Carnival of MS Bloggers #124

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

MS Hug, Montel Williams, and Massage

MS Hug

by Estizer of MS Open Mic

 I read a blurb in the NMSS Magazine that stated African Americans with MS are less likely to use any of the disease modifying drugs than people of other races. That got my attention although I do think its a matter of personal choice,I choose to do drugs! I set out to find the nearest African American support group to check this out. That was 1.5 hours away in Philadelphia.  Like any other group I’ve come upon, I talked more than anyone in the room. Except this one guy, he was pretty cool. I brought up the article and as it stated most of the people in the room were not on medication. But what the article failed to address was how many people in the room had insurance or co-pay issues.  As I looked around the table I was far more concerned with the level of obesity and a host of other health issues that must only complicate MS.

Everyone went around the table and talked about what bothered them last month and then it was the cool guys turn)At first he had a burning pain in his leg JUST LIKE MONTEL but when Montel said it I thought it was totally BOGUS DUDE and he just wanted to smoke some weed, but now I believed him! (Sorry Montel) Next the cool guy said he had an MS Hug and EVERYBODY in the room was like “oh yeah, oh yeah…they’re the worse right? Hahaha, oh yeah” EVERYBODY except ME! All of the sudden I felt like I forgot to put my drawers on. I just sat really quiet so nobody noticed.

Now… how cool was I when two years later I felt an intense tightening around my chest, along with a pain and burning sensation. I clutched my chest… awashed in fear! This was it! Did I go to the emergency room? Because these were all the signs of a heart attack. I DID NOT. Why you ask? Because this was an MS HUG like the cool guy at the support group had described…just like it…right…everybody said so, right?

Montel Williams Interview on Larry King

by Eddie at Multiple Stupidness

Montel Tells

When I first became ill, I scoured the internet for information on MS. Of course, this included YouTube, and there are probably hundreds of videos there concerning MS. Some are informational, some are testimonials and some are interviews or excerpts from programmes. Some are depressing and misleading, some are interesting and informative, and some are absolutely inspirational.

One of my favourites is the interview on Larry King Live of Montel Williams. I hadn't heard of him before I saw the interview, but he is an American talk show host who himself has been diagnosed with MS. As I watched it, it was wonderful not only because here was a man describing very, very similar symptoms to my own, but he was able to express things about MS that I felt, but had never been able to adequately verbalise.

An example of this is the injection I take every other day. I hate taking my injection. I hate it! Why? It doesn't hurt particularly. It's take less than five minutes, and I don't really suffer side effects from the betaferon like I did in the beginning. So why do I hate taking it? Montel Williams explains it beautifully, and very quickly I started directing people to these videos if they really wanted a clear, articulate expression of what MS is like and, because my illness felt so similar to his, a little of what my experience is like.

[Please go to Eddie's blog to view the videos.]

Massage Benefits MS

by Caroline of the Girl with MS

Many folks have asked about the benefits of massage for folks with MS.

Bottom line, I prefer spending my money and health on massage than on many of the Western "medicines" created for MS. Which don't seem to be true medicine. They are drugs that cover up the symptoms. So how do we reduce the symptoms and treat MS proactively?

Massage!

Among other ways to live healthy including nutrition, exercise, and spiritual well being, massage is a great physical way to remove toxins from our bodies. Whatever caused our MS or whatever exacerbates it, the one thing we can do is keep our body as clean as possible.

Now this is not always easy. Trust me! Coffee, tobacco, alcohol, artificial sweeteners, fake foods, artificial or fake anything can send MS into a tizzy.

The goal always is to reduce these toxins and increase MS beneficial foods, such as cooling mung beans and detoxing apples.

One thing we can do to remove toxins is to have a massage. And what a treat it is!

Massage seems to help in several areas: spasticity, pain, fatigue, poor circulation, and mental wellness...ahhhh....

The National MS Society has good information about massage and bodywork therapies click here. Here is the NMSS summary of how massage effects (or not) the course of MS.

"Massage and the underlying disease of MS:

While massage can be helpful in relieving stress and inducing relaxation, it has no effect on the course of MS. A 1998 study investigated the effect of massage in people with MS on:

• relief of anxiety and depression 
• improvement in mood, self-esteem and body image 
• increased ambulation and improved physical and social functioning. 

