Monday, March 24, 2008

msb-0278 Iron In My Ears

msb-0278 Iron In My Ears


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...

You know what I find incredible is that so many of you come back for this boring auditory abuse. I mean really... I'm humbled. I play some good tunes now and then but, really, I'm humbled.


And nobody had better tell me squat about the "French" episodes because those episodes are almost "twice" as popular, getting twice the number of downloads, as the "English" ones for the same amount of time. There is a hunger for, something, in the French speakers.


Okay, I'm here again with my MSers to gird my loins like "Finley Peter Dunne" [ ] and getting ready to "comfort the afflicted and afflict the comfortable" [ more of the quote can be found at: ].

I am trying not to, but I'm being inevitably drawn into the role of a kind of journalist.

On the wiki front, I can report some

Now I have to configure the bugger. ("OUCH!")


The shows are getting posted up later because I'm having to record them later because the building next door is having its bricks repointed (And they're drilling out the old mortar with this loud, LOUD power-saw reciprocating thing.)

---- "Our Truth" by: "Lacuna Coil"

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"


Somebody heard me and dropped me an email. (See, you're "not" just listening to the lone rantings of a solitary lunatic, [with kick-ass taste in music. :-])

Manon Husman of "icyou" [ ] dropped me a note telling me of their new service. To quote from the email:
"Hello, I am an outreach coordinator for the healthcare website icyou <>. I'm contacting you because March is National Multiple Sclerosis Education & Awareness Month and we are working to help spread information and raise awareness about MS. icyou is a health-oriented, user-generated video aggregator and content producer covering a wide variety of health topics; everything from video definitions of common diseases and conditions to stories about cancer patients to coverage of health policy and politics. You may be interested in seeing some videos of Lauren Parrott, one of icyou’s contributors who is living with Multiple Sclerosis. You can view these videos and others by clicking on this link [ ]. All of our videos are free, and we'd love for you to embed them and feature any of these videos on your website. Our goal is to simply spread the information as far and wide as we can. Also, while we have your attention, we want to let you know that makes it easy for anyone to post their own health-oriented video. We'd love for you and your readers to sign up and join our healthcare video community. It's free to join and upload as many videos as you want, and the more voices, the more healthcare information is available and the stronger the community becomes. If you have any questions or comments about these videos or icyou in general, please don't hesitate to contact me. Thanks very much for your time. Regards, Manon Husman
There you have it folks, (complete with hot links for my iTunes audience!)

Got a digital video camera or even a digital camera that can also record video?

You can send her email and see if what you might have to say might be relevant.

It is certainly important, even if only to you.

And if its important to you, who knows who else it might be important to.

---- "HeavensaLie" by: "Lacuna Coil"

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)"

---- "Medusas Coil" by: "HIGHLORD"


If we were represented proportionally in the media, we should get a little over a minute of air of TV air time per day. (1,440 minutes in a day, 1 in 1,200 people with MS ... Do the math. It works out to 72 seconds a day.)

But we're disabled, so we're part of a minority that is so underrepresented that its criminal.

When is the last time you turned on your TV so you could watch a show about you and the problems you face as you struggle with MS?

How about "nev...ver"?

---- "Closer" by: "Lacuna Coil"


I am angry at the all-too-human tendency to ignore problems until its "half-past-too-late" but I'm realistic enough to not waste my time trying to change it.

The mainstream media will forever remain closed to us. (Screw 'em anyway. Who need 'em?)

We have the internet and we have podcasting.

I've had audio shows, video shows and even put up a PDF to prove that it could distribute all kinds of media.

I know my limitations, but they're "my" limitations, not podcastings'.

I'm sitting here drinking a "Pacifico Clara" [ ] brewed by "La Cerveza del Pacifico" [ ] and getting as quietly rocked as I would from any other beer that advertised on "big media" [ ].

Like I said: "Screw 'em anyway. Who need 'em?"

We're people on the fringe, skirting the edge of everything and anything because we represent something outside the 85% ("Hell", the 15%) of what the media want to appeal to.

To paraphrase "Richard Millhouse Nixon," [ ] (a man that I might have hated in his day, but when the proper "tour de phrase" was required, he hired the right speech writer,) we are part of a "silent minority".

Well, I'm sick and tired of being part of that silent and ig-friggin'-nored minority.

On this here intarweb with its infinite series of pipes, this trucker wants to shove the pedestrians off the road and get my "Winnebago" [ ] through.

---- "Swamped" by: "Lacuna Coil"


We don't even friggin' "exist" to the media and we can expect that situation to continue "for-friggin'-ever".

Now, I am "not" trying to make them pay attention and take notice. (Frankly, we couldn't make enough noise if we marched, or wheeled, into line at an airport, fired off cap pistols and and made, like, loud "boom" sounds. [ and episode msb-0132 Nerdcore {but the original video is at and Doug is a "sad head case".}])

What I "am" saying is that we have the opportunity to exploit the same technology and the same internet to make our own media, our own shows.

We have the opportunity to have our own piece of the internet, competing for our "attention ", "our" attention, instead of the current oblivion we now face.

I'd "love" for somebody to see what I see, that there's money to be made here, and that there advantages to be drawn from paying attention to "us" MSers.

---- "Photosensitivity" by: "Solstice Coil"



Miss Chris said...

I am so frustrated that we don't exist in the eyes of the media. Every time I see a commercial for breast cancer I wanna scream!

Shauna said...

Charles my dear, I need Big Media...I work for 'em...


Charles-A. Rovira said...

Hello Miss Chris,

since about 1.3 million women will be diagnosed with breast cancer annually worldwide and about 465,000 will die from the disease (from ) I don't think that the rates (comparable to MS) or the severity (much worse outcome since cancer is killing almost 40% of its victims) is directly comparable.

Face it, we've got MS but we've only got MS. If it was worse, we'd get the opportunity to be the "squeaky wheel.

What I'm doing here is an end run around problem we have with being underrepresented in the media by creating the podcast and now the MSWiki (it still needs a lot of security options enabled and some work on the look-and-feel so I'm not giving links quite yet, but its up and running. Soon any and all MSers will be able to use the MSBWiki as a resource.)

Charles-A. Rovira said...

Shauna my love, Big Media needs you (well your skills and talents,) which is why they're employing you.

The day that they don't, through whatever corporate take-over or other financial requirement, is when you'll become an ex-employee.

As emperor Vespasian remarked "Money has no odor".

I'd add that it doesn't have any loyalty either.

That's why I am convinced that podcasting will work.

Its cheaper than the alternatives. (Not everyone can afford to push their stuff on TV and the alternative is relative oblivion, neither of which constitute an acceptable ROI, so what do you want?)

Podcasting is IT, the first affordable solution...

Miss Chris said...

I agree that breast cancer is more "serious" but I still cringe every time I see them on T.V. because I think they are too much "in my face" every time I turn on the t.v. I guess what I'm saying is that if we were represented in the media even on a semi-regular basis I wouldn't cringe so much.

Charles-A. Rovira said...

You're right of course, but I can imagine several scenarios where we would gather a lot more TV time none of which are good.

I'd rather be healthy but, all in all, I could be a lot sicker.