Nighthawk
Senior member
- Joined
- Jan 17, 2013
- Messages
- 833
- Reason
- PALS
- Diagnosis
- 12/2011
- Country
- US
- State
- Maryland
- City
- Anne Arundel Co
The ALSUntangled presentation was a mockery. X-Files? Mulder? Samantha?
Comparing ALS patients' hopes to believing in UFO's?
Why there was a picture of a UFO on the slide?
PALS and CALS are not into make-believe and science fiction.
We realize a treatment might not work, might be limited, or whatever but, we want things trialled! That is the bottom line here.
Talk to me like I'm an intelligent person interested in your professional opinion. Don't show me slides on X-Files because you are insulting my intelligence.
That just shows the mindset of ALSUntangled.
Their job is to objectively review the evidence for and against a treatment and let us be the judge for ourselves on how to proceed.
I get the idea of injecting light humor into a serious situation. But this was being watched by PALS and CALS for Christ's sake.
It was condescending, elitist, arrogant, and the brand of humor was completely unwelcome and uncalled for.
They definitely need a new spokesperson.
And we PALS and CALS deserve an apology.
Comparing ALS patients' hopes to believing in UFO's?
Why there was a picture of a UFO on the slide?
PALS and CALS are not into make-believe and science fiction.
We realize a treatment might not work, might be limited, or whatever but, we want things trialled! That is the bottom line here.
Talk to me like I'm an intelligent person interested in your professional opinion. Don't show me slides on X-Files because you are insulting my intelligence.
That just shows the mindset of ALSUntangled.
Their job is to objectively review the evidence for and against a treatment and let us be the judge for ourselves on how to proceed.
I get the idea of injecting light humor into a serious situation. But this was being watched by PALS and CALS for Christ's sake.
It was condescending, elitist, arrogant, and the brand of humor was completely unwelcome and uncalled for.
They definitely need a new spokesperson.
And we PALS and CALS deserve an apology.