The study used self-reports by the participants and found that, at the end of a five-week period, physical and social activity had improved in the people receiving massage. Those in the massage group also reported a decrease in depression. There was, however, no improvement in grip strength and only marginal improvement in ambulation." 

So, keep up the massage and add some strength training or yoga to keep those muscles strong!

Lance Armstrong's LIVESTRONG.com talks about the benefits of massage on pain in MS sufferers. By reducing pain, massage can help folks become more mobile. Less pain = more movement. Folks withnMS don't want to be in bed. Sometimes we don't have much choice.

Massage & Bodyworks Magazine has done their research with regards to MS and massage presenting us with one of the most comprehensive yet simple to digest articles summarizing MS, the disease, along with the benefits of massage.

"For the MS patient, a well-being approach for addressing body, mind, and spirit is essential to combating the effects of the disease. Helpful self-care can include a daily routine of tai chi or yoga, meditation, and attention to diet." 

They get it. They get the disease and seem to understand what we need to feel better.

Many therapists, especially in the Northwest where prevalence is higher, jphave numerous MS clients. Crowell is one of them:

"With her extensive MS experience, Crowell says she has learned the importance of balance between releasing spasticity and maintaining enough tone for the client to function. “If you relax someone with MS too much, they can’t walk when they get off the table. They use the spasticity to keep them erect.” By implementing a reflex response technique, she reduces spasms without decreasing tone. The client is better able to maintain standing balance, and for those who are not ambulatory, core stability is increased so they can sit better. “One of the things people tend to lose is control. You are working with refining the amount of contraction they use with a given movement."

Wow! This is some great stuff. A must read for all with multiple sclerosis.

The American Academy of Neurology talks about the most common massage techniques used for reducing pain in MS patients:

• Craniosacral massage: Light pressure is applied to the head, neck, and spine to ease tension and compression. This type of massage is not appropriate for people with conditions that could be affected by intracranial pressure changes, such as acute aneurysm, cerebral hemorrhage, or hydrocephaly. 
• Lymphatic massage: Light, rhythmic strokes are used to improve the flow of lymph (a colorless fluid that helps fight infection and disease) and get rid of waste throughout the body. Lymphatic massage is often used to reduce post-surgical swelling and to help heal sports-related injuries. 
• Myofascial release: Pressure and body positioning are used to loosen and stretch the muscles, fascia (connective tissue), and related structures. Both physical therapists and massage therapists who are appropriately trained use this technique.
• Reflexology: Specialized thumb and finger techniques are applied to reflex points in the hands and/or feet. 
• Shiatsu: Gentle finger and hand pressure are applied to specific points on the body to relieve pain. 
• Swedish massage: A variety of strokes and light-pressure techniques are used to enhance blood flow, remove waste products from tissues, stretch ligaments and tendons, and ease physical and emotional tension. 
• Trigger point massage: Pressure is applied to trigger points (tender areas where the muscles have been damaged or where tension accumulates) to alleviate muscle spasms and pain. 

One of my favorites? Lymphatic massage...you can feel the toxins being squeegeed out of you! But I love them all. In fact, I'm off to get one now! What's your experience? Pro massage or toss it?

This concludes the 124th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on October 11, 2012. 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, October 9, 2012.

Thank you.

Comments for this post.

Carnival of MS Bloggers #32 - Montel Edition

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

Reflection, Suffocation, and Montel

Happy 1st MS-iversary to me!
from Tingly Feeling

This post could also be titled, “How Old is This Mascara?” Because I was buying mascara when I got the phone call from my neurologist about the results for my second MRI.

That wasn’t the diagnosis phone call, though. That was the, “It’s either bad news, really bad news, or inoperable-tumor-on-your-spine news” phone call. Not the kind of call you want to get in the Nordstrom cosmetics department. So I took it outside to the sidewalk.

The bad option was Transverse Myelitis, a virus that could possibly have gone away, and the really bad option was MS. I still didn’t believe it was MS. I was crossing my fingers that it was this crazy virus, which still sounded pretty scary. But then again, I said to the doctor, my sister has MS and it doesn’t seem like the end of the world….

