Announcement

Collapse
No announcement yet.

Rch4

Collapse
This topic is closed.
X
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Guest's Avatar
    Guest replied
    For those interested, I found this discussion on ALS forums regarding RCH4, they seemed just as confused over it all over there as well. Some claim its a scam others say they are taking it and it is effective.

    I copied some of the text, but not the names of users, being its a public domain I'm 'assuming' it is all public info.

    There are a few people discussing this drug but if you want to see all of the thread its on ALS forums on the thread titled 'RCH4 Drug stopped by Dr. Bedlack'

    CC

    ************************


    RCH4 Drug stopped by Dr. Bedlack
    ________________________________________


    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.

    ********************

    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 gIf 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 tI 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. opics to be pushed up on the list. oing to re-litigate what we did in April
    ***********

    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.
    Last edited by ccinjersey; 12 March 2018, 23:56.

    Leave a comment:


  • njm
    replied
    Marlon:

    Great for your wife. This is a truly remarkable response over 3 years.
    As I have said elsewhere on the forum I am not a 'doubting Thomas'.

    Can I please ask you to reply to the following questions. And please do not be offended:
    1. Did your wife have a definitive diagnosis of ALS?
    2. When was she diagnosed?
    What were her symptoms at diagnosis?
    Where was she diagnosed?
    Who diagnosed her?
    Again please do not be offended by these questions. I am trying to make sense of this all.
    I do hope you reply.

    Best Regards

    Charles

    Leave a comment:


  • Terry
    replied
    Hi Mndmarion;

    Thanks for the update and I hope your wife stays the same or improves a bit. I hope that others report similar soon.

    Love Terry

    Leave a comment:


  • mndmarlon
    replied
    Hi,

    Just updating. My wife who is on RCH4 is still well and still shows no signs of progression (Since Feb 2016!)
    Chart below shows the time lines of my wife's identical triplet sisters and mother who have already died from this terrible disease.
    My wife has not regained any muscle groups that she lost originally but her mobility has increased and hence her ALSFR-S score has actually gone back up.

    To all those worried about safety, yes we were worried as well, but in the big picture, we had watched 3 close relatives die and wanted to try anything that was promising out there. We could not find anyone who reported adverse reaction to RCH4 when looking. When my wife started it, she started on a super low dose to check for adverse reactions and then the dosage was slowly raised.

    After several months, even the twitches and cramps completely stopped.

    I can say we have not paid a penny for the drug and have always been treated with professionalism and compassion by the 'RC Group' and so the 'scam' headlines are just ridiculous

    The way the drug has been discovered and how it has got to where it is is not conventional because it is not big players that have discovered it and they don't like that. That is why some of these players are making it hard for RCH4 to succeed. After knowing intimate knowledge about RCH4 and its supply and dealing directly with some of these 'experts' it really saddens me how a lot of them are just in the game to protect their incomes. The industry is certainly very corrupt!

    March 18.png

    Leave a comment:


  • Guest's Avatar
    Guest replied
    Ellie CC is giving the forum very good feedback. We all post stuff that not all people are not that interested in, but as Norman the soup eating fire dragon says, pick out the nuggets and discard the rest. I hate it when people attack each other on here, because like emails, you cannot quickly correct your response as in a face to face conversation. Dude xx

    Leave a comment:


  • Guest's Avatar
    Guest replied
    With all due respect Ellie I never made any 'claims' here to say I do know what its like to be living with this illness.

    What I said was: "OR maybe this drug is the real deal stopping and/or slowing down progression ? I think before I injected medication into my body as a form of therapy I would want to know what is in it, and is it safe ?"

    I also didn't tell people here not to try, I told Charles if he does just to be careful, that's a huge difference.

    I also don't appreciate you criticism of me Ellie. I have every right to state my opinion here as you do, and if I want to research this drug and share the knowledge I what I found I will do so. So don't tell me what I can or cannot do, and please don't tell me what kind of answers I will get, if I want to seek them out I will do so..if its a dead end so be, its my time wasted not yours.

    If you don't like what I have to say 'block me', that way I don't have to listen to your constant negativity towards me.

    CC

    Leave a comment:


  • Ellie
    replied
    CC, with respect... You cannot possibly even begin to imagine what it is like living with an MND.

    So, all things considered, if people on this forum want to try RCH4, then they can. They do their homework and make their decision.

    I think, until such a time if and when new info on RCH4 comes to light, there is no point in asking the same questions over and over - you, nor anyone, will get answers.

    (The FDA is a US body)

    Ellie x.

    Leave a comment:


  • Guest's Avatar
    Guest replied
    Hi All

    Who posted RCH4 on Facebook is it coming for the RC Charity Group ?

    The RC Charity Group seems the big mystery to me, who are they ?

    I thought new drugs had to go thru years of clinical trials for safety and effectiveness, and then get approval from the FDA, how did this Charity go around this protocol ? and have access to giving out this drug to people around the world ?

    How did big pharmaceutical companies block access to this drug if the above protocol has to be followed first ? Are they blocking clinical trials ??

    Why is information only being released by the Charity if a person is interested in becoming an investor ? Nick himself stated he does not know what's in the drug and has not seen the results of phase 1 clinical trial, how do we even know there was one ?

    Sorry this might sound even more skeptical, but how does anyone even know who Nick is?...maybe he is the messenger for the Charity 'selling' hope ?

    OR maybe this drug is the real deal stopping and/or slowing down progression ? I think before I injected medication into my body as a form of therapy I would want to know what is in it, and is it safe ?

