Page 13 of 41 FirstFirst ... 3111213141523 ... LastLast
Results 121 to 130 of 401

Thread: Rch4

  1. #121
    Forum Member
    Join Date
    Jun 2017
    Posts
    19
    ccinjersey
    May I help you. I use rch4. You dont need to be baffled, repeatedly asking the same questions and frustrating yourself about the rch4 charity. Just study the whole web site (but it will take time) the answers are there if you look for them, example in the about us page.


    A few things about postings here. There is rch4.com site that is sponsored by PALS who take it (I dont know who or where they are) According to the footer on the charity site there is no connection.

    Posters continually refer to the claims made by the charity. Read the web site. They certainly make no claims at all.
    Posters complain about secrecy. The web site says their scientific papers are declined for the ALS annual symposiums and includes a copy of a refusal by the organizers, the MND Association.

    You reasonably asked why not have it available for everyone.
    I dont know, but it probably costs them $1,000 per month to treat me (say one tenth the cost of radicava)
    It needs at least a phase 2 clinical marketing trial. Google says cost $8.6 million
    Not sure but I think the FDA charge $1.8 million to issue a marketing license
    Where is a charity untruthfully besmirched as a scam by forum trolls going to get that much money?

    You say that ALS Worldwide has apologised for their untrue statements about rch4.
    They did apologize for saying rch4 is Edaravone, but have not apologised for their other untrue malicious statements which they made afterwards.

    We got an email from the charity pointing out that ALSW has not apologized for their damaging allegations and drawing attention to the huge money they make from PALS while masquerading as a non profit charity.
    You said you admire them, but you are suspicious about the rch4 charity.
    Maybe we should all think again.

    As far as I am concerned, after far more than 2 years almost stable so far, I believe I owe my existence to rch4 although it has not cured me. Just extremely glad to be having a good life. I dont care who invented it or how it works. I dont know about my blood pressure pills either. My fear is that with all the trolls and naysayers on forums having collapsed their funding by accusing them of being a scam, that we will not have the drug for much longer. Those trolls dont care that they may be signing the death warrant of others. Outrageous.
    I offered to pay toward their cost of treating me but the charity declined.

    One other thing. I dont take any other ALS meds.

    Anyway that's my pennyworth input to the discussion for what it is worth.

    Don

    Here is the email we got


    To our PALS friends:

    For your information, below is an open letter to Mr. Stephen Byer, Chief Executive of ALS Worldwide who yet again, has not replied to us.
    He is one of many people who have made untrue and very damaging allegations about your RCH4 medication, including Forum moderators who have alleged that your RC Charity is a "SCAM".

    This ongoing witch hunt makes it impossible to find alternative funding to replace that which we lost due to that word - SCAM.
    Just Google ` RCH4 `.

    ...................................
    ALS Worldwide selling counterfeit drugs and their untrue statements appearing on the Internet
    Letter to Mr. Stephen Byer, CEO of ALS Worldwide



    Dear Stephen,

    You did not reply to my last email of eight days ago re. your abusive language and your untrue statements.
    [FONT=Helvetica][FONT=arial][FONT=arial]
    Your operation:

    You have no permission from Mitsubishi Tanabe (the true manufacturer) to use their trademark, directly or by implication, your counterfeit has had no clinical trials, has no clinical data, no safety data, no pharmacovigilance, has no Regulatory Authority approval and no marketing authorisation. These are required to sell any drug for a profit.

    The so-called "non profits" are scamming PALS of $millions.
    What is being sold is NOT Edaravone/Radicava but usually a cheap laboratory reagent from counterfeiters normally in China, Russia or India.

    Refer to www.als-new-drug.com/molecule
    ..........................
    Your ALS Worldwide email footer says:

    "ALS Worldwide is a nonprofit organization

    NONPROFIT?
    An examination of your filed accounts demonstrates that to be a wholly disingenuous statement. It supports your large salary and extravagant travelling lifestyle.

    Post Script:
    Extract from ALS Worldwide United States IRS form 900, most recent filed accounts signed by Mr. Stephen Byer:

    Executive salaries:
    Mr & Mrs Byer $180,000
    Daughter $ 60,000
    Son-in-law $100,000
    Total for family $340,000

    None of whom are medically qualified.

    It is understood that they work from home.
    Charge for use of "Facilities" $167,000

    Mr. and Mrs. Byer travel the world endlessly. (A letter to us from Mr. Byer in April 2017 confirms this).
    "Expenses" $520,000

    Total sum withdrawn by the Byer family is $1,027,000 for the year.

    End of Post Script.


    Continuation of email footer:
    that strives to help people with ALS live better and longer by providing free guidance,

    FREE?
    Those who allegedly have contacted you, who then chose not purchase your offerings, publicly remarked how short the guidance lasted.

