I need to rant.
Maybe it's because I'm in a really bizarro mood today. But the need to sputter about a thing that I won't be able to change most likely arises from irritation after reading the results of several Sjogrens studies over the past few days.
None of these studies are new ones, so I don't have anything exciting to report. Which is rather disappointing. But because I have seen them before, on second reading of several studies in a row, something stands out to me that I hadn't noticed before.
While I have no hard data to support this, it appears to me that the vast majority of study authors (and yes, I know that there are some that haven't) choose to research things like eyes and tears and saliva production and autoimmune antibodies in the study of Sjogren's Syndrome because THEY ARE MEASURABLE; not because they're the most important to Sjogren's patients. I've told anyone who would listen repeatedly and usually at the top of my lungs: Yes. I have significant dry eyes and dry mouth but those symptoms pale when compared to the life-altering bone-crushing disability-inducing fatigue and the resulting depression and anxiety that follows. I am not alone in feeling this way.
I continue to regularly receive letters from newly diagnosed Sjs patients who are terrified at the severity of their fatigue; wondering how this will impact their life in general, as well as their ability to be parents, employees, and family members. They write to me because they don't get information and guidance from their medical caregivers, and when searching online for information on fatigue find very few reputable sources which only contain vague information. Because there just aren't enough studies which provide useful data that could lead to treatment. So when trying to answer these letters, I too can only provide vague information and can't answer any of their very valid why, WHY, WHY?!!! questions. In my personal experience with this difficult disease I'd like some hard and fast answers to these questions too.
I want to grab study authors and and unsympathetic rheumatologists by their white lapels and shake them until their teeth rattle. People. I know that the research tools which objectively measure fatigue and depression and anxiety are elusive, and I understand that at this point in time there are very few treatments that offer real and lasting relief of autoimmune related fatigue. The realities of those two difficulties are what makes them more important to study and discuss, not less.
Since when has science been flummoxed by tackling something hard?
We need a Sjogren's version of the Wright brothers here.
Saturday, December 17, 2016
I need to rant.