ALS ADVOCACY

ALS ADVOCACY
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Friday, October 18, 2013

Paging Dr. Google, Paging Dr. Google

If you are new to ALS and searching for a treatment or a cure or simply hope, here's a tip.

When using Google, be sure to try

  • Search Tools
  • Any Time
  • And change the time frame to some years in the 1980s or 1990s or 2000s.
That won't be a pleasant experience, but it will help you sort out what's new versus what has been around and tried for decades.  It will help you sort out the revisionist history that you may hear from people or organizations.

We all wish you well in your search.  There are certainly things worth trying, but please go in with eyes wide open that some concepts have been around since Lou and Eleanor and that some so-called experts have been tossing those "exciting" and "promising" and "breakthrough" words out for decades.

And if you try something, even something simple, be sure to leave a trail of your experiment at a public place like www.patientslikeme.com so that others may benefit.  Let the data speak.  As you have probably found by now, people with ALS hear far too many anecdotal reports and not enough data.

Prayers for all fighting this beast.  


No comments:

Post a Comment