Thursday, October 21, 2010

Carnival of MS Bloggers #74

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Memory, Language, and Humor
by Mary of Travelogue for the Universe

Proteins and Memory,
are they one & the same?
If so true, it makes proteins
so important in our game.
The shots of proteins like the bee sting
can slow the MonSter that I know.
Is my brain full of complex
Protein strands imprinted with
Memories of long ago?
And will the funding last forever,
Will the protein soup be ever?
Will they some day, find a new way
to deliver protein feed.
To chew or swallow, cook or wallow in exactly
what I need?
For now I take the proteins,
shots really not that bad.
The only way I can, The only way is how
to keep the MonSter
far out on the curb.


by Jenn of Losing It

The day we finally went to the ER was the day I couldn’t put on my underwear and then face-planted in my kitchen, my body contorted on the floor like some sort of crime-scene chalk outline. I thought about how I might be paralyzed and wondered which of my darling pets would start gnawing me first. Et tu, Ella? (Just to clarify: I wasn’t naked in my kitchen. Separate incidents. Not that there’s anything wrong with that.)

So we head to Baptist NLR, the closest hospital to our house, and begin the obligatory ER wait. I see the nurse, another nurse, a doctor, and then a neurologist. He is a young guy, but he put me immediately at ease. He was competent, thoughtful, thorough, and Indian. I only point this out because, as it will become clear soon, there was a slight language barrier.

He did all of the standard neurological tests (I know this because I had epilepsy when I was younger). And then he had me walk up and down the hallway of the ER. I say walk, but it was more of a shuffle-lurch I was rocking at that point. I think he knew within the first five minutes what was wrong with me, but, like I said, he’s thorough.

And then we went back to the small ER room. He told us I would be staying at the hospital, which came as quite a shock because I expected to be in and out and on my merry little way. (Why I thought this, I still don’t know. Optimism? Denial?) I just nodded, trying to be the perfect patient, even though my throat was closing up as the anxiety crept in. His words were competing with my inner dialogue, and losing.

I needed to stay for days of observation and treatment, he told us. And I would get on steel rods for those five days, he said. He left the room to get my admittance paperwork started.

“Steel rods?” I blurted incredulously to Nick, my carefully constructed composure now crumbling. “Why on earth would I get temporary steel rods put in me? What good will that do? I don’t want surgery. Let’s leave. I’ll just keep the gown on.”

I was in hysterics.

Try as he may, Nick couldn’t stifle his laughter, which nearly provoked me to start throwing hospital equipment at him (Latex gloves, by the way, aren’t exactly as threatening as they may at first seem).

“Steroids, Jenn. He’s going to put you on a five-day treatment of steroids.”

“Oh.”

I began giggling uncontrollably. Nick joined in, our chuckling filling that small room with the bad fluorescent lights and echoing down the hallway.

And in that moment we knew: Whatever came our way, we’d be OK.


Potty Humor in New Jersey
by Lisa of Brass and Ivory

Folks with MS are not the only ones who find value in appropriately-placed facilities.

 
"Reserved Seating"

"I Have To Pee"
After admiring the handiwork of these signs (and laughing), I just had to document the spottings.  Have you spotted clever signs on your journeys?  If so, please share them in the comments section.


This concludes the 74th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on November 4, 2010. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, November 2, 2010.

Thank you.

Comments for this post.

Wednesday, October 20, 2010

Hallowgreen Contest - Fight Air Pollution

One of my horn students and a classmate have entered the Arlingtonians for a Clean Environment Hallowgreen contest.  Their 3-D project (seen below) depicts problems with air pollution and is labeled "Gunston MS Air Pollution."

With an online component to the contest, it'd be great if you checked out the submissions and voted for your favorite project (which is "Gunston MS Air Pollution," right?)  The projects will also be judged next week at the Hallowgreen benefit, sponsored by the organization.  Only one vote is allowed per computer or mobile device.


