Page 8 of 41 FirstFirst ... 67891018 ... LastLast
Results 71 to 80 of 401

Thread: Rch4

  1. #71
    Forum Member Dude's Avatar
    Join Date
    May 2015
    Location
    Merseyside
    Posts
    2,611
    They make no claims at all. They just disrespect all other things that folks rely on to give them their own positive mental attitude. RCH4 is not a silver bullet, but a negative one. Dude.

  2. #72
    Forum Member
    Join Date
    Sep 2012
    Location
    USA
    Posts
    3,409
    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: 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.
    .

  3. #73
    Forum Member
    Join Date
    Sep 2017
    Location
    walton-on-Thames
    Posts
    116
    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

  4. #74
    Forum Member
    Join Date
    Sep 2017
    Location
    walton-on-Thames
    Posts
    116
    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

  5. #75
    Forum Member Dude's Avatar
    Join Date
    May 2015
    Location
    Merseyside
    Posts
    2,611
    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

  6. #76
    Forum Member
    Join Date
    Sep 2017
    Location
    walton-on-Thames
    Posts
    116
    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

  7. #77
    Forum Member Dude's Avatar
    Join Date
    May 2015
    Location
    Merseyside
    Posts
    2,611
    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

  8. #78
    Forum Member
    Join Date
    Dec 2013
    Location
    Surrey
    Posts
    422
    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

  9. #79
    Forum Member
    Join Date
    Sep 2012
    Location
    USA
    Posts
    3,409
    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
    .

  10. #80
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Posts
    3,642
    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.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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
  •