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ALS-New-Drug: New-Scam?

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: privacy@wzukltd.com

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.

34 thoughts on “ALS-New-Drug: New-Scam?”

  1. Are you the policeman of ALS Forums? What gives you the right to stand there and point fingers, We just might do you in. Yes just up and silence you permanently, I am using this drug no side effects and with fantastic results, can swallow again can walk again can talk again and is you threaten me I will kill you.
    Do you understand this, I have nothing to loose, you your life.

  2. Why do you stick you nose on the business of other people. My name is Osiyo Wado I and 6 others which are secret to you use this drin over a period of over 9 months with no side effects and outstanding results. We wish you to leave this alone. We really be up shit creek without a paddle if you scare our source away. Please we live on hope and this RCH4 PEPTIDE THE WALKING DEAD

    1. Your first post which included the death threat was not approved however it is preserved for INTERPOL (including your IP, which is the same in both replies) should you wish to continue with that.

      Now then, perhaps you don’t understand who I am. I am a PALS myself, diagnosed in 2005 and living completely quadriplegic and on a vent since 2008. My reason for the blog on my site is to use my engineering and scientific experience to help explain research and other issues for my fellow PALS. You’re free to disagree and I welcome [intellectual] debate. However, I also have decades of experience spotting Internet-based scams and this smells very rotten. My intent is to help others not be taken by this or any other.

      Moreover, I am actively investigating what this is and who is behind it. I would love to be wrong but so far the evidence points to something quite wrong. You may have been lucky so far but my mission is to help protect others. I am not preventing you from continuing if you wish. I would actually invite you to help prove me wrong by contacting me via my email or the contact form on this website. There we can discuss transfer of information that might well prove everything about this RCH4 is quite positive.

      In the absence of any such information, however, I stick by my warning that this is something for PALS to avoid.

      1. An open letter to ALS Untangled and Mr. Eric Valor

        Dear ALS Untangled,

        Your objective of pursuing the potential of alternative therapies on the principal of “The answer may be out there” is both novel and excellent. In fact it is an outstanding initiative for which you deserve great credit.

        We are a private charitable group who have been supporting PALS in 7 countries around the world for some years with a new molecule which we provide entirely at our own expense. We have never asked a PALS for money or contribution of any sort. We do not seek publicity or recognition, nor do we participate in any ALS forum or support group.

        Your Lead Investigator published the following malicious falsehood on the Internet on Thursday, April 14th 2016 without doing any prior investigation:
        “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.”

        It was not until after some PALS who we are supporting, immediately voiced protests on a number of web sites objecting to his posts, that he contacted us on Sunday 17th. April, in the role of your Lead Investigator.
        He stated to us: “We investigate the science behind these treatment options as well as patient experiences”.
        In view of the fact that he has no qualifications in either Medicine or in Bioscience, it comes as a surprise that he is the ALS Untangled Lead Investigator and responsible for drug assessment for submission to the ALSU scientific peer review body.

        In his belated first communication to us, he asked 14 “standard” (his word) questions of which 8 are answered on our web site. This demonstrates that he did not study it, nor did he do research to substantiate his untrue statement and unenlightened views before he rushed to publish within hours of first learning of our existence.

        He asked 2 “additional” questions including our capitalization. We are a private, charitable group who get no material reward of financial gain from our efforts and our cash resources are our own private matter. Such questions are arrogant, self opinionated, impertinent, and discourteous.

        Whereas we thank you for your interest, but obviously we will not be entering into any dialogue with ALS Untangled.

        Post script:
        Below is pasted copy of an email which was sent to our PALS friends in 7 countries. It is self explanatory.

        ========================

        Dear Friends,

        Many of our PALS friends in recent days have made us aware there has been speculative, uninformed, and highly negative postings on Internet forums about their ALS medication, RCH4.

        The posts have been published by a person who has never contacted us, and has not studied the ALS New Drug web site – as evidenced by the fact that he poses many questions which are answered on that site.

