Millions of people wake up each day to pain and other symptoms from diseases and conditions that have not yet been diagnosed. Marianne Genetti is trying to do something about that. She founded "In Need Of Diagnosis," a non-profit organization committed to helping undiagnosed patients find appropriate doctors and resources.

Genetti plans to work with other nonprofit groups to create a database of symptoms. It's hard to believe that in this age of supercomputers, someone hasn't already done something like this. But in fact, there's nothing like it anywhere.

With all the billions of dollars spent on medical care and research each year, very little of it goes into diagnosing. And that's despite the fact the about forty percent of all illnesses are misdiagnosed. According to an article in the Journal of the American Medical Association, fatal illnesses are misdiagnosed in 20 out of every 100 cases.

In May of 2008, the National Institutes of Health launched an Undiagnosed Diseases Program to study some of the most difficult undiagnosed cases. As it only accepts 50 to 100 patients per year, it does little to address the crying need for proper diagnosis for millions of people in the United States alone. Marianne Genetti hopes her organization will help fill the gap by collecting information that may advance the medical communities knowledge.

Genetti was motivated to start In Need Of Diagnosis after her own struggle with a serious and undiagnosed lung problem. She recognized the need for a national database of symptoms, as well as the need to encourage undiagnosed patients to be more aggressive in asking their doctors for more tests, information and input. In Need Of Diagnosis is a young organization. It is in need of volunteers and donations. If you are in need of help and support in finding a proper diagnosis for chronic pain or any other health-related issue, I encourage you to visit In Need Of Diagnosis at their web site, http://www.inod.org

### Bonnie Boots publishes Pain Health News to provide information and motivation to people living with chronic pain.  You can stay in touch with her by typing your email address into the subscribe box in the upper right corner of this page.

You're not alone. Millions of people need help. And millions are being denied help because they have the misfortune to be without adequate insurance or private funds. And for that sin, they are made to suffer.

I know what it's like to be disabled and denied adequate care. In 1989, I was the innocent victim in an auto accident caused by a driver that sped away. As we waited for the ambulance, my husband stroked my hand and assured me, "Don't worry about anything. We've got good insurance."

Months later, having overcome two incompetent doctors who misdiagnosed and mis-treated me, I finally found a doctor that sent me for the right tests, made the right diagnosis and prescribed the right therapy. Each day, for four weeks, as I entered the therapy clinic, that doctor would ask me how I was doing and encourage me. I felt he cared. And after being abused by two careless doctors, that made a world of difference to me.

But on the fifth week, when I entered the clinic, the doctor, seeing me, turned abruptly away. I called after him, but he went into his office and shut the door.

When I approached the desk to sign in, a clerk came out and told me she needed to speak to me privately. In her office, I was told that my health insurance provider had declared bankruptcy. If I wanted further care, I had to make a cash deposit of fifty thousand dollars. I was stunned. She was emotionless. It was made perfectly clear to me that my relationship at that clinic was over.

Back home, I called the number I had for my insurance company. The woman that answered that number told me XYZ Insurance Company was no longer in business. A brand new company, XYZ-Z. was now enthroned. At the same address. Using the same employees. And the same phone number. In fact, everything was the same except one thing–I no longer had health insurance. And because I didn't have the cash, I no longer had medical care.

Keep in mind, please, that I had done everything society told me to do. I worked hard. I took care of my health. I paid through the nose for good health care, not a bare bones policy, but the high-priced spread that covered everything. But when I finally needed that policy, they pulled the rug out form under me, even while they went on selling insurance from the same building using the same employees.

That is why the United States needs to provide national health care–the same level of national health care that every citizen of every other industrialized nation in the world receives. And I'm not the only one that thinks so. I've spoken with many health care professionals who agonize over their inability to help good people heal and return to a quality of life.

Over at Salon, you can read an article by Ford Vox, an M.D. who works as part of a team that, as he describes it, tries "to put lives back together after disabling injury and disease." In his article, Dr. Vox describes the horror of having the resources of healing at hand, but not being able to apply them to people whose insurance has lapsed or been used up, or to people unfortunate enough to live in states with no commitment to adequate health care.

Millions of people on both sides of the table, pain patients and health care professionals alike, are clamoring for health care reform, for a system that, as Dr. Vox says, "does not trample on basic human rights." Add your voice to the clamor. Let your elected officials know that health care is a top priority issue for you, and that you will not sit back quietly as they once again let insurance companies thrive while we suffer.

Here is where you can contact your representatives: HOUSE http://www.house.gov/writerep/ SENATE http://www.senate.gov/ WHITE HOUSE  http://www.whitehouse.gov/contact/ And while you're at it, use the comment box to add your voice to this blog. The more you speak up, the more likely you'll be heard!

