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
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: firstname.lastname@example.org
This raises a number of red flags and identifies it as a likely scam:
- There’s no identification of the “scientists” behind this
- There are no links to publications about the protein
- There are no links to publications about this new drug.
- The website is cheap, poorly-designed, and unprofessional.
- The website is registered to an individual in Great Britain with an obscured contact email address.
- 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.