        He complains that there is no published information on the molecule.
        Nobody in the ALS community would help us, we paid all the development costs ourselves as a charity, did years of unpaid work and we charge nothing.
        Why should we bother to publish our data for the benefit of the very people who repeatedly refused to assist us all these years?

        Further, he claims to be the “Lead Investigator” for Dr. Bedlack`s well known ALS Untangled Organization notwithstanding the fact that he has no medical or scientific qualifications.
        Perhaps this is true, but if so, it would be surprising.

        In 2006, one of our group, a scientist specializing in immunology made a discovery which may be of profound significance for ALS, a condition for which there is no effective treatment.
        In the interests of compassion, we offered to gift our discovery to the Pharmaceutical Industry and to the.ALS research community
        Nobody was interested – even though all the research data was for free.
        The Pharmaceutical Companies could see no prospect of a sufficient size of market for the new molecule as the costs to get Regulatory Approval would be prohibitive.
        The ALS research community had their own beliefs and would not entertain a completely new scientific hypothesis in spite of compelling pre-clinical and clinical data presented to them.

        In 2010 the first PALS was treated. Numerous ALS clinics then wanted to do clinical trials of this new molecule for us that year and quoted Euro 1.51 million (US$1.8 million) – plus the immense cost of the molecule – to do a small, initial pilot trial of 120 PALS to satisfy the Regulatory Authorities to permit (if the outcome was successful) the move to a much larger clinical trial for approval.
        Over time, we approached the ALS funding sources and they have repeatedly declined to help us.

        By 2012, we had given up the project and abandoned any hope that this new treatment would ever become approved for ALS.

        As a humanitarian imperative, as the treatment appears to work far better than anything previously tested anywhere, we have supplied the molecule at our own expense to PALS around the world on a compassionate basis under a confidentiality agreement. We have spent our children`s inheritance on this.
        As we are now retired people, we can only afford to help a limited number.
        We have never asked any PALS for money at any time.
        Please refer to the web site page http://www.als-new-drug.com/about-us

        Whether or not you wish to engage with this forum person is a matter for you, however, we would remind you that as a condition of ongoing support, we require strict confidentiality and you may not provide any information about your correspondence to us or provide a copy of any of our communications with you.

        Thank you all

        RC Group

        1. The statements in this blog are my own initial personal opinions of RCH4, were not formulated using ALSUntangled’s Standard Operating Procedures (SOPs), and and do not reflect a consensus of ALSUntangled reviewers. I am just one member of ALSUntangled. Separately, I was asked to take the lead in helping ALSUntangled gather objective information about RCH4 for an upcoming consensus review according to their SOPs.

          The questions we are hoping to get answers for the ALSUntangled review are:
          1. What exactly is this drug and how did you discover it?
          2. How does it work?
          3. What is published on the mechanism?
          4. What pre-clinical ALS data are there?
          5. Are these pre-clinical ALS data published?
          6. How many patients with ALS have taken this?
          7. What are you measuring in patients with ALS that take this?
          8. What happened to those measurements?
          9. Over what period of time and how often are measurements made?
          10. Has anyone had any side effects from this drug?
          11. What percentage of people who take it have any side effects?
          12. What are the most common side effects?
          13. What are the most serious side effects and how often did these happen?
          14. Do you charge patients for this drug? If so, how much
          15. If not why not and how are you capitalized?
          16. Will you identify the members of your group so that their qualifications can be examined?

          I have indeed studied your website but did not see the answers to these questions. I would invite your help in finding them.

        2. Hello RC Group,

          I am sorry that we have gotten off to such a rough start here. We can at least agree that we are all very passionate about ALS!

          Eric is indeed a member of ALSUntangled and, in addition to his engineering background, he brings us an important and much needed patient perspective. I asked him to start systematically gathering information on RCH4 for an upcoming ALSUntangled review on this. Our reviews start with a set of questions we submit to the proponents of each treatment. After we (hopefully) get these answered, we have a standard operating protocol by which we gather other data toward completing a Table of Evidence for each treatment. Finally, our team of 100 clinicians and scientists goes over a draft until we come to a consensus, then we publish the review.

