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.

Sunday, July 9, 2023

"Never Wrestle With A Pig"

At the risk of giving some recent nonsense any more oxygen, I think it's important to document a few things.

I try to live by the "never wrestle with a pig because you both get dirty and the pig likes it" rule.

For years we in ALS Land have disagreed about things.  That's fine because we've not exactly been successful at delivering therapies and great care for people with ALS.  We certainly need to challenge the status quo and each other.

We also need to be realistic that there are well-intentioned people who want to help.  They don't have time to dig into the weeds and often they are just looking for talking points that they trust and that make sense to them.

There are others who like to get into the weeds and discussion of public policy and regulatory science. The More Than Our Stories (MTOS) was a conference designed for them.

A few days before MTOS in February, I was contacted by a New Yorker writer who was working on a possible story and asked if he could attend.  We had room and plenty of food, so we welcomed him. 

In the following months many of us were interviewed by that writer. I had no idea what directions the story might take (or if it might be published at all). but I found him to ask interesting questions and to absorb a lot about ALS.

The long story was published a couple of weeks ago.

Within hours, nasty personal emails hit my inbox.  Mind you. it takes a long time to read this article and it took several readings for me to catch the many sides to issues that were covered. Some folks were clearly Evelyn Wood graduates or did not read the story all that carefully, and they took offense at one of my comments related to NurOwn. The emails were personal attacks. They had similar structures and there were even some remarkably coincidental, vile attacks on my religion.

I have a corollary to the pig-wrestling rule that is seldom needed. Once someone sends me an offensive email, anything further from that email address goes straight to spam.  That should have been the end of the story, but it wasn't.

There were many things in that New Yorker piece that could have upset people a lot more than the few NurOwn comments. but there's nothing quite like the flame-fanning capabilities of some who are singularly fixated on NurOwn approval with no room for discussion.  God help you if you challenge data or the company's tactics that have put people with ALS and the company itself in a difficult situation.  No discussion.  No questions.  If you ask questions, the social media tools are pulled out to block you and silence you.  And if you have a decent following of your own, more menacing personal attacks follow.

People who actually know me know that I work hard and read a lot and try to push the fight against ALS in some new directions. I try to ask good questions and the answers aren't always black and white. I'm not one to be a sheep and I do get into the weeds to try to understand things and find creative change.  I respect science and scientists and regulators.  And I will not be bullied into silence.

“When people show you who they are, believe them the first time."  Thank you, Maya Angelou.

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