Please vote and feel free to pass this on to your friends.



Hallowgreen logo
As part of the Arlingtonians for a Clean Environment Hallowgreen celebration, we are holding an Eco-Horror Contest, and YOU get to pick the winner. Each of the participating teams is creating a spooky display on an environmental topic facing our community. Vote between now and Friday, October 22 for your favorite. The winner of this online contest will receive $50, to be presented at Hallowgreen on October 27.
Gunston MS - Air Pollution - This model portrays Smogville and Greenville. Smogville models a town with terrible air pollution and the effects it has on the city and people's health. Greenville is a model of what all US towns desire: pure, clean, air!
Gunston display - air pollution

http://survey.constantcontact.com/survey/a07e32nn4xhgfd4z4km/start

Tuesday, October 19, 2010

Is Pharma Paying Your Doctor?

[Note: Majority of the information below was pasted from an email announcement and one other source online.  I just fixed some of the links.]

An historic piece of journalism was published today. Six news organizations partnered on the "Dollars for Docs" project - ProPublica, NPR, PBS's Nightly Business Report, the Chicago Tribune, Boston Globe and Consumer Reports. They examined $258 million in payments by seven drug companies in 2009 and 2010 to about 17,700 health care practitioners nationwide for speaking, consulting and other tasks.  The project offers details on the seven pharma companies, the top earners and a chart of the number of doctors in each state, their professional backgrounds and what they did on behalf of the drug companies.

In a major investigation of pharmaceutical company payments to doctors, ProPublica and our partners found that hundreds of the doctors who are being paid to promote drugs have been accused of professional misconduct, were disciplined by state boards or lacked credentials as specialists.  A sidebar piece examines lawsuits brought by former pharma employees who alleged their companies illegally marketed brand-name drugs.

Today, NPR will feature interviews with Charles Ornstein on Morning Edition and Tracy Weber on All Things Considered and next week NPR's Alix Spiegel will have an in-depth piece.  The Boston Globe and Chicago Tribune published their own related stories, while the Nightly Business Report will run features on their program on Tuesday and Wednesday.  And Consumer Reports published a survey of patient attitudes toward pharma payments to doctors.

Ornstein and Weber won a Pulitzer Prize for their King/Drew medical series in the Los Angeles Times in 2005 and they were finalists for the award this year for their coverage of health care issues for ProPublica.  Both are available to do interviews to discuss this new investigation.  The reporters will also host a conference call this Thursday, October 21st at 3pm Eastern to explain how other reporters can follow up on their work and do their own local investigations (details to follow soon).  We hope you will join us by writing, blogging, tweeting or republishing it for your audience.  Please feel free to contact us with any questions at all.

Best regards,
Mike Webb & Quadia Muhammad
ProPublica
917-512-0233

Monday, October 18, 2010

Ocrelizumab in Multiple Sclerosis

Many news stories are flooding my Google Alerts due to ECTRIMS which occurred last week.  Many abstracts to read and discuss, so little time.

One treatment which I'm keeping my eyes on is ocrelizumab (which is basically the humanized version of rituximab).  Studies of ocrelizumab in rheumatoid arthritis were halted last March due to deaths in the Phase III trials.  Studies of ocrelizumab in lupus have also been halted.

I'm personally interested in following the success of ocrelizumab just so that MS patients might be able to try it on-label, as opposed to attempting to use rituximab off-label.  But if it proves to be unsafe, then we should all stop to weigh the benefits/risks (as we should with all treatment choices).

I'm including one brief article below regarding this new information.  Please do follow the links at the end of this article for more information.  The one statement which gives me a little twinge in the stomach refers to the MS market quickly growing to $13 billion.  Just a couple weeks ago, it was estimated at $7 billion.

