h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

Entry: *duck ransom* Systemic lupus erythematosus (SLE) - A952229
Author: 2legs.Seagull not busDriver.Find me on the corner of your mind.nighthoover highpriest.official BreastInspector.Gherkin.Meethead. - U169793

There was nothing in the guide on this disease, and ahving studied it at University, I have been thinking for a long time of doing an entry on it.
As can be seen in the title, I was forced into action by the ducknapping at the Winter 2003 London me, and would like to offer this entry in an attempt to help free the duck.

The article isn't exhaustive on the subject, but provides a good overview of the disease, with a reasonable amount of detail, I could have added more but was worried about its length.

Estelle Morris has Lupus...which some newspapers report and others don't...they all like to report how uncomfortable she looks in press conferences and parliament though - even though this is because she feels the cold much more than most people because of the lupus...it's like the press reporting that david blunkett was staring into space during a press conference....they know why he does it same as they know about estelle morriss

*wanders off muttering about newspapers*

Sorry.... I never* knew that about Estelle... Probably because I, like blunkett spare a lot of time staring into the dark : Is the Formatting of the entry alright?

Looks ok...I wonder about using bullet points for the symptoms/lists etc to make the separate points more separate

Yeah, that might work.... (I'm now going to look and find out how to do the bullet list, I've only ever used hte guide ML for the non bulleted lists ) I'll give it a bash later, or tomorrow I'f I'v not time tody

Hmm, interesting typo, toby=today

Some thoughts and suggestions. I think this has the potential to be a good entry, but I also think it needs a decent amount of work.

It would be useful to include the diagnostic criteria for SLE, and the 4 out of 11 rule.

The entry is titled SLE, yet you get into some of the other types of lupus later on. It is worth differentiating at the very beginning what the difference is between SLE, discoid lupus, neonatal lupus, and drug-induced lupus. Frankly, I think it's also worth at least mentioning diagnoses that tend to overlap with SLE -- undifferentiated connective tissue disease, mixed connective tissue disease, "overlap syndrome", etc.

The information on diagnostic testing is a little confusing. What you abbreviate as the FANA test is known as ANA in much of the world. You list the RF test as one of the most commonly used tests for SLE, but don't mention that's it's not actually used to test *for* SLE, but to test to see if the person has RA instead of SLE. Other diagnostic tests beyond the ANA and RF are far more specific for SLE, with the most commonly used probably the anti-DNA test.

In the treatment section, the head about treatment for kidney disease is a bit misleading -- those meds are used for organ involvement in general, not just for kidney disease.

I think the entry could also benefit from some informative links. WebMD has some good SLE info, as does the Lupus Foundation of America, and the Arthritis Foundation.

Just my 2 cents.

Mikey

Sorry... I'd almost forgotten about this; I'll get on tuit it Monday, after the Mini unoffical H2G2, London meet

It's quite comprehensive, so well done there, but as a putative lupus sufferer myself, I would prefer to see an explanation of some of the technical terminology. It would also be good if you could get the formatting sorted out so that your line breaks actually work and look good. It may be that you want to use paragraph breaks in places instead, or even a list.

As it is, it is quite dry and quite difficult to read, and I don't find that the information sticks in my head.

You might also point out that the antibody test returns false negatives but not false positives

And yes, I'd agree about pointing out the various different types - the contraceptive pill can induce lupus, after all, but that's not the same thing at all as SLE.

I also feel that while the article is informative it's very inhuman, almost, and I can assure you that enough lupus sufferers spend enough time being handed around apparently unsympathetic doctors being labelled as "hypochondriac", "institutionalised" (that's a great one) or even just "depressed" that a warm, human article would be much appreciated.

Just an idea, though.

Um, the last post had some factually incorrect information.

The contraceptive pill cannot induce lupus. However, it can sometimes make lupus worse in people who already have it -- but that's not the same thing. The drugs that can actually *induce* lupus are mostly antibiotics, anticonvulsants, psychotropics, and whatnot. When people have this kind of drug-induced lupus, the symptoms go away after the medication is stopped (assuming, that is, that the problematic medication is stopped before the autoimmune inflammation does any permanent damage).

The antibody tests can indeed have both false positives and false negatives. For the ANA test, for example, the false positive rate is extremely high -- the vast majority of people with a positive ANA test are completely healthy, and will never develop lupus. It's a test with high sensitivity, but low specificity -- that's why it's used as a screen, and is supposed to be followed up with more specific tests like the anti-DNA antibody test.

A good book for info written in a patient-friendly manner is "The Lupus Book", by Daniel Wallace. It lists drugs that can be involved in drug-induced lupus, and gives the false positive and false negative rates for the various antibody tests.


Mikey

I'll give it my full attention Monday, after I've sobred up... I was worried about the length of the article, as I had a ton o other things I could/would have written, but I didn't want it ending up too long or being split in half, unless I split it into diagnosis, treatment etc, linked to froma page on the pathology etc?

I'm glad somebody with great knowledge of the subject is covering this topic! Loads of good info in there! But. . .

what might help the article is to shorten it?!?!

