ALSA Dietary Recommendations Questioned in Open Letter

By Craig Oster, PhD (AKA, Dr Craig)

9.1.2014

Dear ALSA Communications Director,

I am writing you as a 20 year survivor of ALS, who is also a peer reviewed published ALS research scientist and a member of the respected ALS Untangled international scientific review team. I am publishing this as an open letter to share with the public, because the ALS Association (ALSA) has publicly stated its value of transparency and because the ALSA promised answers to my scientifically oriented questions have not been given; this is within the context of my repeatedly reaching out to ALSA over the course of over several years to one VP, and to her successor.

My email message replying to the current VP of Patient Services requested a conference call with my esteemed scientific associates, and requested that she answers my follow up questions to the ALSA answers for my investigative news story several years ago. When the previous VP submitted to me the answers that the ALSA team provided, she said that ALSA would be happy to answer any follow up questions that I had about the ALSA team’s answers.

I don’t understand why the promise has not been kept, to answer the scientifically-oriented questions of a long term ALS survivor/scientist. ALSA markets itself as driven by science and frequently promotes how it listens to remarkable ALS patients. Yet, for several years ALSA has not kept its promise to answer my scientifically oriented questions. Again, I am a 20 year ALS survivor, and I am respected enough to be involved in ALS research at Harvard University and the University of Brasilia, as well as to have a number of world renowned scientists volunteer their time to be my scientific advisors. Some are not even listed on my THE HEALERS campaign website.

Given that a significant portion of your money funded by the public goes to patient education, which includes nutritional recommendations, I believe that people across the country will be as puzzled as I am, regarding why these important questions are being ignored. I also imagine that the public, like myself, will be puzzled as to why ALSA is not interested in taking 2-3 hours to have a free conference call with myself and five or more renowned scientific advisors, with expertise in nutritional biochemistry science, to discuss our scientifically-oriented reasons for believing that some of ALSA dietary recommendations are contrary to nutritional biochemistry science in relationship to what science has established regarding the physiology of ALS.

This is a very complex area, deserving serious discussion. There are no peer reviewed scientific research studies evaluating ALS patients who follow the ALS Association’s recommendation that people with ALS who desire to gain weight consume twice daily shakes, including sugary Ensure, ice cream, chocolate syrup, and Oreo cookies, in comparison with ALS patients, like me a 20 year survivor, who eat to gain weight based upon what nutritional biochemistry science has demonstrated to be good for mitochondrial health; yet, there is no scientific evidence to justify making the junk food recommendations to ALS patients. Such recommendations also have implied possible psychological meanings to people with ALS, one of which is, “Why bother eating as healthy as possible, because you likely only have a few years to live” (I have data from 83 patients with ALS that I and my scientific associate intend to publish in this area). I have delineated some of my reasoning in the follow up questions that one of your VPs said they would answer, and I have also submitted the follow up questions to the VP that replaced her, to no avail.

I believe that ALS families and patients around the world who fund ALSA, deserve answers to the scientifically-oriented questions I am asking regarding ALSA dietary recommendations. I also believe that people with ALS would benefit from ALSA having a free conference call with myself and my scientific advisors, including scientists from Harvard Medical School and Boston University, and the scientist who led the scientific research team to co-discover Lipitor who now is interested in using his expertise as a nutritional biochemist to help me help people with ALS have a better standard of care.

We intend to conduct scientific research when funding is available, yet we believe that if you meet with this group and listen to our reasoning that you will see that there are science based reasons to make different nutritional recommendations that will likely benefit people with ALS now. In my letter to your current VP of Patient Services, I explained that one of my associates who would be on the proposed call is a Registered Dietitian who had a leadership role at Beth Israel Hospital ALS clinic and whose clinical experience has demonstrated that ALS patients always do better when they switch from sugary processed formulas to a whole food nutrient-dense formula. I would hope that ALSA would be interested in learning about this.

Given what is scientifically known about ALS in terms of compromised mitochondrial functioning and how much of a concern inflammation is for ALS progression, the above clinician’s experience is not surprising to my scientific associates and myself. I reaffirm my invitation for a scientific discussion meeting, private or public, on the phone or in person at Michigan State University. One of my advisors is the Director of Curriculum at the Michigan State University College of Osteopathic Medicine, so there may even be the possibility of asking the medical school to sponsor a summit with both of our organizations.

If you are not interested in having any type of meeting, please inform me and we will launch a national public education campaign to present our scientific reasoning to benefit people with ALS around the world. My training as a clinical psychologist also makes me aware of possible detrimental psychological consequences of recommending junk foods as you do, and I and my psychologist research associate from Catholic University of Milan, Italy, could touch upon that during our meeting.

I am asking the public if they are interested in #THEHEALERSALSAsummit, and to let both of our organizations know through social media what they would like (Dr Craig Facebook Page; ALS Association Facebook Page). I am reaching out to you in the hopes that we could work together for a common goal, with scientific reasoning, to help people with ALS around the world. We are volunteering our time to help ALSA, and you will not be required to use any of the money that the public has donated to ALSA. 

Gratefully,

Dr Craig

Craig Oster, PhD

20-year survivor of ALS (Lou Gehrig’s disease) &

Co-founder/Scientist/Advocate at THE HEALERS campaign