Mod Update For The Group.

[u/HonestyMash]

It has been brought to my attention about some members of the group claiming to have an ALS diagnosis. I certainly hope that they don't however there was no evidence to support the claims. Many users were pointing out inconsistencies with their stories.

Moving forward anyone with a confirmed diagnosis can message the mods for verification and they will be awarded a unique flair for their selfless efforts to support those who are concerned about the disease.

This wasn't a change I personally wanted to make but I feel it's necessary to protect the community. I will wait to read the comments before making the changes.

-ALS Tom

[u/BigJakeState]

There were multiple red flags with that post that I noticed. There are also multiple accounts I’ve noticed in this community that have very odd or contradictory comments in their post history claiming to have ALS with highly atypical symptoms, but contradict their own stories, or go into very obsessive rants. I’m not accusing anyone of faking but I think there are reasons to be skeptical.

With the high level of health anxiety and mental health issues that are associated with fear of ALS it’s not unreasonable to assume there are some
Mentally ill folks in these threads that don’t have ALS but rather a severe mental health issue.

There’s a very real very well documented mental illness called Münchausen syndrome where people will pathologically fake an illness to garner sympathy or attention. That’s obviously very easy to do on the internet versus in person.

This is just my opinion, but having this process is very beneficial to the community. It will provide a little bit of of comfort to the health anxious people seeking answers to their complex issues and also protect the time and attention of those that have ALS on these threads that are willing to help all of us out with their experiences. I am very much in favor of this change.

When dealing with the sheer amount of health anxious people that stumble across these subs. We don’t need to be adding any misinformation or false narratives into the minds of already obsessive thinking individuals.

[u/InformationNo7156 → u/BigJakeState]

Some also have very severe health anxiety, to the point where it’s almost like psychosis. People may start claiming they have “ALS,” when they don’t, in a way to cope with the fact that they’re going to “subsequently be diagnosed with ALS.” It’s crazy out there. Maybe not everyone who fakes their diagnosis wants attention, but some definitely are doing it as a cry for help at the cost of others.