          As Eric has pointed out, the above blog statement was his own initial opinion he formed after reading your website. It was not formulated using ALSUntangled procedures and is not an ALSUntangled consensus opinion. It is not the first time one of our ALSUntangled reviewers had a very strong initial individual opinion about a treatment; after all the data are gathered and discussed, these opinions may change. I myself thought fecal transplants for ALS sounded dubious, but after our team finished our research we concluded that they definitely warrant further study and now there are several micro biome studies underway.

          I hope we can find a way to work together to systematically and objectively shed some more light on RCH4, with the ultimate goal of helping patients and families make more informed decisions about their ALS treatments.

          -Rick Bedlack MD PhD

  3. Eric:
    As a former program director for NSF who has handled evaluation and eventual funding (and more rejection) of a number of research proposals, I can say that you have prejudiced yourself by the above blog to do any objective evaluation of this drug or not to influence others. Further, you have been a compassionate patient for another peptide and appear to have taken side with that manufacturer with their FDA approval etc. (if I recall correctly); another big red flag to be an objective evaluator (at NSF, they call it conflict of interest and expect everyone to document any such conflict in writing and recuse themselves, whether reviewers or officials of NSF, if necessary). The group seems to have given enough information in terms of the drug (RC4), cost (none) and so on. If the folks involved in the development wants to remain anonymous, who are we to to question it at this time (unless we have our own COI).
    Having said that, I, who has not taken any side so far on the merits of this drug, would hope any users (patients):
    1) Are also not conflicted in any way (getting compensation for putting out good words etc.),
    2) would run away from the drug or the company if there is any request for money at any given time (no need for compassion towards the company from your perspective at this time; if you made a big improvement in your health, then you decide),
    3) Share if there is any good news or bad news as quickly as possible
    Thanks
    Dr. OG

    1. To clarify, this post was made based upon over a decade of personal experience with such matters. The blog represented my own initial impression based on the rather scarce information presented and some personal investigation into the hidden identities of the people providing this substance. Further, it was made prior to being asked to take the lead in a deeper investigation to gather more data which would prove or disprove the hypothesis put forth. I would beg to differ that the group has “given enough information”: We don’t have any objective information on the scientific rationale for the substance, no objective information on preclinical studies, no objective information on the ingredients (I invite everyone to do web searches for “RCH4 Peptide“), and no objective information about the people behind this substance. Without such objective information, we are left only with unsubstantiated claims of which, as a former NSF Director, you should be quite wary.

      To further clarify my involvement with the other peptide, GM6, my actions were intended to push for faster development of the drug. I wanted to help a very small and under-capitalized company obtain quicker funding for development and simultaneously put pressure on FDA to ease the path for approval for treatment options for life-threatening conditions. Some headway was and is being made with FDA (see http://www.hopenowforals.org) but Genervon decided to stop development and instead sell GM6 via email marketing and self-published press releases. At that point our cooperation ended. My involvement has been very public and I definitely recused myself from the ALSUntangled investigation thereof except as just another patient having had experience with GM6.

      I don’t have any dog in this hunt. My only desire is to find something with clear efficacy and to use my skills and experience to help protect others from something which is dubious at best. I invite further information to be provided which would disprove my initial assessment. However, barring further evidence to the contrary, I must let my first assessment stand.

  4. Mr. Valor, You have a respected reputation as an activist on behalf of PALS, however, on this occasion you made an error of judgement. In the interests of the ALS/MND community, as requested by others on the Internet, kindly remove BOTH this blog page (a libelous title of: “Breaking News !” “NEW-DRUG NEW-SCAM” ):
    http://www.ericvalor.org/als-new-drug-new-scam/#comment-1837

    AND and the following page:
    http://www.ericvalor.org/tag/als
    To err is to be Human. You will be admired even more for doing so.

