Wednesday, April 19, 2017

EpicGenetics Announces Major Clinical Study to Locate Genetic Markers Unique to People with Fibromyalgia and Explore New Treatment Approaches



EpicGenetics, with the Assistance of Leading Medical Centers, Expands Clinical Study of FM/a® Test to Diagnose Fibromyalgia, Identify Genetic Markers Unique to the Disorder and Explore Direct Treatment Approaches

- Provides Research Gift to the Faustman Immunobiology Lab at
Massachusetts General Hospital/Harvard Medical School to
Support Research on Fibromyalgia Treatments -

In February of 2016, I wrote a blog on the importance of a well-designed study on fibromyalgia, Are Fibromyalgia Researchers on a Common Path?

In June of 2016, I wrote a blog on my personal experience with the FM/a® blood test providing a detailed guideline on how the process worked for me, and my results.

In an article that will be published soon by ProHealth, I write about the chaos surrounding concrete diagnostic criteria and the disparaging consequences.

Breaking News

And now I am excited to write about new research that could very well provide us with a true understanding of a “disease” called fibromyalgia.

I have been waiting for permission to share what you are about to read.

LOS ANGELES – April 19, 2017 – EpicGenetics, a privately held biomedical company dedicated to improving the diagnosis and treatment of fibromyalgia, today announced that it has engaged the University of California, Los Angeles (UCLA)* and the University of Illinois College of Medicine Chicago (UIC). Both university research centers will be sequencing the exomes of patients to improve the diagnosis of fibromyalgia through the application of the FM/a® Test and to allow EpicGenetics to detect fibromyalgia disease-specific gene markers. Additionally, Bruce Gillis, M.D., CEO of EpicGenetics, has made a research gift to the Immunobiology Laboratory at the Massachusetts General Hospital directed by Denise Faustman, M.D., Ph.D., to continue its robust clinical research regarding a direct treatment for fibromyalgia. 

The FM/a® Test is an FDA-compliant blood test that diagnoses fibromyalgia by identifying the presence of specific white blood cell abnormalities that have been documented to exist in these patients. The FM/a® Test accurately and objectively diagnoses this chronic disorder that afflicts millions of men, women and children.


Committment

I have been committed to understanding and educating my peers on fibromyalgia over the past two decades, but I have never been as excited as I am right now. To be part of a study that has the potential to prove fibromyalgia as a disease with definite treatments is probably the pinnacle of my work.

Dr. Gillis Is Committed

About this announcement, Dr. Gillis told me, “We are hoping to finally bring our understanding of fibromyalgia out of the Dark Ages. Millions of women, men and children suffer from fibromyalgia, yet our understanding and acknowledgement of this as a legitimate medical condition is still so limited and has not advanced in a meaningful way in decades. With the clinical efforts being initiated as part of today’s announcement, we hope to finally change this and, ultimately, we are seeking to provide answers and better solutions for people who suffer from fibromyalgia.”

Follow @TheFMTest on Facebook

What is “Campaign 250?”

According to Epicgenetics, Campaign 250 represents the largest and most ambitious study to investigate fibromyalgia’s genetic origins, as well as develop a treatment protocol addressing the underlying biology of the disease.

Download PDF at
https://drive.google.com/file/d/0B6iFloW6MyVwakttOHFGUWpRNkk/view?usp=sharing


Under contract with researchers from both UCLA* and the University of Illinois College of Medicine Chicago, Campaign 250 will conduct Whole-Exome genetic testing on up to 250,000 patients who have received a positive FM/a® fibromyalgia diagnosis. All direct testing costs will be covered by EpicGenetics**. Based upon the findings of this testing and once treatment protocols have received regulatory and institutional approvals, FM/a® Test positive patients will be invited to participate in a fibromyalgia-specific vaccine clinical trial to reverse the biology of fibromyalgia. The vaccine trial will be conducted in cooperation with The Faustman Lab and Dr. Denise Faustman at the Massachusetts General Hospital/Harvard School of Medicine, the clinical trial will seek to alleviate fibromyalgia-related symptoms…

* The David Geffen School of Medicine at UCLA has been engaged to sequence the exomes of research subjects
**The genetic tests will require a $45 administration fee to cover the processing of the test, which is a $2,500+ cost being provided at no charge. 