I know that there are loads of things to say about SLE. There are huge chapters in books and thousands of research articles on the subject, but for h2g2, if you're going to cover all of SLE in one article, making it a little less dense would help the reading of the work quite a bit.

Just a few quick notes:

Organization: I think that you need a clearer opening paragraph. The one you propose will scare anybody without and MD or PhD in immunology. The suggestion to soften the article is great, and one nice way to do it is to use the opening to gently explain SLE in very general terms. To give an idea to peopel who have none, and to lead people into the rest of the article.

Clinical Symptoms might work best as the first section (instead of in the opening paragraph). Then when discussing the rest of trhe disease people will understand what it actually looks and feels like.

Epidemiology - I like this section very much. Factual and brief. You might want to point out that there is no known reason for the epidemiology to be as such. That is being female doesn't CAUSE SLE, it's just an interesting coincidence, but more research is trying to find out WHY.

Content notes:
You mention "IDDM", that term is no longer in favor with endocrinologists, at least in the States. Type I DM is preferred in literature. Although many still use IDDM, but that's a whole
different story. Actually the sentence in which you use the IDDM comparision isn't great. When you say thet SLE is a sytemic disease that effects more than just one organ system, you don't need an example. Everybody should understand systemic, even without an example.

The immune section is too technical and therefore too long. Many peopel will be confused by this or bored by reading the many (well written really!). I hate to say it so bluntly. But that's my opinion.

With all that in mind, i think that with some editing this could be a GREAT article.

You definately know your stuff! The trick now is to turn all the research you've done into something that folks can learn from, enjoy reading and use as a reference, perhaps, for other readings.

I'm running to clinic now, but I'll log on later with some more ideas.

Cheers,
Friar

The immunology section too long? it was a lot longer to start with well, doing a immunology/immunology masters probably accounts for that... I found it difficult tryin to get the balance in the article, and these suggestions are really helping with that... apparently it isn't totally normal* to find immunology totally fasinating, so I guess that is just me... And it is hard looking at something you know a lot about, and trying to think what it was like when you didn't, I.e., what it is like for a reader who hasn't studied much biology, or immunology etc...

I totally understand! I'm finishing my MD right now. In my more science related writing I have to suppress the urge to say too much. Even if I know I can explain the topic without using jargon I have to be careful about how much I say, I tend to go overboard too!

Think of it this way: if you were writing two articles one just on SLE and one on the immunology of SLE. In the first article you would HAVE to mention immunology, but you'd hate to say all that you would say in the second article. So a summary paragraph and then let it rest.

Another way around this would be to put many of the definitions in footnotes, or use words that don't require definitions. That might be really hard to do though. Especially in areas inherently complicated topics.

This idea goes for all writing though. If you were to write a review of a movie and got really bogged down in overly technical details (the scene blocking, the ihstory of the novels that preceded it, the filmography of the Key Grip) then nobody woudl read the whole tihng, because you really want to talk about the movie in general.

BTW, did you like how I just *knew* you were an immunologist?

I can smell you folks a mile off!

Cheers,

Friar

ps. I'll check back on Monday to see how the article looks

>The contraceptive pill cannot induce lupus<

That's odd. The leaflet that came with my last pack of contraceptive pills said that they could. Is this a mistake on the part of the manufacturers? I stopped taking the pill because I hoped that my symptoms would alleviate, as advised in the 'in-pack leaflet'.

It's possible that you might have misread the packet. It's also possible that the packet was worded badly -- the packets are not written to be as understandable to the average lay person as possible -- they are written to be understandable to doctors and pharmacists, and to prevent legal action. Sadly.

What sometimes happens is that people with 'prodromal' or 'subclinical' or simply undiagnosed lupus start taking birth control pills, and the added hormones make their symptoms worse, and then they get diagnosed. But this is not the same thing as drug-induced lupus. In these people, they can stop taking the birth control pills, and their symptoms improve, but the underlying disease is still there because it was there to begin with. However, even this is much less likely to occur with the low-dose oral contraceptives, which is what most doctors will use in a patient if they even suspect something like SLE.

With drug-induced lupus, on the other hand, people can be ANA negative and anti-DNA negative one day, start taking a medication, suddenly develop symptoms and suddenly have their test results be positive. They stop taking the medication, and their test results go back to normal, and the symptoms disappear.

Again, if you want detailed info on what meds *can* cause drug-induced lupus, as well as the whole issue with birth control pills, I'd really suggest Daniel Wallace's book (although make sure you get the 2nd edition, as the info on BCpills has been updated, I believe).

If you want the official, technical info on various drugs (essentially the info that the packet slips are based on), a good site to check out is: http://www.rxlist.com/

Mikey

Oh well. Either way, it didn't help, and the last time I had the test it came back negative, butterfly rash and all.

Morning all Right, a bit of lunch, some more coffee and I'll dive into the article again, hopefully get it a bit more sorted for help people

Are we still wroking on this 2legs? Have you incorpoarted any of the suggestions, or have you decided to do otherwise?

Are there additional comments from reviewers?

Friar

I've touched it up a bit, but I still think I need to do some on it.... Perhaps you could have a quick look, see if you think its heading off in the right direction?