine most drugs go through a pre trial before spending many millions to go through a full trial.

If you researched the drug but don't understand how it works, how is it a scam?
Just means you don't have the info to work out how it works or you can't work it out.

I have sent proof of my identity to Rick Bedlam and my ALSFRS charts and I informed you of that. I have also sent you details of my wifes history. I have not held any info about my case from you apart from specifics, like dosages etc.

I appreciate that you are the 'People Hero' sniffing out scams, but you also have to be careful. One day, something will come along that is effective and this is when your professionalism will show, because you need to be able to recognise that and not just call scam. Any delay in this drug coming to the market for whatever reason if it is effective, is peoples lives.

I think you have called scam a little too early on this one and that is why so many people are aggravated.

It would be more beneficial to talk to users and get info on RCH4 rather than focusing your time on angry comments on all the forums.
 
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.
 
Please don't call people liars, threaten to sue people, etc. Discuss any legal actions/countersuits on your own time, please. People here don't have a lot to spare. Remember them?

We can question statements without questioning people. And whatever you have done/are doing on the TDI forum, Eric, is immaterial here. For the record, you are also overstating your biomedical education/experience, and I bring that up only because there are people here that you are trying to shock and awe, that shouldn't trust in your conclusions on the basis of the appeal to authority that you are trying to make.

Eric -- if you have evidence that this group is systemically dishonest in some way, don't mumble about names used on domain registrations, lay it out. Similarly, if PALS who have interacted with the group have objective evidence of benign intent/a serious R&D platform, it would be nice to know. Again, I don't know if they are honest or not. I have expressed my reservations. But I and others are still interested in more facts.

Whatever data Dr. Bedlack has that he allegedly cannot use, there are many ways to leverage insights within the context of NDAs or whatever the issue is, so hopefully he is thinking creatively. Moreover, if he has scant facts, he might want to reconsider a review at all and consider what his most productive role in all this could be.

I hoped this thread might spawn some constructive action and wanted to give dosed patients a voice, but what P/CALS see here is squabbling over everything but the primary issues of safety and efficacy. There are more bread crumbs to conclusions than anyone has dropped here. But if we don't see some soon, this thread will close, as more facts would be the only way forward to anything resembling "research news" as we bill this subforum. Alternatively, the thread could continue under "Rants."

Best,
Laurie
 
Laurie,
Well said
Marlon
 
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