Participation

I am anxious to see if I carry the fibromyalgia gene and I am honored to participate in providing information that can make a difference in the lives of people all over the world who live with fibromyalgia. I hope you can join me on this next chapter.




“The mighty oak was once a little nut that stood its ground.”
--Unknown


Additional Information:
FM/a® Blood Test – “How To” – My detailed account of the process

In healing,,Celeste

"Adversity is only an obstacle if we fail to see opportunity."

~ • ~ • ~ • ~ • ~ • ~

Celeste Cooper, RN
Author—Patient—Freelance Writer at Health Central & ProHealth Advocate

Celeste’s Website: http://CelesteCooper.com

Learn more about Celeste’s books at her website or find links here on Celeste's  blog. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others.

All blogs and comments are based on the author's opinions and are not meant to replace medical advice.  





Wednesday, April 12, 2017

Images from the Heart: Unfettering Chronic Pain by Celeste Cooper


Treasures come in many forms and can mean different things to different people. When we discover our treasure—a lost picture, a rare doll, a long sought after coin, or a rock—it brings a twinkle to our eye and provides a calm blanket to our soul. Ahhhh, there it is.

[Excerpt] Cooper, C and Miller, J. Broken Body Wounded Spirit: Balancing the See-Saw of Chronic Pain, Spring Devotions edition, One Man’s Junk Is another Man’s Treasure.


A Treasure in Time

 “What we see depends mainly on what we look for.”
~John Lubbock, author of The Pleasures of Life


Unchained and reclaimed—photography speaks

Each day in the Broken Body Wounded Spirit: Balancing the See-Saw of Chronic Pain  series SpringSummer FallWinter offers a photograph meant to inspire new ways for managing the daily challenges we face. So, it’s only befitting to encourage you to do this exercise.

·        Find a favorite photo and name it. You may not remember all the events surrounding the picture, but you will capture how it made you feel.
·        Write a few words about it or assign a favorite quote that reflects your sentiments.
·        Share it on social media or keep it in a personal journal.


In the world of chronic pain and chronic illness, losing our ability to choose is often the tallest hurdle we face. This choice is entirely ours; we should embrace it.  



Metered, measured, and meaningful, light allows me to capture my feelings in the moment. Finding the right settings is a metaphor to finding the balance I need to move forward each day.


In healing,,Celeste

"Adversity is only an obstacle if we fail to see opportunity."

~ • ~ • ~ • ~ • ~ • ~

Celeste Cooper, RN
Author—Patient—Freelance Writer at Health Central & ProHealth Advocate

Celeste’s Website: http://CelesteCooper.com

Saturday, March 25, 2017

Leg Circulation, Skin Cancer and My Second Pump: Another Three?


The first week in January, I had a squamous cell skin cancer removed from the inside of my foreleg. You could nearly drop a marble in the hole when the cancerous tissue was removed. A vertical incision was done so the edges would come together for healing. Unfortunately, it did not stay that way. I developed blisters, sloughing, excoriation, and eventually an open and deep wound.

Healing Stages

Healing with chronic illness

The surgeon asked me if I had other medical problems besides having thin skin, a history of cellulitis, Raynaud's, and idiopathic edema. Other than having Hashimoto’s, fibromyalgia and ME/CFS I didn’t have an explanation, I didn’t have an explanation. I don’t know if I will ever know why my body reacts this way. I do not take a medication that would cause skin thinning, poor healing or easy bruising. I wonder if the immune factors elevated in my FM/a test might play a role. But, whatever it might be, I needed to manage this wound successfully. As a nurse, I knew it was going to take time and careful attention.

Stagnation and movement

I was sedentary with my legs elevated for two months, and it was grueling. I knew the importance of keeping blood and lymph moving and this is a perfect example of why I write about it. Lack of movement was not only detrimental to my leg healing, it also caused my fibro, arthritis, and myofascial pain to flare. I had to find a way to get the blood and lymph moving for my general health and for this leg!

