Yes, all valid points.
Thanks for not going batsh*t on me. Seriously!
It was originally written for my neurologist (on a dare), whom I didn't want to insult by providing footnotes etc. for points I knew he would be (or should have already been) aware of as individual points.
This helps me understand where you were coming from, but I still
think you should re-write it. The NMSS isn't your neurologist and neither is anyone else who'll read it. Prior to my disability I had a long background in writing, and the very first rule is to write for your reader -- who is no longer your neurologist.
Believe me, my neuro hated to read anything lengthy (matter of fact, I think he hated to read at all).
This will sound really strange, but writing it in medical research code allows the professionals to skip over a lot of what they don't want to read. It's a bit like an investment prospectus, which typically runs for dozens of pages but rarely gets read in its entirety. But the reader of only 10 pages demands that the other 50 pages be there or he won't believe any of what he does read. That's because one investor's meaningless financial statement footnote is another investor's telltale clue.
In fact, if anything's missing, the S.E.C. won't allow it to be published. If by some quirk it got through the S.E.C., the investors would toss it in the wastebasket, including the investors who otherwise would have bought the shares without reading the document. Does that mean form trumps content? Not at all. It means that if you want someone's money you'll give them the right words, in the format that he expects. If you can't do it, you could be offering shares in the second coming of Jesus Christ and you won't get in the door.
Paradoxical? Unfair? Silly? Yup, just like a whole lot in life. Think of it this way: You're out to send a message, not to reform the subcultures that define the means of delivering it effectively.
I asked him later if he wanted me to provide the substantive materials (because I hated footnotes), and he said "no", because he did understand what I was saying without them, and knew me well enough to know that if I said I had it, I had it.
Once again, the audience is no longer your neuro.
Plus, as I got going, I had SO much substantive material that it got overwhelming, and I did stop organizing it all.
You truly have my sympathy, honest you do. Some good things about footnotes nowadays: 1) Word processing software has done a great
job of automating the creation and placement, 2) It's perfectly o.k. to put the footnotes at the end of the piece, and 3) you can put Internet links in your footnotes. Another approach would be to restrict footnotes to publication citations and use an Appendix at the back for rehashing concepts for the layperson.
My original purpose was not to have to send it on any further than my personal neurologist.
From my perspective as a reader, I don't care if your original purpose was to howl at the moon.
When I'm the reader I am in charge. Your original purpose and a buck and a half can be exchanged for a good cup of coffee out here in Seattle.
I'd HATE it if someone compiled legal issues for presentation to me, and they included a lot of substantive material and footnotes for basic legal knowledge that I am well aware of.
Really? What if you came across a Supreme Court opinion that wasn't footnoted? The first thing I'd do is wonder whether it was a Supreme Court opinion at all. Then I'd check to see which justice wrote it.
So....you are correct once more about your point about writing it in layperson's terms. It was NOT written for the layperson, I suppose. But I will admit that I do have trouble knowing how much a "layperson" knows.
Think of your layperson as a bright 12th grader with little background in the subject. All those acronyms and concepts gave me a severe case of MEGO (My Eyes Glaze Over) Syndrome. Those terms and concepts need to be defined. If you do Version 2.0 I think you'll be surprised at the challenge you'll face in being informative but concise. Footnoting isn't an excuse to take your reader over the woods and through the hills to grandma's house.
Am I aiming too high for the average Joe? I certainly didn't think so.
Without footnotes? Absolutely.
Again, I did not rewrite my findings for posting on this website for the general public, because can you imagine the LENGTH it would be to try to REALLY explain everything?
See my comment above about footnotes not being an excuse to inject air into the hamburger bun. As for the length, there are some ways to handle it. One is to have an abstract at the top. Then make the document itself downloadable. Use an early version of Word for Windows.
Within the document, use the following technique: 30-3-30, which refers to writing something that can be read in 30 seconds, three minutes or 30 minutes. You do this with a document title, a table of contents, an abstract and headlines. Often, the same reader is a 30-second reader and later a 30-minute reader. It's a challenge, but it's a very effective means of expressing complex ideas.
It would end up being 100 pages long.
I think you could do it in 25 pages with space left over for a review of The Decline and Fall of the Roman Empire
. 20-25 pages sounds like a lot, but what you wrote already took up 6 pages when I pasted it into Word and printed it out. If two-thirds was footnotes and/or appendices, you could preserve the structure of your narrative for the experts while accomodating the laypeople.
Plus, from what I gathered from the short time I've been perusing this website, it appeared to me that everyone here was VERY highly educated and knowledgeable about MS and the prevailing research theories, etc., so the thought of rewriting it for this website came and went through my mind fairly quickly, also.