While I do not believe in conspiracies to keep us "sick", I must concede that we represent a lucrative market.  Too many dollar signs floating around.  Sigh. 
Patient death mars promising MS results in PhII ocrelizumab trial
By John Carroll
Just five months after risk factors forced Roche and Biogen Idec to scuttle a program to develop ocrelizumab for rheumatoid arthritis, researchers are touting new mid-stage data showing that MS patients on the drug experienced a reduction in relapses and brain lesions. But they also noted that one person died in the trials and that patients in the drug arm of the trial experienced a higher rate of some side effects than the patients in the placebo arm.
The patient died from systemic inflammatory response syndrome, which is sometimes caused by infection. But the researchers said they could find no evidence of opportunistic infections in the study. Infusion site reactions among patients taking two different doses of the therapy were significantly higher than the placebo group, though researchers reported that the reactions were largely mild to moderate and tapered off during the second infusion.

MS is one of the hottest fields in drug development. Pharma companies are zeroing in on a market with high unmet medical needs, with analysts forecast MS drug sales are quickly headed to $13 billion.  Roche and its partner say they are ready to

"We are strongly encouraged by these data and the possibility that ocrelizumab could become a new option for patients with MS," said Dr. Hal Barron, Roche's chief medical officer. "We believe in the potential of ocrelizumab and look forward to exploring it further in the final phase of clinical development."

Patient deaths during the Phase III RA trial doomed the program. The two companies shut it down, just as they did for lupus. Ocrelizumab had been one of the brightest starts in Roche's pipeline, but its potential blockbuster status has dimmed considerably in recent months.

- check out the Roche release for more
- read the Reuters story

Related Articles:Roche, Biogen shutter blockbuster ocrelizumab arthritis program
Infections and deaths force Biogen, Roche to suspend blockbuster program


Wednesday, October 13, 2010

Patients Speak at BlogWorldExpo2010

It's finally here!  BlogWorld Expo’s Social Health track is happening on Thursday, October 14, 2010.
KevinMD at BlogWorld Expo 2010 Social Health track

I’m joining some great patient bloggers and activists on a panel discussing Patient Blogging and Disease Awareness: Sickness and Health on the Web.

Thursday October 14, 11:00 AM - 12:00 PM
Room: Tradewinds A & B / 10
Trisha TorreyJenni Prokopy Amy Tenderich Lisa Emrich
Trisha Torrey (Moderator)
TrishaTorrey.com
Jenni Prokopy
ChronicBabe
Amy Tenderich
Diabetes Mine
Lisa Emrich
Brass and Ivory

Patient bloggers and online advocates are finding new ways to connect, launch advocacy and disease awareness campaigns, and use web-based tools to manage chronic conditions.  Their influence has grown to the point where they are even being approached by the pharmaceutical industry to become involved in sponsored initiatives. Does this mean a larger voice for patient experiences and viewpoints or does it hinder trust in the patient community? This panel looks at issues involved in working on both independent and sponsored advocacy projects, and explores the issue of transparency in patient blogging.

I'm so honored that Kim McAllister of Emergiblog invited me to participate.  It will be great to reconnect with Kerri Morrone Sparling of Six Until Me, Manny Hernandez of tuDiabetes and Diabetes Hands Foundation, and Dave deBronkart, aka e-Patient Dave, who is providing the keynote. 

Kerri, Manny, Dave, and I were among the epatients featured at the ePatient Connections Conference just a couple of weeks ago in Philadelphia, Pennsylvania.

Big thanks go to the sponsors, Johnson & Johnson (presenting sponsor), MedPage Today and Campaign for Nursing (supporting sponsors), and WEGO Health (associate sponsor).  The Social Health Track at BlogWorldExpo2010 would not exist without their support.

Tuesday, October 12, 2010

Five-year Anniversary


Five years ago today on October 12, 2005, my neurologist didn't tell me I had MS.  However, this was the day I was officially diagnosed with definite MS. Of course I had been living with MS for longer than that, it is just the day that it became official.  Time certainly has flown....much of that due to the great friends and support I've received from the online MS community.  Thank you!