    GUIDANCE?
    Your Skype "consultations" are nothing more than a sales pitch to buy your counterfeit drugs.

    care and support to patients and their loved ones in more than 150 countries"

    CARE? What care?
    ALS Worldwide provides no care as it is not medically qualified in molecular biology or neurology.
    Does ALS Worldwide maintain constant communication with every paying customer, maintain a clinical file and database on each and every one, and obtain monthly follow-up monitoring reports for every individual, year after year to facilitate case management?
    NO.
    The RC Charity Group does.

    SUPPORT? What support?
    The RC Charity Group has for years provided care and constant support right through to getting voluntary unpaid help for PALS and their care givers, worldwide, when they are in crises - truly all for free.
    Has ALS Worldwide ever offered such support?
    NO.
    .........................


    Your following totally untrue words have been published on the Internet about this charities drug RCH4:


    1/ You wrote: RCH4 is Edaravone
    You apologised for this, explaining that you were tired.
    Thank you for that.
    But then you wrote the following:

    2/ RCH4 is sodium chloride
    This is untrue and you know it from our correspondence in 2017.

    3/ Your untrue statement:
    "As for Rch4, the sodium chloride product frequently discussed by Richard C of RC Charity Group"
    You are well aware that I never said any such thing.
    I have never spoken, or written, either of the words "sodium" or "chloride", individually or collectively, to you or anyone else in connection with ALS or RCH4.

    4/ Stephen, you have absolutely no evidence to substantiate your following words:
    "We have not seen any relevant benefit [For RCH4] amongst those who have used the protocol"

    According to many PALS around the world posting on the ALS forums, there is indeed benefit - far better than anything else - including genuine Edaravone/Radicava.
    www.als-new-drug.com/efficacy


    ALS Worldwide has no statistical, clinical, safety or efficacy data of any sort for its counterfeit.

    The RC Charity Group publishes independent statistical and clinical efficacy data for RCH4 every year.



    Please now publish an immediate apology and retraction of your untrue statements:


    http://forum.mndassociation.org/show...highlight=rch4

    If your apology and retraction does not appear by 1:00 hours USA EST Thursday, April 5th. This letter will be released together with information and facts about you, including our correspondence with Mitsubishi Tanabe, to our PALS friends around the world. They are very likely to publish it and contact the FDA office of Criminal Investigation.


    Thank you Stephen.
    Please........... You are in the wrong. Now do the decent, right, and honourable thing.





    RC Charity Group



    Last edited by Doblett; 19th April 2018 at 02:36.

  2. #122
    Forum Member
    Join Date
    May 2017
    Posts
    20
    Just updating. My wife is still doing very well and still taking RCH4. Still no real progression for about 2 years now which is excellent news. Gotta say after reading the above posts, I wish that all sufferers out there could be treated by the RC Charity, so you to could see how helpful, professional and compassionate they are. Cuts deep, when I see others make assumptions and accusations on here, just because they don't have all the facts.


  3. #123
    Forum Member
    Join Date
    Dec 2013
    Location
    Surrey
    Posts
    422
    Marlon:
    I wish your wife the best outcome. She is doing amazingly well. Keep it up.

    Charles

  4. #124
    Forum Member
    Join Date
    Sep 2012
    Location
    USA
    Posts
    3,391
    Thanks for your post Doblett

    But the Charity still remains a mystery to me. Maybe one day the 'Charity' will reveal themselves to the ALS/MND medical community, and let them know they created, and have a treatment for ALS that possibly stops or slows down progression that no one else has been able to do as of yet except with possibly Radicava . Maybe one day it will be available for all that need it. We can only hope and pray that will be the case.

    Also, people that are seeking treatment, and want answers to unanswered questions to a potential drug that could be life altering for them should not be called 'trolls', and 'naysayers' simply because they are seeking answers that are not forthcoming.

    Also in the Charity's email they state 'Just Google rch4' I had done all that, and the information I found is vague, with nothing but confusion surrounding the drug, and those that created it.

    As far as ALS Worldwide, they only made their statement because I and some else here asked them if they had any information on this drug, They did not maliciously attack the Charity as stated above they only commented to emails sent to them, when in reality they are the ones being publically attacked here.

    I too wish much continued success to all those taking this drug, as well as much success to those wanting to give it a go.

    CCxox
    .

  5. #125
    Forum Member
    Join Date
    Jun 2017
    Posts
    19
    Hello ccinjersey
    Thank you for answering my post above.
    I tried to help you by showing you that your repetitive questions are indeed answered.