    Thank you

    RCH4 Charity Group

    1. I must politely decline your request for reasons already stated but I will nevertheless repeat. My assessment was based on the very few objective facts currently available and my decades of experience with Internet hoaxes. There is no verifiable identity of the people behind this RCH4 (except for the identity revealed by the public domain ownership records and IP address geolocation). There is no verifiable identity of the ingredients or structure of RCH4 and searches of medical literature reveals nothing about it. There are no factual references provided about the theory behind RCH4 and no references provided showing any objective scientific rationale. There is no protocol provided for proper dosing or follow-up using accepted measurements. Right now all I have are claims from an anonymous person and a few anecdotal stories from patients lacking independent verification from their doctors. This right now is little more than the spam I get every day from “spell casters” and “herbal healers” which promise to cure everything from dandruff to ALS.

      However, I would be very pleased to be wrong. That’s why I accepted the assignment from Dr. Bedlack to gather all the facts available for ALSUntangled according to their established protocol for investigation. This post was my independent personal assessment not associated with ALSUntangled (note that I have since recused myself from this ALSUntangled investigation although I would be willing to forward any objective evidence sent to me). Given the proper objective and verifiable facts proving contrary to my initial assessment, I would be more than happy to print a full retraction.

      I am after the truth, not anonymous claims. Without any cooperation or facts proving otherwise, my initial assessment stands. It is based on objective evidence and my decades of professional experience.

  5. RC Group stopped its charity program because of you and your unnecessary and unfounded opinions. I am the recipient of RCH4 for two months and I’m happy with it. It is a short time to determine how effective it is but it was really free and delivered into my house. I do not know who others would like to give own work and invention for free to many people ?? And you took away my hope. Not only me, but also to other PALS who wanted to try the drug for free, even if the minimum efficiency, it is still more than what other researchers are doing. Are you feeling better now? Are you satisfied with yourself, Eric?

    1. All I did was provide an expert opinion of severe skepticism based on the objective evidence available, then gave the person(s) behind it multiple opportunities to prove me wrong. Otherwise I did nothing at all. Whatever this person’s motivation for his actions has nothing to do with me. Blame the person for being a flake not me for trying to shine light on a shady character. And please be more careful in the future where you place hope and what you inject into your body. I have seen PALS seriously hurt themselves and drain their bank accounts with poor decisions about highly dubious “treatments”. That’s one of the major reasons I started this blog.

  6. Why do you expect that someone else will provide his invention. He can rightly assume that someone else may enrich his work. I do not think that you would not have you think so. But someone could.

    1. I don’t understand your comment but if I try to translate, that argument fails. There are plenty of ways to protect intellectual property with the use of patents. In the scientific and medical worlds, if one makes claims of a new medicine, one better be able to prove it. Anything else is just quackery and/or a scam.

  7. Eric,

    I am a little unsure on why you did not start this investigation with an open mind from the start. There are so many cures or treatments in past history that were dismissed in early days by sceptics but then in future years have proven to be viable. It seems that you tarred RCH4 with the ‘Scam’ title before getting any facts first and based everything on the Charities website that does not supply info you required. I agree most things are a scam out there but surely you must get some evidence first before titling it ‘ A new Scam?’
    My wife is a user of the RCH4 drug and has had great results over the last 9 months and whether it be the drug or placebo, we are both very grateful for the treatment. We have never been approached for any money and have always received very professional advice. Just from the fact of never having to pay any monies, I find it hard to be called a scam. I now learn that the sponsors of the drug are withdrawing sponsorship because of the bad press, I believe started mainly by yourself. Therefore we will not be receiving any more RCH4 unless new sponsors are found. I do not blame this on you at all as reviewing is part of your responsibility. I just wish you had contacted people using the drug before putting it out there that it is a possible scam. This is so sad for both my wife and family, and also for the reality that this drug isn’t going to get the testing that it really deserves. I’m unsure how many others are on the drug, but if they are seeing the same results as me, they are going to be distraught, as it is a death sentence for them, the same as my wife.

