RCH4 Drug stopped by Dr. Bedlack

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mich5

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Moderator's note: This topic was explored some months ago in this thread.


dr bedlack designated eric valor as the lead investigator for the rch4 review on behalf of alsuntangled (alsu). a review for alsu should be conducted in the following manner, according to the alsu website (2 minutes into the 7 minute animation it states how reviews are conducted):

ALSUntangled.com - How To Participate137

the rch4 review was not even remotely conducted in this manner. the lead investigator posted a blog calling rch4 a scam and then contacted users of the drug. 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.

dr bedlack was given confidential files showing years of data by the rc group.

the definition of scam is a dishonest way to make money by deceiving people. the rc group never charged pals for rch4 and never made any claims to the pals who took it that rch4 would stop, reverse, or cure als.

dr bedlack needs to disassociate alsu from eric valor and make a statement that rch4 is not a scam.

below is a link that has additional information on this:

Bedlack
 
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Mich, first a moderator comment: this post belongs in Rants since it is entirely opinion rather than fact but in the interests of continuity from the original thread and Eric's responses in Research News, we'll leave it here.

Secondly, a regular-person comment -- Eric has admitted his conflict of interest as well as the fact that "lead investigator" was used grandiosely instead of "volunteer support," so I think we've done that part in the last thread. The more serious issue, I think, would be -- did ALSU's attempt to "investigate" RCH4 result in any facts worth grabbing on to? Sadly, no. And the bit about having to close up shop due to Eric's posts is just wonky.

First, if the funders believed, they believed. Blog posts (not to mention scholarly publications) critiquing development programs by implication are as easy to find as dust, so if every program that got zinged closed up, we'd have no therapies. Second, if a neuro freaked out and withdrew "consent" for his patient to be in the RCH4 "trial," most patients know how to use a phone book, metaphorically, write a check and find a neuro willing to sign a form. And honestly, it'd be a poor neuro who wouldn't find in 5 seconds w/ Google that Eric is a PALS and not a professional scientist.

I will say, calling on Dr. Bedlack to do anything at this point seems rather silly, but in particular, he can't disown Eric because Eric continues to work with ALSU, and likewise Dr. Bedlack can't "state" anything isn't a scam that he hasn't investigated from a scientific perspective, nor does that brand of analysis entail guesses as to motives and honesty, and the secrecy factor seems to have rather prevented a full scientific assessment since I haven't seen one.

But if the page you linked to is correct and "confidential" data were disclosed, would it not be in the dosed patients' interests to ask that they be released so as to call off the hunters, and the therapy program re-instituted? And if the named entity in the NDA is no longer operational, that may be an out-clause anyway.

So, Mich, if you want to benefit the cause and really think there is something to RCH4, persuading its sponsors to come back out of the closet and collaborate with the witch hunt (hard to maintain in the face of full transparency these days) seems like the most constructive course of action. Either way, we're not going to re-litigate what we did in April.

Best,
Laurie
 
There is some new info. I think most folks were not aware that Dr. Bedlack had been provided additional data nor that Eric had broken protocol, which was the thing that always put a burr under my saddle about it.
 
If ALSU has usable data, they should comment/report it, I agree, Brad, or explain why they choose not to at this time. The paucity of gold-standard evidence notwithstanding, I don't think ALSU members always understand how scientific information and other stimuli become decision support in the real world. And Eric overstepped, no doubt.

At present, RCH4 is listed as an "open review" on the ALSU Web site, and you can vote for it or other topics to be pushed up on the list.
 
I feel compelled to jump in here. First I pointed out to Dr. Bedlack some months ago that the untangled site was flawed, a person could vote an infinite amount of times in one sitting - helped him fix it. I have been taking RCH4 for 9 months, free. My ALSFRS score has virtually stabilized and can be verified by a Mayo Dr. whom I copied in a letter to Bedlack.No reply from Bedlack. The people that have supplied me chose not to participate in an untangled verification, for reasons that are not our business. it is their choice, they lost funding because Eric went above and beyond just posting.He went on a witch hunt, trying to find names and addresses of people who were involved, actually causing damage to the charitable funding of the project. This is not a scam, it's a shame - that a few people that cannot beleive that there are people that would invest their life savings to help us are immediately called con artists. Bedlack with the info he has knows it's not a scam and should say that at least.
 
Ken,
Glad to hear that you feel your progression was delayed. Do you have evidence to the effect that Eric actually contacted funders?

For the record, the RCH funders/management were extremely naïve if they thought they could stay (back?) under the radar forever while dosing PALS. I am not ascribing evil motives to them as I don't know them. But their Web page on the topic is of the unprofessional paranoid tone (Genervon, anyone?) that is unfortunately common in the rare disease world. And don't tell me you're only paranoid and light on facts if no one's out to get you. The site goes beyond that.
 
I agree with Ken. I cannot understand the moderator's stance on this. She is giving her own biased opinions. Fact RCH4 works. Fact RCH4 is not a scam. Fact Doctor Bedlack has proof, and knows for sure that RCH4 is not a scam but refuses to speak out.
 