“You don’t want to have MS,” he said.

After we hung up, I went back inside the store and bought my mascara. (The sales girl was really nice; she later sent me a thank-you card for buying the mascara, with something cute written about how my lashes would be the envy of all my friends.) I left the store and called my best friend while standing on the sky bridge above 6th Avenue, watching the traffic pass below.

I started experiencing symptoms in fall 2007, when I was in physical therapy for an injured knee, which then aggravated “nerve damage” in my right leg, supposedly caused by an old ankle sprain (I am accident prone). But then the PT started to make my left leg go numb, so the therapist sent me to a neurologist.

The third MRI happened on Friday, March 26, 2008. The doctor called with the results that same night so I wouldn’t have to wait out the weekend: about 20 inactive lesions on my brain. “I hate having to give news like this,” he kept saying. Boo fucking hoo, I kept thinking. This is your job. He’s not my neurologist anymore.

Many doctor visits, three MRIs and one very surreal year later, here I am. My symptoms from the original exacerbation have never completely gone away. It’s crazy to remember a time not so long ago when I wasn’t aware every day that I have Multiple Sclerosis. That reality has been supplanted by this one.

Anyway, it’s time to throw out that mascara. It’s waaay past its shelf life.


The Face of MS? by Nina

Well, in case you missed it. Montel was on Oprah today. He was crying his eyes out. I can’t believe all the tears that went on. He clearly is deeply impacted by MS. He says that his shot everyday is just more reminders that he has MS. A sad depressed reminder. Anyway, one and one he went. The tears kept flowing. He was depressing me!

And I can not identify with him at all. When he called himself the face of MS, I laughed. Not my MS! Maybe its someone elses MS. Is he your face of MS?

Sounding Off About Montel's Appearance on Oprah 

by Kelley

I wanted to write this earlier, but I decided to wait until I had cooled off a bit. I was quite disappointed with the misinformation passed on during this show. I hope some of you brothers and sisters will join me in writing to Oprah to express our disappointment. That is, if you agree with my take on the show.

Although Montel's crying was touching and perhaps pulled at some heartstrings, somehow it felt very hollow to me. I felt his main purpose on Oprah was to sell his book. Which is fine. But do not try to sit there as if you are the spokesperson for everyone with MS. You do not speak for me! And you definitely do not speak for me if you are feeding the public incorrect information.

Case in point, Montel stated that there are 1.5 million people in America with MS who each suffer differently with the disease. Yes, everyone suffers different symptoms, but 1.5 million people? According to the National MS Society website:

In the United States today, there are approximately 400,000 people with multiple sclerosis (MS)—with 200 more people diagnosed every week. Worldwide, MS is thought to affect more than 2.5 million people.

Granted, these numbers are not the most reliable. There is legislation in the works to remedy this. However, I believe 1.5 million is a bit of an overestimate. OK, so the number of people in the U.S. with MS is questionable, but why am I so aggrevated? Read on.

Dr. Oz says suffocation caused by chest hugs is the leading cause of death for people with MS. Another leading cause? Suicide.

Excuse me? Suffocation?! Where did they get that figure? It is my understanding that only those with extremely advanced cases of MS die because the diaphragm does not cooperate. Way to scare the crap out of anyone watching who has been recently diagnosed! Oprah herself even said that Montel was battling a "life-threatening" illness. Uh, no. MS is not life-threatening. It is a chronic illness that must be managed, not beaten. At least that is what I need to believe right now to keep living. I was so outraged by the above statement that I had to do some research on my own. I feel vindicated, because I found that:

Very rarely [emphasis mine], there is a rapidly progressive course leading to death. MS itself is almost never the cause of death [again, emphasis mine]; death results from accompanying complications or infections. Generally speaking, the life expectancy of those with MS is at least 75 percent of normal. (from Life With MS)

Also, in the Journal of Neurology, Neurosurgery, and PsychiatryI found a study regarding survival and cause of death for MS patients. I could not get access to the entire article (I'm cheap), but the abstract had the following information:

Median observed survival time was 38.0 years from symptom onset. Mean age at death was 65.3 for women and 65.2 years for men. Mean age at death in patients dying from MS-related causes was 62.5 and 69.3 years (p<0.001) p =" 0.01).">

I believe I am correct in assuming that yes, MS does shorten your life expectancy somewhat, but you are just as likely to die of heart attack, cancer, stroke, getting hit by a bus, as you are of dying from MS complications.

