So apparently this is indeed not something new… While looking up the domain information for our friendly RCH4 website (which expired yesterday, July 5, 2016) to see if it would be updated, I stumbled across an older version (2011) of the site from the same person. This time he called himself “Michael Curram” of “Rixbiotech”. The address is exactly the same as “Michael Richards” who put up the RCH4 website, and the contact email given on this older website is the same – “firstname.lastname@example.org”.
You can see the front page of the older website which was named “als-amyotrophic-lateral-sclerosis-a-new-drug.com” (history provided by Web Archive’s Internet Wayback Machine). Unfortunately none of the other pages were picked up from the site. But the substance described by this site is different from that of RCH4, apparently being some kind of way to correct a suspected autoimmune disorder that would be applicable to a variety of conditions.
The language sounds suspiciously like that of the substance “TDI-846” which was developed by the ALS Therapy Development Institute and successfully treated the SOD1G93A mice. It’s an antibody specifically for rodents and is available on the market for testing purposes only – NOT for human consumption. ALSTDI has more recently developed a human version which they are putting into human trials, but whatever this website was promoting isn’t it. The website promoting RCH4 made it sound to me like a knock-off of GM6, the peptide manufactured by Genervon. Michael Curram/Richards might well be trying to create a treatment for ALS, but he is clearly an amateur and is not going about it the right way. This makes me extremely wary and I urge all PALS to stay far away from anything this guy is promoting.
Domain information is:
Domain Name: ALS-AMYOTROPIC-LATERAL-SCLEROSIS-A-NEW-DRUG.COM
Updated Date: 2013-11-29 12:27:20
Creation Date: 2008-12-29 17:12:46
Registrar Registration Expiration Date: 2014-12-29 17:12:46
Registry Registrant ID:
Registrant Name: Michael Curram
Registrant Organization: Rixbiotech
Registrant Street: 56 Amanda Close
Registrant City: Chigwell
Registrant State/Province: Essex
Registrant Postal Code: IG7 5JG
Registrant Country: GB
Last night (at time of writing) I was treated to a personal guided tour of the Steve Saling ALS Residence in Chelsea, MA. My tour guide, via laptop webcam, was my friend Lisa Jones-Wyhlidko, the dynamo who does such excellent volunteer work for ALS Guardian Angels. She dialed me up using Google Hangout (up to 9 people in a group teleconference – a really wonderful free tool!) and said she was going to walk me around and show off the Residence.
I was amazed right off the line. The attention to detail giving the place the feel of a regular residential condominium was exquisite. Except for someone coming down the hall in a wheelchair you would never suspect this wasn’t a condo full of young professionals. The common area was the first hint of difference with tables built high enough to roll wheelchairs under. The professional kitchen made me drool. Tucked into the soft and comfortable construction were cleverly concealed safety features such as fire doors which seal off the kitchen in case of accident.
Next up was the first floor with the kosher New York style deli (complete with molded tin ceiling) and bakery. The bakery had a nice outdoor patio for use in the fair seasons. Around here I was introduced to some staff who were a little surprised to be talking to a head in a chat window at 3:30 in the morning. They were absolutely pleasant and friendly and further surprised I was on the West Coast. I love technology.
Next was the hair/nail salon and spa with jacuzzi style tub. You read that right – hair/nail salon with jacuzzi tub! PALS have a right to a hair-fluff and mani-pedi just like everybody else! The salon was pretty standard except perhaps for shampoo bowls being a little higher. The spa had vertical overhead track lifts and the tub tilted up to ease the PALS in, with contours for head and neck support.
This entire tour was done without break with a laptop using standard WiFi connection. The entire building is saturated with WiFi connection, even the outside patios and lawns (which have substructure below the sod to ensure a wheelchair doesn’t get stuck in a bog). Going up and down in elevators was seamless. This is so PALS in power chairs can call elevators and open doors for maximum independence. The PEAC system integrated into the network allows doors and other utilities to be operated by a PALS with an eyegaze system.
Simply put, this place is awesome! Readers who know me know that I despise the over-use of that word in contemporary vernacular, so you know I really mean it. Steve Saling had magnificent vision, and the Chelsea Jewish Foundation was bold and progressive in working with Steve to realize his vision in building the Steve Saling ALS Residence into the Leonard Florence Center for Living. I am proud to support the ALS Residence Initiative and hope to see at least one in every state in the country. Thank you Steve for having vision and the skill and determination to see it realized!
Technology is extraordinary. The level of communication made possible today by technology is unprecedented. This ability is also available for people with extreme disability (I wrote this purely with eye movement to distribute to the world…).
Part of the explosion of communication technology is the invention of social media. This especially has allowed people like myself who were previously called “shut-ins” to virtually travel around the world and socialize. The benefit has already helped PALS.
Tonight the social media giant Facebook helped save the life of another PALS. I was watching TV with my caretaker when a PALS messaged me on Facebook saying her caretaker wasn’t answering her alarm and asking me to call her house phone to alert the caretaker. I could have called using my web-based Google Phone but asked my caretaker to use my house phone to call. We were one of a few others calling, but in the end the caretaker was alerted and the PALS’ needs were met.
I was recently alerted to a blog called Science-Based Medicine which had a post that was rather critical of me. The post was written by David Gorski, a managing editor of Science-Based Medicine. If you read the post, you can probably understand why I took a little umbrage to Dr. Gorski’s characterization of my efforts. Below is my response to him, shared here for my readers’ convenience.
