Monday, July 30, 2012

Response-able

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://friends4eric.blogspot.com/2010/08/salty-dog.html 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://friends4eric.blogspot.com/2012/01/guest-persevering-on-np001.html). 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"

1 comment:

  1. I found your response to the SBM article be excellent and well written.

    I was disappointed that Dr. Gorski did not address the detailed clinical methodology of the OSC DIY clinical trial that you explained with links, nor the fact that the ALS-FRS used by patient-driven clinical trials is the same/similar as those used by neurologists.

    Most of all, I was disappointed that he did not address the very important topic of patient empowerment that you raised.

    Perhaps the article would have been even more interesting if it was written by a neurologist instead of an oncologist, like Dr. Steven Novella, who also writes for SBM.

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