What I do not get is why anyone who knows they have an effective treatment for ALS, would not come forward with it ? I know I would pay for any drug that would stop Steve's progression. Where is the proof that it works? Jenny, what supposed proof does Dr. Bedlack have? If there is a cure why isn't someone screaming from the rooftops. I know I would scream until everyone who needed it... knew.

Why not put it our there so all PALS can get it? You should not be able to just pick and choose. Jenny, are you taking the drug or just commenting with no proof of your own?

I do not understand why anyone would pick and choose who gets a drug that is supposed to halt this messed up disease. It is works and they come out of the closet I am sure there would be funding to get our PALS the meds. I also agree that the trial process and paperwork is really screwed up. I do think if a drug has promise that it should not be set on waiting approval.

I can tell you that Steve does not have time to wait on trials and is getting weaker everyday. We would try anything that shows promise.
I bet if any of their loved ones has this disease they would want the opportunity to make a choice. I am beyond frustrated with the lack of support for some of the drugs that are out there. The latest one is sitting waiting on signatures. It has been made very clear that this drug would need to be started before FVC decline. Well there goes s chance to help Steve and so many others.

We do not have the time to sit here and wait for every stupid step in the process.
 
the efficacy of this drug is irrelevant. the alsu lead investigator stated that rch4 was a scam. dr bedlack has clinical and pre clinical data, patients records, and has been asked to issue a statement stating it is not a scam. he remains silent.

laurie - you dont have to be happy that ken 'feels' that his progression was delayed, he has a neurologists confirmation that he has stabilized.
 
Mich5, I am very interested in your involvement with this drug. Are you using it? If there is clinical proof than why isn't it being shared?
I ask these questions not because I am out to prove its a scam. I ask because I am watching my husband lose his battle everyday.

If this group was picking and choosing who gets the drug than they should be very ashamed. If it works then you should have more to say than there is proof and Dr. Bedlack is sitting on it. When it comes down to it, I am sure everyone here would care less, if any doctor was supporting a drug that helps. We would all be behind it and finding any way we could take it. But we all know that waiting on the system means no help for our loved ones.
 
I was talking about this with an attorney friend of mine and he had the following observation,

Bedlack, Eric, et al, insist that the claim of "SCAM" cannot be refuted unless they can verify the effectiveness of RCH4. The issue of efficacy has NOTHING, I repeat, NOTHING to do with any of this and is not the issue at hand at all.

The issue at hand is that a libelous claim of "SCAM" was made without knowledge of the details of any agreements between the RCH4 group and their PALS friends. A scam implies that someone has paid (in monetary and/or non-monetary form) for something which was promised to do something, and it didn't. Of course, we know no money was ever asked for and no claims of efficacy were ever made. That is the issue and the direction I hope the post gets steered.

The original question asked of Eric in the original post still needs to be answered (paraphrasing): If I didn't pay for anything, how is this a scam? Edit: I have yet to see one word of criticism from users about the drug or the charity supplying it. If public funds were not involved, the RCH4 people do not have to reveal any scientific information or data. They financed it therefore the information is their private property.
 
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Wow, so many converging storylines. While efficacy isn't germane to the definition of "scam," Brad, (unless the RCH group plans to sue Eric), it seems pretty pertinent to people here so I think that's why we're discussing it, however much in a vacuum. Nor did anyone say that the group "has" to release data, just that it would seem a benefit to the community they purportedly support if they did.

Mich, plateaus in ALS are not uncommon. Not sure what "virtually stabilized FRS" means in terms of points and changes, but it's a notoriously imprecise scale so that's why Ken's perceptions would be valuable as well -- it's called "patient-reported outcomes." But unless Ken's neuro has a crystal ball, I don't think he can say that he has "stabilized" for all time.

Jenny, if my posts offend you, by all means, add me to your "hidden" list so you won't have to see them.

Happy Monday to all,
Laurie
 
I did not say for all time! I am grateful for the so far. I take no supplements, or drugs of any kind. I have found 10 people on my own that are on it with similar results,some better, coincidence? I think not.
Please don't put words in my mouth, or demean my Doctor.
 
That's wonderful that you are doing so well. If Steve received a drug that worked you can bet your a#@ we would be sharing the results and data to make sure everyone with this horrible disease could take it.

This group celebrates in silence. Why is my question? I am not a doctor, nurse or part of any study so forgive me for being stupid.

All I would like is a chance for my husband and other PALS to have hope. You defend the group that picks and chooses. To me that sounds fishy if not heartless.

Of course this opinion comes from someone uneducated to the truth. Their fault not mine.
 
Ken Jenny and Mich I am happy and encouraged by what you say. Even if something only slows things temporarily that is great. We all desperately need more time. I wish there was more openness on both sides as it is very hard for outsiders to know what to think. The path taken by the group seems so strange to me.

Ken were those 10 people ones you found because they, like you, are unhappy with recent events? I am asking because that group would be self selected to have a positive opinion of this. If it did not seem to work for someone they would not care and so will not be represented in the unhappy group.

Whatever this is the odds are if it works at all it works for a subset as we all know ALS is really a group of diseases. That does not mean it would be unworthy.

I am confused about what the group's current goals are. If they have given up why the posting about Dr B? If they have not is there a more constructive and open way this can be pursued?

You three were very brave to take an apparently unknown substance from unknown people.
 
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