Monday, April 21, 2008

msb-0290 A Flurry of Leaves

msb-0290 A Flurry of Leaves


Disclaimer! Disclaimer! Disclaimer!

MSBPodcast is "not" any kind of a medical podcast.

It is by and for MSers.

Its purpose is to keep us entertained, to explain our symptoms, to remark on our discoveries, and to raise the general consciousness about our disease.

The path to illness is shadowy, murky and rough strewn.

The path to wellness is lit by the lamp of knowledge.


Feedback comes first, so...

The first three songs on this episode are by a band called "Dead Leaf Echo" and the last three are by a band called "Carbon Leaf".

"Dead Leaf Echo" are New York band that I have played before and they are fronted by a likable young man (LG) and a likable young woman (Liza B.)

They show promise. A few more years (it takes 15 years to become an overnight success and they'll get to play on a mixing console that really kicks ass,) and they'll really get somewhere with their music.

I turned them onto the PMN (the Podsafe Music Network) and I hope people get the same vibe from them that I did.

Come to think of it, I have to get back in touch with "The Detonators" (They've got quite a few plays since I turned them onto the PMN.)

"Carbon Leaf" I just like the sound of. I don't know the band beyond that.


I heard from Kathryn Martin, who is the Public Affairs/Patient Advocacy Manager at "MediciGlobal".

She has asked me to post the following:
“Give your opinion on MS materials and designs.

Your opinion counts and this should take no longer than 5 minutes or less!

We’re creating materials about an upcoming multiple sclerosis clinical trial, and we welcome your input.

We’d like to know how you rate the design and look of the materials. We don’t ask for any information about you.

This survey is anonymous. No identifying information is collected.

Please copy and paste the following "link" into your browser and you will be connected to the survey: [ That's only if the link on the word link doesn't work. ].

We really appreciate your feedback!”
---- "Pale Fire" by: "Dead Leaf Echo"

Feed Forward comes next, so...

This is "your" segment.

Say "your" piece on this segment.

Share with other MSers whatever "you" want to share.

Drop me an email: "charles at"

---- "Tears" by: "Dead Leaf Echo"

Feed Me comes third, so...

Do you have a therapy, product, good or service that is of interest to MSers?

Consider advertising on this podcast.

Reminders on this segment only cost $0.03 per reminder per download of an episode. (A $30CPM targeted at MSers.)

It can/should lead to a full ad, in text, audio or video, which costs $3.00 per download.

That sounds expensive until you do the math and realize that if nobody downloads it it costs you nothing, unlike print, where you often can't even get an ad in to the specialized journals, or radio or TV where you'd just be wasting your money with the 0.0833% MSers rate of return. (That's about six times "below" the level of "statistical noise".)

But MSBPodcast is 100% in your market, and you only pay per download of your material.

No play, no pay.

Reach the MSers who would buy your therapy, product, good or service, with-out having to waste your advertising money on anyone who is "not" interested...

Send me an email at: "charles (at)"

---- "Cry the Sea" by: "Dead Leaf Echo"


Sorry, I'm busy with other things.

If I don't hear back from the National Multiple Sclerosis Society or from the Multiple Sclerosis Association of America, we'll just do the wiki without them.

I'm not trying to muscle in on their territory but I'm inviting them to play on mine.

If they don't want to, that's their loss.

I'm trying to build a wiki and a society of MSers.

A place where "we"matter.

---- "Love Loss Hope Repeat" by: "Carbon Leaf"


Do these people even realize anymore that their function is to raise money, not to spend it on things like the production costs of a magazine.

(I'm self-schooled follower of "Harold Evans" [ ] and I have read the "Five-volume Manual of English, Typography and Layout" [ ] more times than I care to admit since I'd first found the books at the late and lamented "Academic Bookshop" in Montreal in 1976. [Don't knock it. I produced an award winning news letter for the Ottawa Chapter of the Ontario MS Society back in 1985 when I was first diagnosed.])

There are actualy "two" editorial budgets involved in producing content for their magazines, "Momentum", ( the old "Inside MS") [ ] and "The Motivator" [ ] (which sounds more like something read by "Rotarians" [ ] and "motivational speakers" [ ] ...)

The first is the apportioning of copy to a limited resource, the printable page, versus what it has compete with as far as illustration and ad content, and the second has to do with what is the cost of producing a given piece versus how much revenue it can be expected to produce.

If you use a wiki in your news-gathering operation, your articles are always the freshest that they can be and your print edition merely reflects the state of an article at a given point in time.

A wiki can keep things up to date, can relate a whole web of information, and can roll-things back if new information doesn't pan out.

It can be dynamic and features can adapt to the situation (like Google maps and Calendars and YouTube videos.)

It can also include a whole lot more than can fit onto a printed fly-leaf.

---- "Life Less Ordinary" by: "Carbon Leaf"


While I respect the NMSS and MSAA, I don't think they realize that "WE" are the ones with MS.

"WE", the MSers, don't feel like standing around, getting sicker, while the good doctors consult and the pharma co.s try us out as guinea pigs for re-marketing and re-branding their AIDS drugs.

The wiki will be open for general Beta trial next week and I'll be giving out the URL then.

Patience in some areas may be good and wise; but patience in other areas leads to getting notices late and news getting missed altogether.

Screw that...

---- "The Boxer" by: "Carbon Leaf"



mdmhvonpa said...

Now if Google would put out something along the lines of blogger where you can have a free hosted wiki ...

Charles-A. Rovira said...

Actually, there is!

PBWiki [ ] (but they didn't offer quite the feature set I wanted.)

Check out the original wiki [ ] pages that I created there two years ago.

I've gotten tired of waiting for their feature set to expand to include multi-media, Google maps, calendars and the like, so I've had to "roll my own." (in as much as I'd have to, using open source software.)

Also I wanted something that I could just hand over to any other group who'd be able to take over if I become incapable of taking care of it. (I "do" have MS after all... [And the thing could outlive me eventually. {Having MS may be an inevitable risk factor in having a self-tuning immune system. The need for MS kinds of treatments may always be there.}])