I only wish Oprah had an MS specialist or someone from the National MS Society on the show to educate the public on the real facts about MS. I also wish that the audience had seen other facets of MS, not just Montel's experience. The public should see a normal person with normal income trying to live with the disease. We don't have gyms in our homes or personal trainers. Many cannot afford the disease-modifying drugs that Montel feels are a "reminder" that he has a chronic disease. That "reminder" is a lifeline for me.

Is some MS education, even incorrect, better than none at all? Please post your thoughts.

Peace,
Kelley

Montel talks about his MS 

by Joy

Montel spoke about how he will never run again. I thought about it and shed a few tears as I realized the same is true for me. The nerves in my feet and the “Fast Twitch” nerves in my legs can’t respond fast enough for me to run. I have a very funny shuffle that is a source of great laughter to my children. My kids also enjoy pointing out how Grandmommie can run faster than I can. My dances are another blog by themselves but I still have fun moving.

After a few minutes of self-pity, I realized that I did not have plans or unfulfilled dreams to run in a marathon or even a 5K race so the fact that I can’t run is probably not very high on the priority list. Maybe, way back in my mind, I thought that I would be able to run again if I got some help with Multiple Sclerosis. I realize I have made tremendous progress with my balance and ankle strength so I will be thankful for that and hang up my running shoes.

Bald Ben says Yeah, I know Montel Has that....

My Mom called me today to tell that Oprah was having a special episode with none other than Mr. Montel Williams and his amazing incurable disease. I am sure my interest in Montel is evident as you tune into my blog here, however, Montel aside, I have a bit of a rule in my house, there are a bunch of rules in my house, but one of the most sacrosanct is: No Oprah.

I really can’t stand this lady. She seems to have all the answers. The words that slip from her perfectly botoxed lips, the gestures that issue from her well manicured hands, the opinions that inform every cloistered plebian in the lower 48 is enough to make this bald guy grow some hair. I wouldn’t be surprised to find out she is only a step away from being canonized by the Pope. I would imagine she wouldn’t be surprised either. I just find it hard to believe that a multi-billionaire knows how I should live. Yeah, I got your favorite things right here lady. No one mouth should have that much power. She all but bankrupted the meat industry. To be fair, though, I’m not sure she realized that her voice was that influential at the time. Yet I still hold a “beef” with her because of what I call the “Tom Cruise Incident”.

Anyway, today I had to lift the ban. God I wished I hadn’t. I tuned in just in time to see Montel in tears, which was a regular occurrence throughout the hour long love fest. However, these tears were not for the incurable disease coursing through his body or the unstoppable pain he has in his legs. No these tears were for her Highness Oprah herself. I suppose at some point in his career, Montel, was compared to the big O and he needed to thank her. It was all very touching, no vaulting from the couch, but touching nonetheless. The rest of the episode was taken up with Montel’s battle with depression, more tears, his work out routine, more tears, his love of fishing, more tears, oh and his new book. It was all a bit much.

Now please don’t think that I am coming down on the guy because he openly wept. There is nothing wrong with it, I am as guilty of it as anyone else. Sometimes things get a bit much and a guy has to let it out. The issue I had with the show was it all seemed staged for the cameras. If you ever saw Montel on his show he was famous for shedding a tear or two in response to the latest depravity he chose to parade on his stage. The tears, no matter how real, rang very hollow for me. I’m not sure what I had expected, there was little information for a person like myself, dealing with the inevitabilities of MS. The episode was far more for the average Oprah or Montel fan than for those of us out here fighting.