    1. I have been living with ALS since 2005, completely quadriplegic and living via mechanical ventilation since 2008. I am very aware of the desperation that comes with the disease. I have also been around long enough to have seen quite a few scam “treatments” offered to patients for a variety of prices (including free). I did begin the investigation with an open mind, hoping to find some shred of evidence that could justify the claims made on the website. All I found were a few woefully misinterpreted study papers and zero identification of anyone involved in the project save one individual in a suburb of London with no scientific credit to his name. Further, there was absolutely no published scientific literature on the substance being promoted. That’s when I put out my warning to other PALS.

      Then I tried to contact the promoter of this anonymous substance looking for information I might have missed and was answered only with paranoid hostility. In the years since my diagnosis, I have become an actual scientist collaborating with other real scientists on actual scientific research into drug development. I know how the development process works. And real scientists are not secretive and paranoid. They share information about discovery in the interests of pushing knowledge forward. And they do not privately ship vials of an unidentified substance around the world for patients they have never met to self-inject at home. And they don’t force their patients to sign nondisclosure agreements on threat of access withdrawal to prevent them from talking to another scientist inquiring about their experiences (you see, I did try contacting patients and they were forbidden from responding to me).

      You want to back up your claim of “great results over the last 9 months” perhaps you can forward copies of her medical records to Dr. Richard Bedlack, including the observations of her neurologist both before and during your wife’s treatment with this substance. Be sure to include copies of the objective tests s/he did on your wife to measure function. Anything less is just a story.

      I made a judgment based on my decades of professional experience in spotting phony websites. I also used my more recent years of experience and knowledge gained in ALS neurology, which I used to create my own research organization currently doing ground-breaking research into a possible treatment for ALS (http://www.sciopen.org), to spot phony pseudoscientific claims from some anonymous bloke brewing God only knows what in his suburban basement.

      My identity, credentials, and work are well-identified. Until this chap reveals himself and some actual science behind what he is doing, including the identity of the substance he is producing, I will warn PALS to avoid it. Period. My opinion is based upon all the facts in evidence. If he wants to change that, he knows what to do.

  8. Eric,
    I can understand why you want answers to the questions you pose. However, a drug should first be evaluated by the results it produces – does it work, and what is its efficacy?
    Patients Like Me show 30 evaluations, where nearly all of them are ‘major’, and over a long period.
    I believe it is extremely expensive to take a drug to trial, and the only other way to evaluate a drug is through patient evaluation. PLM is testament to RCH4’s efficacy.
    If the information you require was available, and the results were less convincing, I imagine patients would not be tempted to try a drug. Considering the PLM reports, and as the drug is provided free of charge, I think ‘scam is too strong a word to use for RCH4.

    Thoughts Eric Valor and Rick Bedlack?

    I have not posted my name as I don’t really want to get caught up in this argument. I just wanted to air my thoughts.

    1. Thanks for your thoughts and I will keep your name undisclosed.

      Unfortunately, patient self-evaluations are notoriously unreliable, especially in a disease as highly variable as ALS. Back in 2006 there was a report from Italy that low-dose lithium had produced remarkable results in a small trial with human patients. A follow-up was demanded by excited patients and when no interest was shown by the research community, a group of PALS created their own trial (I helped organize it and participated). It had over 300 patients and proved lithium was futile as a treatment for ALS.

      Nevertheless, a few patients started reporting after a few weeks that they had dramatic improvements. One patient had a video showing him getting out of a wheelchair and riding a bike around in the snow. That PALS is no longer alive – he passed 18 months later from respiratory failure due to ALS.

      That’s why ALSUntangled asks for the information it does in its investigations. ALS is impossible to properly evaluate from outside physical observation, which is why so many tests are run to exclude other possibilities. Our experience with RCH4 has been one of intense evasiveness to the point of hostility. It is demanded that we simply take the word of an individual who refuses to identify himself. That is not going to happen. We require objective verifiable facts, not stories.

