October 3, 2015
Letter to ALS Society
"President and Executive Director, ALS Association & Chairman, Scientific Advisory Committee
It is now almost 100 days since I last wrote you bringing your attention to the www.liverbraintheory.com now published online since late May 2015.
This theory has been downloaded more than 2,000 times in nearly every developed country in the world. Yet you have both elected to keep every family and patient uninformed about single most comprehensive theory ever published concerning a possible causes of ALS.
As you may recall, I made an extremely heretical proposal in my initial letter to you. I predicted that a liver transplant might well arrest the progressive muscle wasting characteristic of ALS. This muscle wasting inevitably leads to certain death due to the patient’s inability to breathe and swallow. The time period from diagnosis to death in ALS patients is less than 48 months in more than 85-90 % of afflicted patients.
Lou Gehrig, as Captain of the New York Yankees, the single best recognized individual and most prominent patient ever to be afflicted with ALS, died 25 months to the day, he took himself out of the starting lineup of the New York Yankees for the “good of the team”. He had previously played in 2,130 consecutive baseball games.
I have already posted my initial letter to you in the “correspondence section” (Section 8) of this theory, as I will do this with this letter. I further indicated that neither of you acknowledged receipt of my letter to you nor were you willing to attempt to post it on your website.
Moreover you have chosen not to develop a competing or different theory of your own. Surely with your multi millions dollars of cash on hand you would have no difficulty hiring someone willing to prove this theory to be categorically implausible and in error.
In my opinion it is only a matter of months, before a young man of Lou Gehrig’s approximate age (35), when advised he has a more than 90% probability of dying before he reaches 40 and informed of the existence of the liverbraintheory might well elect to have a liver transplant or at a minimum evaluate the effect of repetitive plasmapheresis on arresting the rate of his progressive muscle loss and possibly extending his life.
I trust every one of you in an executive position in ALS Association will have the courage to resign and issue a public apology to the families of those who succumbed from the ravages of this ALS, without ever having been informed they might have lived following a successful liver transplant if the basic premise of liverbraintheory proves to be correct, as I believe it will.
If you were sincerely interested in seeking a better understanding of ALS you would have already made this theory public and announced that you would pay all expenses attributable to a liver transplant and complete post operative follow up care for the initial 4-6 patients volunteering for this operation.
You might even have made the public aware again that it will soon be 191 years since ALS was recognized to be a completely untreatable and inevitably fatal disease.
Charles R. Sachatello MD FACS"
Author’s comments: (In lieu of non-response from ALS Society)
Let me repeat:
The author is fully prepared to face the ignominy and ridicule certain to be aimed his way if this theory is proved to be in error. Similarly he is well aware that many will openly question his sanity.
It is much easier to deride the errors and failures of others, than to develop relevant competing ideas of one's own.
It is only 50-60 years ago that the diagnosis of childhood leukemia meant certain death for 100% these children. Physician-scientist of the day had the temerity to inject known poisons into children attempting to kill leukemia cells.
A half century later many of these children, are alive and doing well as young or middle age adults. When faced with a patient with an inevitably fatal disease, treating physicians have an obligation to try newer and possibly more effective treatments.
More than 80% of children with leukemia today survive intense courses of chemotherapy. These children are alive today because of the courage of their physicians and the willingness of their grieving patents to try other new promising drugs.
With the present hopeless attitude of physicians attempting to care for patients with ALS, it is easy to understand why more patients with ALS commit suicide than any other disease. In some Scandinavian countries patients with ALS commit suicide six times more frequently than with any other disease. (10)
Surely it is time to try something new or prove that the suggestion that a liver transplant might well arrest the progressive muscle weakness is categorically implausible or at a minimum evaluate the effect of repetitive plasmapheresis on arresting the rate of his progressive muscle loss and possibly extending the life of an ALS afflicted patient.
10/25/2015, slightly revised--- 11/26/2017