I often felt like I was watching the “Last Temptation of Montel”. When he choked up as he told Dr. Oz he takes 26 pills a day and an injection, “365 days a year.” I was very close to flipping the channel. Perhaps it is the fact that I, like so many of you, deal with all of these things everyday. We don’t have TV shows, we don’t get applause. We quietly live our lives, wishing, praying that whatever it is we have today is what we still have tomorrow. We all know how terrifying this disease is, and I am sure it is just as horrid for Mr. Williams. However he has been fortunate enough to have carved out a very lucrative living, and bravo to him, however, he will never know what it is like to truly worry, not only about your disease, but how the disease is going to deplete you’re your savings. Depression, paranoia, guilt, fear, nervousness, not only stem from MS, but every time the mail is delivered these feelings are compounded by envelopes from the health care companies.

I suppose all I am trying to say is that I am glad that Montel was able to go on Oprah today to speak about MS. Any awareness is a positive thing. Although I do wish that it was less about the trials and tribulations of Montel, and had been more informative about treatments or perhaps the future of treatment. At the very least the guy could have made the point that he couldn’t jump up and down on the couch because MS affects his legs and he would just fall off.


I'm Not Ashamed To Admit When I'm Wrong by Tracys Ramblings

Montel had a great opportunity to tell all of Oprah's viewers the hardships that we have to deal with on a day to day basis while living our lives with MS. Instead, he failed. He was there to sell his book afterall.

I thought Montel would shine a light on real life when you're living with MS. But, in the words of the ever wise Chowder, "I was wrong, I was horribly wrong!"

Montel Educates Oprah About MS by Diane J Standiford

Okay, Montel Williams our MS unofficial spokesperson was on Oprah today. I didn't want to watch, but a friend thought I should. Please, I want to like him, I really do, but I just can't. Before I tuned in I suspected he would have yet another book out, promising to inspire and enlighten those of us with MS---but, no, I would reserve such cynical judgements----what ho!? Sure enough, he was there to plug a book.

Oprah: "What scares you the most?"
Montel: "That I won't be able to walk."

Well, that was fair enough, at least he is not afraid of not being able to walk AND see. He is not afraid of not being able to pay all his health care bills or make his rent payment AND not be able to walk, see, AND have a sick spouse.

Now he says he is a changed man. You know, all those people who never appreciated the best things in life and now since they have MS--EUREKA---they love their kids more, respect their wives, enjoy a fresh breeze, etc.

He takes TWENTY-SEVEN "pills" for his MS...did he mean vitamins? Munchkin to Oz---what message about MS are you giving to people? What are these pills?? GIMME A BREAK.

Okay, Montel and I won't be dining together any time soon, but here is what really knocked my striped socks off----Oprah didn't know what MS really was. Okey dokey, where is all the MS Awareness money going? If O isn't aware of MS, then certainly Joe the one-day plumber hasn't gotten the memo.

And what is this about suffocation? Glad I taped it, Dr. Oz said the number one cause of death for people with MS was SUFFOCATION? Sufferin' succotash! What? How? Suicide? Seriously? Not heart or cancer? Talk about bomb dropping, from all the doctors I've seen since my DX in 1990 the word SUFFOCATION has NEVER been mentioned.

I truly respect the way Michael J. Fox has handled his disease and his goal of finding a cure and getting funding for research. When he speaks, he educates, and it is never all about him. Egads.


This concludes the 32nd edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on April 9, 2009. 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, April 7, 2009.


Thank you.

Comments for this post.

Montel Williams will be Lobbying against Price-Negotiation for Medicare Drugs

The pharmaceutical industry is not so keen in government having the power to negotiate drug prices for Medicare users. This on top of the fact that Medicare Part D has been a windfall for Big Pharma and they don't want anything to interfere with that.

Read below how PhRMA plans a media blitz to work against Obama's health policy agenda. I'm sad to see that Montel l has devoted his face and voice for the effort.

Hat Tip: David Williams at Health Business Blog - "Is Big Pharma Preparing to Shoot itself in the Foot?"

Drugmaker ads to target Obama idea
Lobbyist readies for prescription price fight
Sean Lengell, The Washington Times
Friday, November 14, 2008

The nation's largest pharmaceutical lobbying group is preparing a multimillion-dollar public relations campaign to tout the importance of free-market health care and undercut an expected push by the Obama administration for price controls of prescription drugs.

The effort, which will include a national television commercial scheduled to begin airing next week, is the first salvo in what likely will be a huge battle over health care reform during the Obama presidency.