### Bonnie Boots publishes Pain Health News to provide information and motivation to people living with chronic pain.  You can stay in touch with her by typing your email address into the subscribe box in the upper right corner of this page.

In March of 2009, Doctor Scott S. Reuben, a prominent anesthesiologist and former chief of acute pain at Baystate Medical Center in Massachusetts, was accused of faking studies that were published in several anesthesiology journals betweenn1996 and 2008.

Dr. Reuben had been a paid spokesperson for Pfizer and the company paid for some of his research. Pfizer's Celebrex and Lyrica, as well as Bextra and Vioxx, which have since been withdrawn from sale-received positive reports from Dr. Reuben. He also claimed positive findings for using the antidepressant Effexor XR, from Wyeth, as a painkiller.

Wyeth said it wasn't aware of any financial relationship between its company and the doctor. In a press release, Pfizer claimed it had no prior knowledge of Dr. Reuben's alleged actions and were disappointed to learn of the accusations.

Dr. Reuben, now 50, has been accused of falsifying data for more than a decade. In one case, he forged the signature of another doctor on some reports. The journal Anesthesia & Analgesia is reporting articles containing the questionable data go back to 1996.

Reuben had been a high profile and much-respected researcher. He championed the use of anti-inflammatory drugs known as COX2 inhibitors and claimed his studies showed reduced post-surgical pain and dependence on steroids and addictive drugs.

Dr. Reuben's studies affected the type of pain relief offered to millions of people around the world. Because his data was so widely relied upon by other researchers, the integrity of an untold number of related studies is now called into question. Clinical trials of drugs that relied on data from Reuben's work may have to be repeated as a result of this scandal.

In addition, many doctors relied on his studies when determining what prescriptions to write for their patients. Two of the COX2 inhibitors he reportedly falsified favorable data for, Pfizer's Bextra and Vioxx, became some of the most widely prescribed pain killers. They were removed from the market in 2006 after evidence showed they increased the risk of fatal strokes and heart attacks. Vioxx was further discredited when it became known that some studies signed by professors and medical researches claiming they had written the findings were actually written by Merck employees.

Fraud in the handling of drug research affects everyone participating in the use of prescriptions for health care, both medical professionals and patients. It is undoubtedly troubling for doctors who must rely on published studies to stay informed about new developments in pain care. It's troubling and also dangerous for patients who rely on their doctors.

I was personally involved as a patient advocate for an elderly woman whose doctor suggested, after reading a study, that she try Vioxx for her arthritis pain. During a nightmarish two-month trial of the drug, she suffered from many side effects. Her condition became so severe it was necessary to place her in a nursing home for the last month. When her doctor finally ordered her to stop taking Vioxx, all negative symptoms withdrew and she was able to return to caring for herself in her own home. Her doctor, a deeply caring practitioner, told me he had a hard time assessing that Vioxx had been the problem "because all the reports on it have been so favorable."

As a pain patient, you must always be aware that studies can be faked and doctors, no matter how well intentioned, can be misguided. They can also make mistakes. Always keep in mind that YOU are the only expert on your body and it's condition. If your body is not responding well to a drug, that's not a fault in you. That's the wrong drug–no matter what any study says.

### Bonnie Boots publishes Pain Health News to provide information, motivation and understadning to people livingw ith chronic pain. To keep in touch with her, use the subscribe form in the upper right corner.

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* Do you have feelings of inadequacy?

* Do you suffer from shyness?

* Do you sometimes wish you were more assertive?

If you answered yes to any of these questions, ask your doctor or pharmacist about Margaritas.

Margaritas are the safe, natural way to feel better and more confident about yourself. Margaritas can help ease you out of your shyness and let you tell the world that you're ready and willing to do just about anything.

You will notice the benefits of Margaritas almost immediately and with a regimen of regular doses you can overcome any obstacles that prevent you from living the life you want to live. Shyness and awkwardness will be a thing of the past and you will discover many talents you never knew you had.

Stop hiding and start living… with Margaritas.

Disclaimer: Margaritas may not be right for everyone. Women who are pregnant or nursing should not use Margaritas. However, women who wouldn't mind becoming pregnant are encouraged to try it. Side effects may include: * Dizziness, nausea, vomiting, incarceration * Loss of motor control * Loss of clothing * Loss of money * Headache * Dehydration * Dry mouth * And a desire to sing Karaoke

WARNING: * The consumption of Margaritas may make you think you are whispering when you are not. * The consumption of Margaritas may cause you to tell your friends over and over again that you love them. * The consumption of Margaritas may cause you to think you can sing.