      In my personal case, I was asked by a friend to quickly render an opinion on RCH4 without knowing it was already on the ALSUntangled radar. I read through the site and found absolutely zero information of substance, including intentionally-vague references to some “team of retired scientists”. I looked up the published medical reports purported to support the science behind the and realized they had nothing to do with the issue and were misquoted and misinterpreted – the telltale sign of an amateur. I looked up the owner of the domain and website and found an individual with a home address is a northeast suburb of London, and found no reference to him in PubMed (even I am listed there as a researcher). So, based on my many years of professional experience spotting scam domains/websites and what I have learned in my years of personal study and conversations and working with accredited researchers, I made the only judgment I could based on the available information. After talking with Rick, I undertook the task of further investigation for ALSUntangled. Scientists are always open to new information which may challenge and change their previous understanding and so was I. I was then met with pretty swift hostility and forced to abandon my efforts. Mind you, I am a PALS who is totally quadriplegic and on a vent so undertaking such an investigation requires considerable effort.

      So we are all left with a choice. Either the person behind RCH4 comes forward with the information requested or ALSUntangled remains forced to render “no comment” on the subject. My personal judgment must also remain as-is. In fact, the longer the individual maintains his evasive and aggressively-hostile position, the more and more it gives credence to the “scam” judgment. Some anonymous individual who has zero training and/or experience and is brewing some unidentified substance which he sends to PALS with instructions to inject themselves. I cannot and will not do anything but warn fellow PALS to stay very far away.

  9. Dear Eric,
    You said you ‘looked up the published medical reports purported to support the science behind the and realized they had nothing to do with the issue and were misquoted and misinterpreted’. Could you show me the links you mention? I couldn’t find them. And where did you get the specifics of these reports so you could look them up?
    You can email me direct if you prefer.
    Thank you,
    Kim

    1. Hello Kim. The promoter of RCH4 used to have the titles of the published studies on his website but after many changes since it first appeared on my radar he removed them. I don’t know if he has since reversed that but at the time I was able to simply google the titles and read the studies purported to support the mystery substance’s use as a therapeutic for ALS. They did anything but. Since he refuses to divulge the identity of the substance (even to the PALS to whom he sends it) it’s impossible to evaluate its worth as a therapy. Whenever this person decides to cooperate, a proper evaluation and recommendation can be made. Until then my recommendation is to avoid anything unknown, especially when it’s administered via injection.

  10. Is it possible that someone (Like “Marlon” on this blog) using this medication send you ONE dose to analyse it by you or by an official lab?
    It would close the debate… I’m sure it’s possible to identify the molecule in a lab, reproduce it and make a valid clinical trial/adverse effect profile!

    1. You would think that and you would be right. However, the guy brewing this stuff in his basement (or bathtub) doesn’t tell the people to whom he sends it what it is. And he has forbidden anyone doing what you suggest on penalty of being cut off (really compassionate, eh?). He is extremely paranoid about identifying what the crap is and also quite paranoid about anyone finding his identity. That’s what really confuses me about this: People are injecting a substance they don’t know what it is from a guy they don’t know who he is. It makes no sense.

  11. The only negative to RCH4 is E.v. Shame on you you are calling liers to all on PLM reporting their progress. Pure Poison Sir shame on you indeed.

    1. Au contraire – the negatives are that nobody has been provided any evidence of how the stuff is supposed to work, any evidence of any previous research supporting its use in humans, nor any evidence of efficacy in humans. A few sparse reports on PLM don’t cut it.

      And nobody knows what’s in the vials being shipped internationally in violation of numerous laws.

      I presented my evidence supporting my informed opinion that this is a scam. I invited presentation of evidence which could refute my opinion and was given only unwarranted hostility including threats on my life. Another seeking evidence was met with a coordinated attack on the person’s career. All of this was coordinated by the promoter of the unidentified substance who goes to great lengths to hide his identity even from his desperate customers.