Other major industries are also gearing up for the fight, including big businesses and insurance companies. But the stakes are especially high for drugmakers, which stand to lose as much as $30 billion in revenue if President-elect Barack Obama's plan to let the federal government negotiate Medicare drug prices is implemented, according to one independent report.

"There's no question that next year will be a challenging year," said Ken Johnson, senior vice president with the Pharmaceutical Research and Manufacturers of America, or PhRMA, which is organizing the campaign.

Mr. Obama attacked drug companies repeatedly during his election campaign.

PhRMA says its upcoming advertisement, which will feature TV talk show host and PhRMA spokesman Montel Williams, doesn't criticize the pending Obama administration or any of its health care proposals.

"We're going to do an ad campaign that is designed to make people aware of the importance of preserving your free-market health care system," Mr. Johnson said.

He added that PhRMA recognizes that "some reforms are needed in order to keep that system vibrant."

Mr. Johnson said PhRMA would've embarked on exactly the same ad campaign if Mr. Obama's Republican presidential rival, Sen. John McCain, had won last week's presidential election.

Mr. Obama has said he will hold drug and insurance companies "accountable for the prices they charge and the harm they cause." He has promised to allow Medicare to negotiate with drugmakers for cheaper prices, he said.

Giving Medicare the authority to negotiate drug prices - a provision that they currently don't have - would cause the pharmaceutical industry to lose $10 billion to $30 billion in annual revenues, according to a report released last month by the Boston Consulting Group.

"If you start to take a pretty big price decrease out of that large market, it has an enormous impact on drug companies and really their ability to generate their type of shareholder return that they have had in the past," said Peter Lawyer, a senior partner with Boston Consulting.

"I think [drug companies] are rightfully concerned about it. Even on the lower end of our estimate - the $10 billion - that's a big deal, that's a big chunk of your profitability."

The report analyzed the health care proposals of Mr. Obama and Mr. McCain.

With less revenue from Medicare, drug companies may begin charging more for drugs sold outside the program. And lower profits mean less money for research and development - and a reduction in the amount of new drugs on the market in the future, Mr. Lawyer said,

While Mr. Obama continues to hammer out his health care reform plan, Democrats on Capitol Hill also are working on their own proposals to overhaul the nation's medical system.

Sen. Edward M. Kennedy in recent weeks has orchestrated meetings with lobbyists and lawmakers from both parties to craft legislation to provide affordable medical coverage to all Americans.

The Massachusetts Democrat, who has been sidelined for months with a dangerous form of brain cancer, also has organized at least 14 roundtable meetings since June with members from both parties on the Senate committees with jurisdiction over health care.

Sen. Max Baucus, Montana Democrat, on Wednesday released a blueprint for universal health care coverage. His plan calls for a nationwide insurance pool that would allow those without health insurance to receive medical care.

House Energy and Commerce Chairman John D. Dingell, Michigan Democrat, whose committee has authority over health care issues, has vowed to make health care reform a priority in the coming year.

The PhRMA campaign won't be the first health care lobbying effort designed to sway public opinion against a new president's plans for health care reform. The "Harry and Louise" TV ads in 1993 attacked President Clinton's proposed health care overhaul, and were widely credited as playing a key role in killing the plan. The lobbying group Health Insurance Association of America, which ran the ads, spent $10 million on the campaign.

Drugmakers so far have generally shied away from criticizing the new administration, saying they are taking a wait-and-see approach to Mr. Obama's pending health care reforms. But the PhRMA ad campaign indicates that the industry is leaving nothing to chance.

Drug manufacturers also gave more than $1.6 million to Mr. Obama's presidential election campaign - almost triple the amount the industry gave to the Democrat's Republican rival, Mr. McCain.

"We've been moving the pieces on the chess board around for some time now getting ready for next year, and we've got a great game plan in place," Mr. Johnson said. "We think we've earned a right at the table, and we're optimistic that at the end of the day, the majority of members of Congress will recognize the importance of the pharmaceutical industry to health care."

