Saturday, February 27, 2016

Urging Congress to Stop the War on Pain

Following is a letter I sent to my congressional representatives and to the President. It started out far more intense, but the character count needed to be 2,000 or less. Feel free to use it as a guide for your own letter. There are links to help you following this letter.

It’s time to end the war on pain and restore compassion. 

The sad fact is that responsible citizens are being demoralized because they take opioids to relieve their pain. They have to pee in a cup, guilty until proven innocent, and the tests accuracies are as diverse as the expense. And who pays for this demeaning accusatory test? The patient does. And, if they don’t succumb, they are sent away to suffer through withdrawal, without help. How is such torturous injustice allowed, even promoted, by our government?  

The number of baby boomers statistically accounts for upsurge in people with chronic pain, and for many of us, opioids are the safer choice. Overuse of anti-inflammatory drugs cause permanent damage to our digestive tract, kill our kidneys, give us heart attacks, and cause death. Alternatives, such as new antidepressants and anticonvulsants, not covered by Medicare, can cause cognitive problems and have many drug-to-drug interactions. Make no mistake, I understand addiction is real; I understand that suspect behavior should be investigated, but the majority of people who take opioids for pain are not at risk. 

Please urge congress to stop discriminating against us. Give patient care back to the physician and quit letting news headlines be a determining factor. Drug testing companies and pharmaceuticals have financial skin in the game using people living with pain as patsies, and most of us will not outlive the research. Untreated pain causes physical stress on the body, and it not only causes harm, it can be fatal. Our government should stop making physicians liable for their edicts. Physicians are damned if they prescribe opioids and damned if harm comes to their patient from not treating their pain. We are real people, with real pain, who deserve to be treated with dignity. We understand we need to be actively engaged in modalities that help us (also not covered by Medicare), and we have earned the right to not be treated like criminals. 

Helpful information and links for writing an advocacy letter.
Helpful links for finding your legislators
Links for advocacy involvement

Monday, February 22, 2016

Introducing Spring Devotions, Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain

“Is the spring coming?" he said. "What is it like?” …
"It is the sun shining on the rain and the rain falling on the sunshine…”

~Frances Hodgson Burnett

As one who lives with chronic pain, I know how important it is to have daily reminders, because as many of us do, I am easily distracted and can lose focus. That’s what inspired me to write this series of books with my co-author, Jeff Miller, PhD. Our readers and reviewers have told us Spring Devotions is inspiring, well written, and offers practical advice in an easy to read format. They appreciate that each day offers visually stimulating photographs thoughtfully connected to inspiring quotes that are carefully positioned to stimulate self-reflection from the thought provoking questions and exercises.  

Spring is just around the corner, so it’s time to prepare for the season of new growth, a time that allows us to plant roots and establish a core from which we can continue to cultivate wisdom and learn ways to treat our body with the care it needs and deserves. 

Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain


The paperback version allows space for documenting personal interactions when applying thoughts and practice and our paperback readers tell us how much they appreciate this. Our Kindle readers tell us they keep their journal close so they can write in it as they address each day. 

Please see what our reviewers have to say, here. And, be sure to check out the Table of Contents too. We want you to know about our books before you buy. While the series does provide opportunities for exploring our spiritual nature, and we feel our readers will find this is important to finding balance, none are Christian Devotionals. We received a poor review from a reader who thought the books were something different. We want to make sure you feel this is the right book/s for you. We want you to feel connected and engaged, inspired and successful in meeting your goals. And we would love for you to write a review for Amazon when you feel it's time to prepare for Summer Devotions, the next in the seasonal sequel. 

Now available in paperback and Kindle at Amazon UK and Amazon Canada

Also available at Barnes and Noble in paperback.

Friday, February 12, 2016

Are Fibromyalgia Researchers on a Common Path?

This is literally, at least, a million-dollar question, are fibromyalgia researchers on a common path or are they like "Two mice in a maze of indecision?” Here is my own non-award winning story.

Two mice in a maze of indecision. The first mouse, Must Mooli, is frantically navigating the maze because she knows if she finds the bell at the exit and thrashes it's pull back and forth cash will drop like confetti. Must Mooli is eager to receive the reward for the research she does. Shouldn't she be? After all, she needs the money to feed her family. Her moral duty is influenced by the basic needs of those she loves. But, she has competition, Bamboozled Barley, mouse number two. He is navigating the same maze using a different strategy because he wants to pick up studies along the way, studies he can replicate. You see, Bamboozled Barley is convinced that he can be an award-winning researcher heralded for his scientific breakthrough, discovering a biological test or even a cure for fibromyalgiaBut, doesn’t he need to ring that bell too? Sure he does, but he believes he can accomplish more with his strategy. His bell may not be the same one Must Molli seeks, it could be in a different location or in another maze all together. So, he stumbles from side to side, following every path, seeking what he needs to bring him the recognition he desperately wants. Who do you think makes it in the end? Does it matter? Your about to find out.

Where Is the Bell?