      What is he hiding?

      Since you are in the UK you are probably just yet another fake user being portrayed by the promoter to give the illusion of popular support. It’s pretty pathetic. You should know that I can see your IP addresses.

      1. No Sir, I am far from fake or any kind of scam. You can see my intro on most ALS forums user name TIANDB.
        Most of the PLM patients are contactable and why would they be fake ?
        Your mind Sir seems warped in some way ? I have fast progressing ALS and have been on a very slippery slope down.
        I saw through the information displayed on many forums and realised all was honest and decent with RCH4. Why did you find an 100% opposite view and start a scam blog ?
        Why ? It is not up to you to delay any possible beneficial treatment for this sad condition but you have and with your hobnailed boots on NOI. Sad indeed.

        1. Perhaps you should learn to read and understand this blog was started long before RCH4 was conceived. I was asked to review the mystery substance by a friend. Upon my few hours of review I uncovered numerous red flags including a promoter with multiple names and some unidentified “research team”, studies claimed to support the theory of use which bore zero relevance to the claimed subject and which betrayed a shocking lack of scientific understanding by the promoter, and absolutely no foundation in PubMed including no mention of the promoter.

          If everything is “honest” as you claim, pray tell what exactly is the mystery substance? If you don’t know that you are a fool for injecting some unknown substance from some unknown person into your veins. If you can’t understand the folly and danger in that then I can’t help you.

          Furthermore, when I was asked to spearhead the information gathering for an ALSUntangled report on the subject, we were met with the aforementioned barrage of hostility including the promoter requiring his customers to sign an (legally unenforceable) NDA stating that they could not share any information whatsoever with me or ALSUntangled on pain of being denied further shipments of the mystery substance. We gave the promoter multiple opportunities to provide evidence but every attempt was met with nothing but hostility. Why the unprecedented secrecy if everything is so “honest”?

          But you are a “True Believer” for whom logic and reason are an anathema. I do not hope to persuade you but rather to expose your lack of judgment and the ridiculous pact into which you blindly entered and by which show others the folly and danger inherent in the mystery substance.

          1. I am on the fast slope down not the slow one. I will try whatever within the law to try to extend my dignified existence. That 22 patients have submitted details of treatment should have changed your aggressive stance in defending your “Scam ” Bs. People do not have to agree to your way of trying to poach information.
            The information on the website is enough to show those of us trying for a longer life that no scamming is involved, only your negative sway has prevented many more from benefiting from a drug which safely has been shown to work for over 80% of ALS patients, after over 3000 doses with no side effects shown.
            Surely you in your condition would realize after over two years of your headline grabbing news it RCH4 is still treating some and extending lives. Free
            Time you should man up and change your title or even delete it, your spidey sense was wrong on this one.
            For the sake of other PALS who may benefit and
            with sadness for those that may have lived a longer life.

            https://www.patientslikeme.com/treatments/show/28469
            Show me a better treatment ?

          2. blah blah blah.

            The rule is simple: Either submit relevant and independently-verifiable evidence or the posts remain. Period. End of file.

            That sob-story about little old me causing “investment” to dry up is betrayed by the fact that you yourself stated: Years later the promoter is still providing the mystery bathtub brew. People who were supposedly helped by this “miracle” have stopped reporting and/or died so obviously it’s not really such a wonderful treatment. Unverified accounts on a website mean exactly nothing.

            Tell you what: You provide me his real name and a postal address where I can reach him and he and I can discuss the issue between us. An office or some postal box store do not count. I need his home address and real name. I have tracked his IP addresses and know the areas he frequents so I will know a fake. I believe I am addressing him and his fragile ego right now.

            To summarize, either provide proof and a real identity or the posts stay. Nothing submitted thus far rises to that admittedly low mark. Anonymous stories certainly do not.

            I shall not approve any more discussion on this until the requested information is given.

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