Warning: Steroid-induced Annoyance Ahead

In January, I learned that Montel Williams is honoring Billy Tauzin at this year's The Montel Williams MS Foundation Gala & Pro Celebrity Poker Challenge. It is no secret that Montel has a very chummy relationship with Big Pharma and PhRMA (Pharmaceutical Research and Manufacturers of America) more specifically, of which Tauzin is the CEO.

This being MS Awareness Week and all, it seems like an appropriate time for Montel to hold his little soiree. But I gotta tell ya, this little tidbit of information just made me want to puke (or maybe that's the heartburn from day 5 of Solumedrol.) Tomorrow, you too can 'join in the fun' by signing up for the online Pay-Per-View event, just $9.95. Here's the Press Release regarding the live-streaming event and information regarding a Podcast interview with Montel himself.

So, please while the star-gazing, poker-frenzy folks out there in cyberspace pretend to pony-up to the table and hob-nob with the Big Pharma guys, I can only hope that my thighs continue to remember why they exist, my fingers continue to respond to the big great mind I've got in my little ol' head, the elephant continues to retreat from standing on my face, the growing tinglies ALL OVER which are revealing unknown numbnesses continue to go through their stages, my balance stops leaning to the right, and I survive another day without chewing off somebody's head or eating cardboard right out of the box.

Needless to say, I won't be watching the Poker Game.

Billy Tauzin to be honored at Montel Williams MS Foundation Gala

So today, I heard the news today (h/t Pharma Marketing Blog) that The Montel Williams Show will be no more. According to the AP report, the show will cease production after this the 17th season while stations will be offered 52 weeks of the 'best of Montel' reruns.

Then just yesterday, I was alerted to the fact that The Montel Williams MS Foundation Gala & Pro Celebrity Poker Challenge to be held on March 13, 2008 will be honoring none other than Billy Tauzin, former Louisiana congressman and current $2 million-a-year CEO of the lobby group Pharmaceutical Research and Manufacturers of America (PhRMA).

As President and CEO of PhRMA, which represents the country’s leading pharmaceutical research and biotechnology companies, Billy – himself a proud cancer survivor – works to ensure that patients everywhere continue to have access to the miracles of medicines. As part of PhRMA’s mission, Billy Tauzin helps ensure that innovative biopharmaceutical research – including vital research for the treatment of MS –thrives, improving and saving lives everywhere. Under Billy’s leadership, PhRMA is also the official sponsor and driving force behind the Partnership for Prescription Assistance (PPA), which is designed to help un-insured and under-insured Americans get the prescriptions they need to survive. Montel Williams is proud to serve as the national spokesperson for this critically important ongoing initiative.

Ok, I'm like a broken record. The Partnership for Prescription Assistance (PPA) does not, I repeat, does not provide medication to patients. It is a big PR machine to help polish up Big Pharma's image.

Now, it looks like Big Pharma and Montel are going to rubbing each other's backs at this little fundraiser...all in the name of Multiple Sclerosis research. Doesn't that make you feel all warm and fuzzy, just like 'Sharing Miracles'?

Is Montel Williams disturbed by Big Pharma?

Controversial behavior by Montel Williams, spokesman for PhRMA's Partnership for Prescription Assistance, may bring unwanted attention to Big Pharma's great PR machine. (h/t Cary Byrd at eDrugSearch Blog)

As reported, the 'Help is Here Express' blew through Savannah Georgia to promote the hope of 'free or nearly free' drugs to qualified individuals. This Orange Bus travels the country promising that it's program helps to save lives...by providing medications to uninsured patients.

Montel Williams has multiple sclerosis, as do I, and has been the visible image of PPArx since . Now I've got my own opinions as to the quality of assistance which Billy Tauzin and his Orange Bus purport to provide needy individuals. [see PhRMA and PPArx: How much are they really helping patients in need?]

Previously, I've given Williams the benefit of the doubt regarding the use of his image to promote a glossed-over PR concoction. I have no doubt wondered as to the level of compensation the Big Pharma lobby may be providing him, but I've let it go.

Last Friday, Courtney Scott, a high school intern at the Savannah Morning News, interviewed Williams for the paper. But apparently her 2nd question touched a raw nerve.

Excerpt from Savannah Morning News online:

Before the rally in Johnson Square, Williams stood for an interview with Scott.