I disagree. One of my complaints about some medical websites is that you get the feeling of joining a party that started a long time ago. People can be intelligent but not have the information to follow your argument. Why not accomodate them? Hell, you already did all that work; by contrast, writing it effectively ought to be duck soup in terms of the time spent.
I would have to narrow it down to one or two "points" if my purpose was really to get the NMSS to grant funds.
Please tell me you didn't send that to the NMSS as part of a grant application. Even if you didn't, a concise and focused argument understandable to professionals and laymen alike is a good thing, wouldn't you say? As it now stands, I am completely unable to weigh your fundamental arguments because you lost me in the tall grass of your acronyms and medical concepts.
That's hard for me to do, though, simply because there are so many valid theories circulating right now, and with desipramine's likely broad spectrum of action, which two or three would you choose?
You don't have to provide the answers to everything. You need to make an articulate case for what you want investigated further.
So, if Dr. Calabresi could only relate to his findings and my reference that desipramine may prove effective for reduction of ion potassium, that's all he would need to check out. Dr. Rodriguez is currently concentrating on killer T cells, so again, that's where he would focus.
I can't speak for Calabresi and Rodriguez, but I think those kinds of people would look at your paper in its current form and not get very far. That's unfortunate, because I think you present ideas that ought to be considered. And, as a layman who has MS, it would be nice to be able to follow the issue.
To me, the medical world must define the word "findings" as meaning original "discovery."
I may well be wrong about that point, but I don't think so. And remember, it's their
code, not yours.
I've learned in legal writing that sometimes you need to place emphasis in your writing or it is misunderstood.
I'd lay off the capitalization. If it were me, and I felt the urge to emphasize, I'd use italics. Capitalization is the trailer park of written expression.
Besides, did they REALLY spend all that much time critiqueing my writing technique? If they did, then that tells me where their head is really at, also.
No, they did not
spend time on your technique. I argue that they looked at what you wrote and said, in effect, this is a semi-crank wanna-be researcher and who has the time? It's not just about what you say, but also about how you say it. That's especially the case when you're an outsider.
I work at the headquarters of an international union, and am used to speaking familiarly with many political leaders, officials, etc. I consider everyone my equal.....don't you?
I consider everyone my equal as a human being. But, as a union employee, surely you'll understand me when I say that if I want to persuade someone of something, then I will take careful note of who the target is and what approaches will be most effective. For instance, it is unlikely that I will persuade a German by stating my argument in Mandarin Chinese, no matter how impassioned or well-reasoned it might be.
Why should I have felt that I might need to "beg" for his respect for my credibility?
I'm not advising anyone to beg for anything.
where did you get the idea that anyone thought that the NMSS was NOT nice or responsive to us MSers, or that their answer to me was taken for granted? You didn't get that idea from me.
There have been some others around here who have been taking shots at them. This might have been reflected in what I wrote. My error.
And my "conclusion" was stated. My conclusion is that there is far and above enough evidence out there to take desipramine to clinical trial.
It's really not stated unambiguously and clearly. There's no identifiable "conclusion" section to your piece.
Right now, we're stuck - unless or until a clinical researcher with a little moxie, as they say, moves on this themselves. I could do it myself, but again.........tell me why? Aren't they there to help us? If not, why are we raising money for them to continue researching for our benefit?
Well, that would take some persuasion, wouldn't it? And if you want to persuade, then you must speak in your target's language. You have two kinds of targets: Medical researchers and interested laymen. I think your piece largely misses both audiences.
That's the bad news. The good news is that you missed your targets not on account of a lack of substance but because of the format and manner of expression. Those are problems that can be fixed.
Remember, revision is the soul of good writing. Oh, and ellipses consist of three periods, not five or eight. They are used to indicate a gap in a quotation, not a pause in a narrative or to signal a mood of wistful reflection.
And I hope I haven't come across as sounding "defensive", because that's not the tone with which I am speaking at all.
A little, but not too much. I was pretty blunt, and it's only human to want to defend one's self. But I think you've been remarkably non-crazy in response to me, and I want you to know that I notice it and very much appreciate it. If you can keep your cool after this picky and sometimes sarcastic (or was it just curmudgeonly and condescending?) rebuttal, then your name will be sent to Rome for future beatification.
It's really refreshing to be able to have such a direct exchange without personal brickbats.
All the best, and I really hope you'll take a whack at a Version 2.0 sometime. You've got a lot to say, and I'd hate to see this wither on the vine.
With TCA antidepressants, you have to take about 5 or more times the dosage that I'm on for it to affect your "mood" at all. To get anti-depressant effects, it takes a high dose, which I am not on. I think I mentioned how efficacy for MS would probably show itself at a pretty low dose of desipramine.
Thanks for clearing that up.