People with ALS try things. It's a fact. Some things are pretty innocuous and other things are more complicated.
Families rely a lot on Dr. Google to find things to try. They search. They try to sort thought it all. They are fighting a terribly fast clock. The information they seek is in stunning disarray.
The information gaps have us blindly trying the same things over and over.
We need to capture information. We need to let the data speak. PALS need to be encouraged to self-report their information in a public and organized and searchable manner.
PALS and CALS are vulnerable to hucksters, and often on the day of diagnosis they are warned of
predators who will want to replace their fillings or shoot some fat cells into them. And new PALS and CALS are often frightened by their clinic staffs and ALS organizations on the perils of the internet.
This is so wrong. It is so wasteful. Instead why don't we encourage some productive use of the internet (beyond the miracle of fundraising)?
Let the data speak. If everyone who had fillings popped out self-reported on results, it would give PALS information for more intelligent choices. If everyone who tried Vitamin E self-reported on results, it would let PALS make more informed decisions.
Please, let the data speak.
Ironically, www.alsuntangled.com has been using self-reported data at www.patientslikeme.com where the data contributions from PALS seem to have dropped off severely in recent years. The ALS establishment needs to encourage the self-reporting rather than frightening PALS away!
People with privacy concerns can be as obscure in their personal identities as they want. A right-handed ballerina can call herself "Lefty" and post her data at patientslikeme. I cite that website simply because it has a good data presentment dashboard for those with ALS.
The information waste we are experiencing today is insane. It is wrong. Self-reported data are not perfect, but with a fatal mystery disease with no good treatment options, the imperfect data are valuable. To bury clues with PALS is just madness.
And perhaps it's time for all involved in the fight against ALS to ask PALS why they aren't self-reporting data today.
Let the data speak. Let PALS make more informed decisions. Give scientists a clue, too. Please. Information is a terrible thing to waste.