With her second question she asked, "Do you think pharmaceutical companies would be discouraged from research and development if their profits were restricted?"

It was a question she came up with after discussing the issue with her Advanced Placement English teacher.

Williams bristled.

"I'm trying to figure out exactly why you are here and what the interview is about," he replied.

He asked if she suffered from any illness, to which she answered no.

"I'm here as a patient advocate talking about the fact that medications available today are saving people's lives, that's what saving mine and after that, this interview is done."

He snapped his fingers, said thanks and walked away.

"That's an absolutely fair question to someone who represents the pharmaceutical industry," said Savannah Morning News Executive Editor Susan Catron.

Ken Johnson, senior vice president for the Pharmaceutical Research and Manufacturers of America, said the question would have been better directed to himself because he represents the drug industry, and Williams is paid to raise awareness of the drug program.

Yup, that's it. A paid endorser is not in any way responsible for having an opinion on the item being endorsed. However, I believe that any paid spokesperson should be educated and well versed on the subject of that endorsement. Williams could have simply responded that the question presented be directed to the individuals representing Big Pharma itself, not to the star of the Orange Bus Circus.

Later that day, Scott was at the Westin Hotel preparing for an unrelated interview when Williams approached her and delivered a threat. MSNBC reports Montel threatens to 'blow up' teen reporter. Savannah Morning News says Montel 'blows up' at local reporters. My favorite is from eDrugSearch Blog Big Pharma Flack Montel Williams can't take the heat -- from a high school interrogator!

But I guess that all should be excused as Williams offers On-Air Apology to Teen Reporter (AP Press). Scott may take the offer, but she should be prepared to face numerous slick-talking representatives of PhRMA. And representatives are numerous indeed as Big Money is being spent by Big Pharma to represent and educate many of us, including our lawmakers in Congress.

As far as PhRMA's Partnership for Prescription Assistance goes, here's a brief rundown of my personal experience, excerpted from a previous post - Rx Outreach Rocks!

I have spoken before about PPArx and not much has changed.

When I called their number this summer, I was 'assisted' by a man who didn't really speak English at all. In fact, we had to resort to spelling everything in 'alpha, beta, charlie, echo' lingo. Now just think about most medications....that's extremely tedious at best.

Then I waited....and waited...and waited...and finally received their specially-prepared 'package' almost two months later. Ironically, the 'package' omitted applications for programs which I knew were available (I was instructed to contact the program directly for more information) and included applications to programs for which I knew I was not even remotely eligible.

What a waste of time, energy, and resources.

Perhaps PhRMA and Montel Williams need to lower their perceived risk of personal attack by actually doing a better job of providing the information and services which they are promoting.

And to the companies and lobbyists of Big Pharma, please use your resources for real R & D and stop spending so much money, time and energy on 'educating' and 'selling' us of your wonderful intentions, products, and services. We'd all be better off for it.

UPDATE: Prescription Access Litigation discussed Montel and PhRMA on their own blog, sharing my views. Expert below:

So why was Montel so angered by this question, a question which arguably invited a stock answer that PhRMA reps repeat dozens of times a day? It’s not as if the reporter asked “Why doesn’t the pharmaceutical industry make its Guiding Principles on Drug Advertising mandatory and enforceable?” And it’s not as if the reporter asked some obscure question on some obtuse point of, say, patent law or the issue of follow-on biologic drugs. It’s surprising that the industry’s main spokesperson for its patient assistance program was so poorly prepared to answer such an easy question.

But perhaps all this is beside the point. Does it ultimately matter if Montel Williams answers questions about the industry’s priorities and policies, or any questions beyond the mechanics of this patient assistance program?

The answer is, yes, it does. Montel Williams has become one of the most visible spokespeople for the industry. He lends his name and his credibility to the cause of burnishing the image of America’s pharmaceutical companies, and is paid (presumably handsomely) to do so. So it’s entirely fair that he be asked questions about the industry. Although perhaps Ken Johnson, PhRMA’s Senior Vice President of Communications, is the better person to ask this kind of question, Montel is fair game as well — by accepting the industry’s money, and acting as his spokesperson, he has to take what comes with that — including fair questions about the industry’s misplaced priorities.