“I find your attempts to discredit me by dissembling most curious for a chap claiming to champion honest science. First of all, the multiple conflations between NP001, my personal project, and MMS are deliberately misleading. The only relationship between the three is that they contain some amount of sodium chlorite. MMS is a rather high concentration that is broken down to chlorine dioxide by the citric acid with which it is mixed. NP001 is a very low concentration of sodium chlorite delivered intravenously. My oral delivery is the same concentration as NP001, with at best about 30% delivery of NaClO2 to the blood after gut passage (according to FDA publications on animal exposure). My project (https://sites.google.com/site/alschlorite/) was intended more as an open-label experiment for people who didn’t qualify for the Phase 2 trial and in the absence of an Expanded Access Program (which some of us are working on for during the Phase 3).
NP001 and its cousin WF10 have excellent safety and tolerability in multiple studies and the case for sodium chlorite having the desired immune modulation is extensively covered in PubMed despite your claims to the contrary (please see http://www.ericvalor.org/?p=86 for an easy guide through a few of the publications by Dr. Michael McGrath, the inventor). And despite your casting doubt as to the integrity of Neuraltus by pointing at a lack of publication in PubMed, the record on clinicaltrials.gov clearly shows that Neuraltus has satisfied thus far all FDA requirements to move forward in the regulatory process for NP001 and another candidate drug (http://www.clinicaltrials.gov/ct2/results?term=neuraltus). Further, I trust the results published on Patients Like Me done by my friend known online as Persevering (http://www.ericvalor.org/?p=42). We have good reason to believe that our correlation between side-effects and live drug is accurate. I won’t reveal that right now because NP001 still has trials to go and I don’t want to pollute the subject pool.
I didn’t just guess about NP001 and run to buy a bottle of MMS like you insinuate here. I did a careful review of literature by Dr. McGrath, including email with Dr. McGrath himself. I had other sources of information which explicitly stated that sodium chlorite indeed was the active ingredient in NP001. I then worked with a chemist with years of experience using sodium chlorite in the water purification industry to examine feasability and safety. Congratulations on your own discovery, but you could have emailed me for documentation (I am quite easy to Google).
The lithium project (in which I participated) was not a collection of anecdotes but rather a self-reported trial using the standard measuring tool of the time – the ALS Functional Rating Scale or ALSFSR. This is the same questionnaire used in neurological clinics. Karen Felzer did a fantastic job analyzing the data. Unfortunately the data showed futility, like the official trials that followed ours.
The lithium project (http://alslithium.atspace.com) was organized because all other ALS organizations expressed no interest in testing the fantastic report making headlines. We patients therefore took it upon ourselves to make an initial, admittedly unofficial, trial to test the report. We knew that the results would not be as reliable as a real clinical trial, but our results would be enough to carry on further to a real clinical trial if the findings in the study paper were real. Shamed by our effort, other organizations hastily constructed trials which proved our findings. Even years later, organizations were burning precious money doing real trials when they could have looked at our results and not wasted precious time which could have been spent on other studies.
My reports are not a figment of my imagination as you suggest. Go to my site listed above and look at the video evidence I have posted. My doctors have also physically seen the improvements, much to their surprise. Although I don’t make ANY claim of definitive evidence, I do take my effort quite seriously and soberly.
The real story here, which you ignore or dismiss, is patient empowerment. For too long have we been isolated and told to just wait to die. We can use technology now to organize and, more importantly, mobilize. We now can and will take action to promote OUR agenda, not the feeble selfish agenda of certain advocacy organizations which do very little beside provide employment for their directors.
We are trained in highly-skilled technology trades. We might not be doctors, but we are engineers trained to research and resolve highly complex problems. We are capable of learning and comprehending complicated concepts. We understand the limits of our abilities and, further, that without our efforts the pace of the fight against disease is much too slow for people living today. And we have no delusion that anything we are doing is intended to replace clinical trials. Rather we intend to augment and push forward the actual science.
I will let Jamie Heywood respond further on behalf of PLM.
– Eric N. Valor”
Holy dancing cow! Today I was playing with my Google account and finally set up a G-Mail account. I then noticed a “Call Phone” link that connected me to Google Voice. While this isn’t new by any means, since it was free for USA domestic and Canada, I decided to install the web browser add-on. Within a few minutes I was placing phone calls to friends.
Imagine their surprise…
The default setup comes across as “CLIENT_ONLY” which might be ignored by people with Caller-ID (most of my calls went to voicemail at first). So a few more minutes later I had “upgraded” my Google Voice account with a brand new mobile phone number in my desired area-code and linked it to my house land-line so people can call me if I am offline. Calls to my Google Voice number which go to voicemail are placed in an inbox I can access via my Google Voice or email.
The voice quality on both ends was reported to be quite good. Calls were very easy for me to make. I cued up my opening lines so that as soon as the remote end answered I could hit “Speak” on my assisted communication device and identify myself. I had originally intended to use this in emergencies if I couldn’t otherwise alert a caregiver (note that this is NOT suitable for dialing 9-1-1) but after my test calls went so well I decided that I have a “new” communication method for talking to my more patient friends. I had used Skype in the past, but Skype is only free for computer-to-computer calls, not to regular cell or land-line phones.
I was able to do all of this with my eye-tracking system with relative ease. If you have control over your eye-tracking assisted communication device and can install software, I recommend trying this out to see if it works for you.
UPDATE: Configuration instructions are in the Comments section.