    You reply to me included
    a treatment for ALS that possibly stops or slows down progression that no one else has been able to do as of yet except with possibly Radicava

    Radicava works in 7% of PALS and for those, it slows the progression by 33% according to the manufacturer.
    Rch4 works in 84% of PALS and for those, it slows progression by 71% according to PALS themselves from around the world. The rch4 charity make no claims at all themselves and point this out on their web site.
    As for myself my progression has slowed by 88% over the years taking it. My decline was constant for 22 months immediately before I started rch4.

    You went on to say
    people that are seeking treatment, and want answers to unanswered questions to a potential drug that could be life altering for them should not be called 'trolls', and 'naysayers' simply because they are seeking answers that are not forthcoming.

    What other descriptions can persons like Eric Valor, and other forum moderators be called, who immediately labeled the charity a "SCAM" without even contacting them?
    I make suggestions. The words "Evil", "Egotistical", "Self opinionated".
    I have looked it up. Refer to http://www.als-new-drug.com/alstdi
    These trolls and others (by continually sniping at rch4) are endangering my life if I cannot get more of the dug.

    You went on to say
    Also in the Charity's email they state 'Just Google rch4' I had done all that, and the information I found is vague,

    The information is certainly not vague A NEW DRUG A NEW SCAM

    ccinjersey, perhaps you could review your admiration for ALS Worldwide
    ALS Worldwide allegations about rch4 were deliberately untrue and very damaging to the charity. Read the email above. They are trying to sell their own counterfeit drugs.
    The real scam is the Byer family of 4 pulling $1,027,000 out of an ALS "Non Profit". Again see above. I too have now also found their accounts and see that the total income was not a lot more than that. Therefore they are buying the stuff very cheap.

    Thank you for replying to me ccinjersey. Relax and give up your obsession (we all have obsessions) about secrecy. There is none about rch4 as we know where it comes from and it works. We are bound by a confidentiality agreement and am happy with that as they pay for my treatment. If you enroll in a Pharmaceutical company open label study you will also sign a similar form.
    People often post that rch4 people only select those special few. That is untrue as they accept anyone who asks them for help if the charity has the money.
    The real secrecy surrounds all the counterfeits being sold by numerous non profits (they call them `generics` but they are not) where PALS pay a lot of money for something that they do not know where it came from and do not realize it is a counterfeit.
    Something else to be noted is the fact that the real ALS Worldwide web site owner is hidden behind a proxy located in Arizona so it cannot be traced.
    Think about it.
    Last edited by Doblett; 19th April 2018 at 17:13.

  6. #126
    Forum Member
    Join Date
    Dec 2013
    Location
    Surrey
    Posts
    422
    CC:
    I am interested in the following from purely a scientific perspective:
    In your research/inquiries have you ascertained what the chemical ingredients of the muti are?
    What is it comprised of?

    Charles

  7. #127
    Forum Member
    Join Date
    Sep 2012
    Location
    USA
    Posts
    3,391
    Hi Charles

    I can't answer that question. I never found any information on what the drug itself actually is. I googled again after you asked to see if I missed it somewhere, but again could not find the information. Maybe those that are taking it would know better what it is comprised of ??

    I did find this post on ALS Forums. Again you will see just more confusion and unanswered questions, you can see more of the questions there about this drug on that site.

    It would be great if ALS Untangled could provide concrete feedback and information about this drug, maybe that would put to rest all the unanswered questions, and mystery that seems to surround this medication, and more importantly answer the question if it is all a 'scam' or not.

    I would assume Charles the only way to know if this medication is effective and safe is for a person in need of it to give it a go if that is something they truly wanted to do and can get their doctor on board with them to do so, so that they can at least try.

    CCxox

    *****

    Re: RCH4 Drug stopped by Dr. Bedlack

    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).
    .

  8. #128
    Forum Member
    Join Date
    Sep 2012
    Location
    USA
    Posts
    3,391
    Doblett

    I will take the time to forward your post to Stephen Byer the founder of ALS Worldwide with the hope he will respond to the accusations his organization is being accused of.

    I know if I founded a nonprofit organization with the intent of helping others, and knowing the true integrity of my foundation I would want to respond to these claims if they are indeed ‘false’.

    Maybe we will hear back from him maybe will not ? I can’t speak for them, but again ALS Worldwide had nothing to do with rch4. They did not join in on this discussion on this thread they simply responded to two emails sent to them regarding rch4 which I posted here in order to share their response with others seeking information about this drug.

    For the record in the US a good majority of our medication prescribed by our doctors are given in generic form because the cost is cheaper unless the doctor specifically indicates ‘daw’ dispense as written.

    Also to clarify to Doblett, rch4 is not an ‘obsession’ of mine as you stated. I have watched what the effects of this illness has done to my best friend for the past six years, if there is a ‘real’ treatment out there to combat this illness that I was to become aware of I would indeed seek out all the information about it, and knock on every door, and pound on it if necessary in the hope that it could be placed in her hands.