    Hate to play devils advocate, but things do sound 'sketchy' to me, the 'red flags' stated in the article are just that, 'red flags'

    CCxox

    Leave a comment:


  • njm
    replied
    Ann:
    That is an excellent suggestion. An analysis of the compound would answer questions.
    That could be done fairly easily and inexpensively in a laboratory.
    Anyone have contacts?

    Charles

    Leave a comment:


  • Guest's Avatar
    Guest replied
    A Not figured it out yet, but I'm on it, like bonnet. Photos on RCH4.com are generic images off th'interweb. 1 is from Getty images and 1 is used by a cancer surgery in Georgia USA. I guess there is nothing wrong in making your website look professional, but it seems to be taken from an American saying 'Sell the sizzle, not the steak'. Dude x

    Leave a comment:


  • Annb
    replied
    DUDE

    What do you think the scam is? There appears to be no financial reward. No-one has been reported sick. It is a mystery.

    Ax

    Leave a comment:


  • Guest's Avatar
    Guest replied
    A After lots on this drug, I am convinced this a scam. My issue is with the jokers who are peddling false hope and not with the member who posted it on the forum. Dude x

    Leave a comment:


  • Annb
    replied
    cc - It would be possible to have a sample analysed to see what is in the drug. I asked my Consultant why this had not been done and he didn't answer.
    A x

    Leave a comment:


  • Annb
    replied
    RCH4 are now on Facebook.

    Whilst I can see your rational CC I just don't see what the scam can actually be. The Charity doesn't ask for money and there doesn't appear to be any complaints of sickness from taking this drug on the internet only positive comments. A letter from a Consultant in Nottingham to a GP confirms that the Consultant is aware that the patients is taking the drug and is stable.

    So what/who exactly is being scammed? Could they br peddling - Hope? I really wish I knew.

    I received an email from someone in the US after making an adverse comment about Rch4 on patientslikeme. They said that the Charity had approached backers and offered all their research to do drug trials but had been refused on the grounds of the cost of doing drug trials. They suggested that the Pharmaceutical Companies were blocking progress.

    I don't know what to believe.

    A x

    Leave a comment:


  • Guest's Avatar
    Guest replied
    I can't find anything on this charity called 'RC Charity Group', but did find this;

    ***************
    ALS-New-Drug: New-Scam?

    April 14, 2016 ENV 23 Comments

    UPDATE – June 29, 2016: Apparently the site is back and whining that ALS Untangled is somehow responsible for them losing “charitable funding”. ALS Untangled had nothing to do with RCH4 except having asked me to take the lead in gathering information about it from the provider and from patients. My initial assessment was indeed made quickly but was based on all the information currently available, and was made based on my decades of expert professional experience in identifying Internet scams. There is currently zero scientific evidence for any of the claims made of that website and the provider has been given multiple ongoing opportunities to back up the claims with objective evidence. I never made any claim of “criminality” – rather I feel that something is not right and that PALS should avoid injecting themselves with a completely anonymous substance.

    UPDATE – May 12, 2016: Apparently the domain owner, Michael Richards, pulled the site and folded up his tent. No idea what he told “his patients”. I have absolutely no guilt over this. If all it took was one person questioning the veracity of that RCH4 whateveritwas to make him pull up stakes, then there was nothing worth putting hope into in the first place.

    UPDATE: If anyone has attempted to obtain this drug and have retained emails or postal letters, please contact me so I can investigate further.

    BREAKING NEWS! (April 14, 2016)

    I was just alerted to a website advertising a new treatment for ALS (http://als-new-drug.com – text provided for reference but no link for reader safety). The site purports to represent a “group of retired scientists and doctors” in Europe who “discovered a previously unknown protein … which promotes ALS” and “designed a drug which safely stops production of the problem protein”. The site provides no references for the protein and a web search of the name given provides no relevant returns. The same goes for the given name of the drug. Neither is any information given about exactly who comprises this group so that their qualifications may be examined.

    Domain information is:
    Domain Name: ALS-NEW-DRUG.COM
    Registrar WHOIS Server: whois.publicdomainregistry.com
    Registrar URL: Updated> Date: 2015-09-04T02:32:35Z
    Creation Date: 2015-07-05T10:28:14Z
    Registrar Registration Expiration Date: 2016-07-05T10:28:14Z
    Registrar: PDR Ltd. d/b/a PublicDomainRegistry.com
    Registrant Name: Michael Richards
    Registrant Organization: Not Applicable
    Registrant Street: 56, Amanda Close
    Registrant City: Chigwell
    Registrant State/Province: Essex
    Registrant Postal Code: IG7 5JG
    Registrant Country: GB
    Registrant Phone: +7.981150350
    Registrant Email: [email protected]

    This raises a number of red flags and identifies it as a likely scam:
    1.There’s no identification of the “scientists” behind this
    2.There are no links to publications about the protein
    3.There are no links to publications about this new drug.
    4.The website is cheap, poorly-designed, and unprofessional.
    5.The website is registered to an individual in Great Britain with an obscured contact email address.
    6.The website is clearly designed to create anxiety in the reader about “missing out”, thereby making the reader immediately more amenable to the presumably eventual sales pitch for the “immensely expensive” drug.

    Without any evidence of efficacy, safety, or even the ingredients of this substance, I would very very strongly urge everyone to ignore this website completely.

    Leave a comment:

Working...
X