Consult your doctors before using anything.  It makes them feel needed.

### Bonnie Boots publishes Pain Health News to deliver information, advice , motivation and sometimes a touch of humor to people living with chronic pain. Stay in touch with her by using the subscribe form in the upper right corner.

As reported in The Journal of Pain published by the American Pain Society, researchers in a Chicago-based program set out to determine how effective mind/body self-care techniques were in helping adults cope with chronic pain.

The study documented the experiences of seventy-eight people age 55 and older as they used the internet to access a variety of online pain management tools. Researches assessed changes in pain intensity as well as the subject’s ability to better manage their pain.

The subjects in the study were divided into intervention and comparison groups. The intervention group used online tools at least once a week.

A website the intervention group was given access to guided visitors through such pain coping techniques as deep breathing exercises, relaxation techniques, journaling about their feelings and experiences, creative visualization exercises and positive thinking exercises.

Online instructional materials such as videos, worksheets and illustrations guided the subjects through the various modules in the online program and encouraged them to participate in developing coping strategies.

At the end of the study, researches evaluated the experiences of the intervention group and the comparison group. They concluded that the intervention group using online tools showed significant improvements in pain intensity as well as the level of interference in daily activities the subjects attributed to pain.

Researchers also concluded that the subjects using online support tools showed improved confidence in their ability to use self-care techniques for managing their own pain.

The researchers concluded that online intervention offers a viable means of empowering older adults with chronic pain to learn self-care techniques and integrate those techniques into their daily lives.

From my own experience in organizing self-help support groups, I know that the average person suffering chronic pain gets very little help in learning to manage it. My hope is that this study will lead health care providers and insurance companies to develop online programs teaching pain management techniques and provide easy and affordable access to them.

### Bonnie Boots publishes Pain Health News to provide information and motivation to people living with chronic pain.  You can stay in touch with her by typing your email address into the subscribe box in the upper right corner of this page.

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But recently, some states have been taking steps to limit the sort of largesse that drug companies can pass to physicians. In Minnesota, for instance, the state ruled that pharmaceutical salespeople could not give more than $50 in free food to doctors per year. One pharmaceutical sales rep I know in here in Florida sat down and cried buckets when she saw laws changing. “There goes my career!” she cried. “Without freebies, I won’t be able to get my foot in the door at most medical offices.”

Her fears, it must be admitted, were justified. A study has shown that doctors in Minnesota are rejecting pharmaceutical sales visits more than anywhere in the country.

I didn't have to be psychic to  see that pharmaceutical companies would ferret out new ways of making sure their pill is the drug of choice when a doctor sits down to write a prescription. And today, I got my first glimpse of one of those new ways. I just saw a television ad for the Orencia Promise Program from Bristol-Myers Squibb. Orencia is a new drug for people suffering from moderate to severe Rheumatoid Arthritis.

In a nutshell, the Orencia Promise Program is a co-pay program for new Orencia patients with private insurance. The program will pay the full co-pay for Orencia for the first 6 months of therapy. In addition, if you're not satisfied after 6 months, the program will pay your first co-pay of another RA medicine, up to $500 (Some restrictions and exclusions may apply. If you're interested in the Orencia Promise Program click their name to visit their web site.)

On the one hand, I’m pleased to see pharmaceutical companies throwing their money at patients for a change. While they’re at it, how about inviting us to some of those fine restaurants and weekend trips to Disney World for “educational seminars”? I could use a new laptop, too!

On the other hand,  I’m worried that bribing —err, “rewarding” patients could turn out to be an even bigger threat than the old method of rewarding doctors. With the world economy swirling down the toilet,  how many RA patients will be tempted to change therapies just to get their prescriptions—any  prescriptions—free for 6 months?

Doctors are influenced by their patient’s requests.  “Naturally I want patients to be involved in their own health care,” one doctor told me. “If they express interest in a drug with potential benefit and I see no contra-indications, I’m inclined to let them have a trial of it.”

But this tactic of throwing money at people to get your drugs in play is the same old double-edged sword. It’s only that this time, the sword is being passed to the patient. As a pain patient, what’s your take on this issue? Use the comment box below to state your opinion. Meanwhile, I'll be on the phone to Bristol-Myers Squibb to see if that link I provided to their website  is worth a new laptop to them.

### Bonnie Boots recovered from totally disabling chronic pain, but still has occasional days when she feels like hell. That's why she publishes Pain Health News, providing information, motivation and conversation to people challenged by chronic pain.

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