    I agree with the ALS Forum member in his above post when he states; ‘ “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 obfuscate” ‘

    CC
    Last edited by ccinjersey; 20th April 2018 at 00:28.
    .

  9. #129
    Forum Member
    Join Date
    Jun 2017
    Posts
    19
    ccinjersey
    Please stop targeting the only people who ever gave anything for free to a PALS. Not only that, but they always provided great support at all times and never asked for money.

    What is amazing is the fact that the ALS community themselves are intent on killing off an innocent charity who provided for free the only drug that actually works (see many dozens of posts from users over the main internet ALS forums). Some have even published their clinical reports. Most feel that is a private matter and I must say I have not published mine either for same reason.

    You stated above
    Maybe one day the 'Charity' will reveal themselves to the ALS/MND medical community, and let them know they created, and have a treatment for ALS that possibly stops or slows down progression that no one else has been able to do as of yet

    They tried the best possible way to (your word) "reveal" the information. You did not read their web site carefully enough. They show a copy of the MND association letter of refusal of their papers for the annual ALS symosiums in a link on the page
    http://als-new-drug.com/about-us

    You also stated above
    I know if I founded a nonprofit organization with the intent of helping others, and knowing the true integrity of my foundation I would want to respond to these claims if they are indeed ‘false’.

    The charity did. Again I quote the reference
    http://www.als-new-drug.com/alstdi

    also

    http://www.als-new-drug.com/bedlack

    You agreed with the statement
    When someone makes a claim of efficacy as an ALS treatment, that person has an obligation to PROVE that claim

    Again, if you bothered to read the web site you will see that the charity says (I copy) "No claim of efficacy is made nor any interpretation of data is offered"
    ccinjersey where are the claims?
    If you are referring to PALS who use it, I have no obligation to prove anything to anyone. I and my fellow users of rch4 would not wish to try to influence anyone. If someone wants it, it is up to them to ask for it. I am not my brothers keeper, I am only interested in my own great fear that rch4 will finish due to lack of funds.

    You have chosen to publish Mr. Eric Valors tirade from 2 years ago. He published as the lead investigator for ALS Untangled that the charity is a "SCAM" without even firstly contacting the charity or any of the many users in the public domain. His untrue allegations started this witch hunt, perpetuated by people like you and forum moderators some of whom are little better than trolls, and collapsed the charities funding.

    As for Dr. Bedlack, the chief of ALS Untangled, Eric Valors boss, apparently he does not reply to users of rch4 who protest to him.

    You ignored the many more posts which denounce Mr. Valor both from rch4 users and independent bystanders.
    He has no educational qualifications whatever, other than a correspondence course in software and no experience in drug development, despite his untrue claims.
    He is one of the arrogant, self opinionated liars who are threatening my life and that of others.
    This is a very serious matter.

    As for you forwarding the charity open letter to ALS Worldwide, I am given to understand that your friend who you admire so much, Mr Byer, already has this letter but he failed to reply to the charity. No doubt he will reply to you with his smoke and mirror persona explaining why his family need $1 million a year not to provide support to PALS.

    ccinjersey, give this a rest. Please help me and other PALS. People only get upset reading your unending dogged hostility. You are hurting other PALS. Over the past 5 years you have made 45 posts per month. If you are unable to say something good, then please say nothing at all. This is unhelpful for you and unwise.
    Reasonable minded people here will readily see the truth.

    Thank you ccinjersey. Don.
    Last edited by Doblett; 20th April 2018 at 02:26.

  10. #130
    Forum Member
    Join Date
    Sep 2012
    Location
    USA
    Posts
    3,391
    I’m not understanding why my intent is so misunderstood?? I was seeking information on a drug that those taking claim is stopping or slowing down their progression. That to me it sounds like a miracle drug that those living with this illness have been waiting for, so I wanted more information on it, what is the harm and danger in that Doblett ????

    I was seeking answers to the questions…my own questions, and I shared the information I found. It’s that simple.

    Please don’t twist it around to make me out to be the bad guy here regarding a drug that is making miraculous claims with no clinical proof. Like everyone else here I can only hope and pray these claims are true.

    In all this confusion attacks were made on ALS Worldwide who have nothing to do with rch4 other than making a mistake about the inquiry to them about this drug. ALS Worldwide founder is not my ‘friend’ as you state. If they want to defend themselves against these attacks that is on them to do or not to do. If they do decide to share a statement in regards to the accusations via email I will share their response to those interested on this thread.

    As I said repeatedly I wish you, and all those taking this drug continued success, and for those that want to try I sincerely hope they will be given the access needed to do so.

    End of this discussion for me.

    All the best to you
    CC
    .

Tags for this Thread

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •