Just thought I would pass along a few thoughts on our frustrations trying to sift through information available online about this disease and my tips and tricks for sniffing out better articles from worse articles-- or just plain junk.  Here's a great example of some really bad science writing from Wikipedia:

"In some cases though the disease is mild and may only need aspirin as a treatment and may go into remission where no Anti-U1-RNP antibodies are detected, but that is rare or within 30% of cases.^{[citation needed]"}

^{This sentence is so badly written it's impossible to tell what it is saying.  Does it mean that it defines remission as being "where no anti-RNP antibodies are detected"?  If so, that's idiotic.  Plenty of people have anti-RNP antibodies and few or no symptoms!  Or does it mean that if you have no anti-RNP antibodies, you may go into remission from symptoms?  There's no way to know.}  

^{What is meant by "Rare or within 30% of cases"?  30% of anything is not "rare," that's pretty common!  So it seems like they're saying, "going into remission is either unusual, or not unusual."}  

Then there's the "[Citation Needed]" note, which does not inspire confidence.  I mean, really?  Did someone just make this up, or did they figure they didn't need a citation because no one could figure out what they were saying anyway?

The message of this article is like, "Well, in 30% of the cases, it's worse than lupus-- and we're not going to tell you what we mean by that, higher titre of antibodies than lupus, worse symptoms, poor quality of life or early mortality... maybe it's some of those, maybe it's all, but we're too lazy to read that far, think that hard, or let you know.  It's always progressive, but there's a chance you could go into remission, that's either likely or unlikely."  

This is why Wikipedia is NOT considered a source for academic purposes.

^{Okay, now let's look at something that's well written and recent and from a peer-reviewed source from 2013:}

^{https://www.ncbi.nlm.nih.gov/pubmed/23637328}

^{A total of 22 of 280 patients died: the causes of death were pulmonary arterial hypertension (PAH) in 9 patients, thrombotic thrombocytopenic purpura in 3, infections in 3, and cardiovascular events in 7.} 

^{Okay, see the difference?  You can actually read this sentence and you know exactly what it's saying.  To me, that says, "I'm liking this source, at least at first glance."  That's 22 of 280 patients dying in around 15 years or so (if you read a little further.)  This is LESS than 10%, folks.  And some of those folks could have been diagnosed at 70 years old, I haven't read the study yet.  Not too bad, huh?}

^{There are some other cool articles from NCBI.  Generally, they say that Pulmonary Arterial hypertension is definitely correlated with the worst outcomes, though having antiphospholipid syndrome (which I have by the European criteria, but not by the US... or something) is also not so great.  Some of these articles also think that certain symptoms need to be checked for regularly and can change the course of treatment... man, I wish I could get to that one.  Other articles suggest that pulmonary hypertension usually shows up late in the course of the illness, and rarely early on.  Hit the link above, and then click on some of the ones in the box on the right.}

^{I'm just a psychotherapist, not a doctor, so I'm not subscribed to the research portal that would get me past the abstracts.  At some point, maybe I'll pay the $30 bucks or whatever for the ones I want the most.}

^{Hope that's helpful... and hopeful!}