From where does the money come? Will it miraculously fall from the sky? And, what research proposal, and by who, is it granted?  Must Mooli and Bamboozled Barley know that maze only too well. We don't know their process, but we can speculate on who provides funding. It either comes from some private entity for some type of secondary gain, directly or indirectly, or from a public funding source that our tax dollars support. We would hope that public funding has one goal, to find a cause, treatment, or cure for diseases that affect people. One such entity here in the U.S. is the National Institute of Health.  Yet, even public entities are fraught with controversy. Cort Johnson at Health Rising gives us a glimpse of what can happen. 

Just like Must Molli and Bamboozled Barley, we are all motivated by different things, and as our bells peal to a different melody, so do opportunities. 

The Facts about Replication

Bamboozled Barley knows the value of study replication and so does Kim Penix, blogger at Grace is Sufficient. It was after reading about her experience as a fibromyalgia study participant that I was inspired to write this blog. She had this to say about the process and the value of study replication.

...The process is even more complicated because medical journal publications tend to only print the new and exciting finds. But unless those studies can be replicated repeatedly and consistently, you can’t be 100% positive. What happens then is when another study is performed, and they get different results, you may never read about it in a journal because it isn’t new and exciting. This leaves doctors without the continued information...”
So, how do studies get published in reputable journals? The study is written up and all the important criteria are examined by peers in that field of study. For instance, we would expect the study Kim participated in to be published in a respected rheumatology journal like Arthritis and Rheumatism or Arthritis Care and Research. 

What is Peer Review?

Peer review is a rigorous process in which scholarly articles, in this case studies, are evaluated by the scientist's peers. They look at content, validity, methods of research,  and so on. Usually it consists of more than one reviewer and includes editors of the journal who either accept or reject the article for publication. I wonder if there is peer bias (who you know), because some published studies are certainly suspect.  But, just like Must Mooli and Bamboozled Barley, motivation for publishing or rejecting a study is often influenced by what will improve circulation of the journal. We wish it weren't so for the reasons Kim describes, but it is the truth in our world as we know it today.

The Diagnostic Criteria and Participant Screening

One would think all scientists would use the same criteria for screening fibromyalgia participants, but that's not what happens. Scientists must reveal how they identified their participants, but the criteria is not consistent. And, sometimes co-occurring conditions are not ruled out, which can vastly change the outcome, or add so many variables to the study that the construct is damaged. 

This is of great concern to me because of the inconsistencies in the newer criteria. I have expressed by concerned to the NIH  and the American College of Rheumatology (ACR) as far back as 2010. The criteria must be prudently applied, but first we need criteria that the experts can agree to use. For instance, “The Preliminary Proposed (Wolfe, et al. 2010) and Modified Criteria (Wolfe, et al.2011) is NOT approved by the ACR (a response letter to me from the ACR), and rheumatologists around the world have been critical of it.

It's no secret that I favor Dr. Robert Bennett, et. al. criteria and you can read more about it on my website, Alternative Diagnostic Criteria for Fibromyalgia.  The ACR, the CDC, and the NIH understand the significance of fibromyalgia occurring with other painful disorders, as Dr. Bennett suggests. This is contrary to Dr. Wolfe, et al. (referenced previously). Are you starting to get the picture? Our researchers need criteria they can depend on for all the reasons I listed in my letters to the NIH and the ACR. And yet, six years later not much has changed.

Is It Possible to Collaborate?

I  wish the researchers could find a way to collaborate. I wrote a letter to a couple of them, Dear Dr Albrecht Dr Behm Dr Ge Hy and Dr Orlander –Are These Studies related, because I wanted to see if I was interpreting their research correctly and if they saw any similarities on they could use to collaborate. Unfortunately, I did not get a response. 

Because of technology, we can collect very important data, but some of our privacy laws prevent that. Sure, it's okay for Google to know our every desire; it's okay for foreign offshore health insurance billing companies to have every identifier we give our provider, which are NOT subject to HIPPA privacy laws. It's okay the very laws created to protect our health records are keeping scientists from valuable information. No it is not!

So, I must conclude, it's possible that my little story about Must Mooli and Bamboozled Barley could be more fact than fiction. Resources, physical location of scientists, and motivation are significant factors. But, I am hopeful. Make no mistake, there are people working to find a way to collect  data without breaking laws. For every obstacle there is opportunity.  Feel free to download the PAINS policy brief #7 from my website. 

In a separate blog, I will let you know about my search for replicated studies. And I hope to get the chance to share more with you about PCORI, which is ALL about collaboration and involving the patient. Never give up hope, the past is how we learn and the future is full of possibilities. 

~ • ~ • ~ • ~ • ~ • ~

"Adversity is only an obstacle if we fail to see opportunity."  
Celeste Cooper, RN
Author—Patient—Health Central Chronic Pain ProAdvocate

Celeste’s Website:

Learn more about what you can do to help your body function to its potential in the books you can find here on Celeste's  blog. Subscribe to posts by using the 

Celeste's Website

Celeste's Website
Click on the picture