The second heart pump: a win-win motivation spin

In my search I found many ways to keep circulation chugging along like the little engine that could. Most I already knew but none was as motivating as thinking of my legs as a second heart pump. It made it easy to include mindfulness and visualization with movement and help with mind/ body balance.

*These movement strategies are also helpful for restless leg cramping and more.

Dr. Sam Robbins’ You Tube video gives relatable information on how our legs, as a second heart pump, are important to our health. He gives us three valuable exercises that no doubt help with healing. Once I was able to start my daily walk again, my leg wound began to heal at a faster rate.

A plan

So, how did I go about moving while tethered to a chair?

·        Exercise on the hour.
·        Three repetitions. The number three is my start-low and go-slow strategy. Repetition is not my friend because of myofascial trigger points. So when I progress any routine, I increase the frequency, not the repetitions. Maybe that doesn’t work for you, but whatever you prefer, the goal is to stay movement motivated.
·        When up to the bathroom, I swung my leg back and forth and kicked the air while holding onto something. The “pumping” motion helped return blood and lymph back into circulation. Dr. Robbins inspired me with his information on “rebounding”, which works something like bouncing does for astronauts.
·        In the chair, I did leg lifts, bicycle peddling, flexing and extension of my ankle, etc. These are essential elements for those of us with leg circulation problems. 

This has been a great learning experience for me. Sure, I wouldn’t ask to have this happen again, but it did happen. I practice T’ai Chi, but the conscious awareness I now have for my second heart pump has added a new meditative movement that will help all of my leg problems and I hope sharing my story will do the same for you.

“When confronted with challenge,
I discover my inner strength.”

Celeste Cooper,


In healing,,Celeste
"Adversity is only an obstacle if we fail to see opportunity."

~ • ~ • ~ • ~ • ~ • ~

Celeste Cooper, RN
Author—Patient—Freelance Writer at Health Central & ProHealth Advocate

Celeste’s Website: http://CelesteCooper.com

Learn more about Celeste’s books at her website or find links here on Celeste's  blog. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others.


All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.  

Saturday, March 18, 2017

Steep Drop-offs: Nagging Pain and Our Sixth Sense by Celeste Cooper


Nagging pain and our sixth sense, are you in touch with your body? Do you listen when your body talks?



  • Listen to what our body has to say.
  • Identify new activities, medication, food, or disrupted sleep pattern that could be contributing to our pain.
  • Surrender to our sixth sense.
  • Know the “yeast beast”.
  • SAM-e?
  • Sort the mail of our mind.
  • Identify and pay attention to perpetuating factors.
  • Keep our candles burning?
  • Know our body and mind stress signs.
  • Surrender is not an option.
  • Hellerwork?
  • Kindness is an antidepressant.
  • Medication safety and reporting.
  • Plan-Implement-reevaluate.
  • Watch out for steep drop-offs.
  • … and much more.


"This, the last of Celeste and Jeff's four seasonal devotions books, may just be the best of all. From its practical suggestions to its inspirational quotes and photos, Spring Devotions offers chronic pain sufferers daily bite-sized, easily digestible tidbits that educate, encourage and empower us to take control of our health and our lives. And as someone who likes to jot down personal thoughts in my devotionals, I especially appreciate the extra space for notes. All in all, Broken Body, Wounded Spirit…: Spring Devotions is a valuable asset for anyone living with chronic pain."
~Karen Lee Richards, Editor-in-Chief, Pro Health

Balancing Chronic Pain in Spring

I thank our readers. It is through your encouragement that I am sustained and lifted up daily. Every time I read a particular quote, a comment from you, a research article or advocacy piece, I think of you!

In healing,,Celeste
"Adversity is only an obstacle if we fail to see opportunity."

~ • ~ • ~ • ~ • ~ • ~

Celeste Cooper, RN
Author—Patient—Freelance Writer at Health Central & ProHealth Advocate

Celeste’s Website: http://CelesteCooper.com

Learn more about Celeste’s books at her website or find links here on Celeste's  blog. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others.

All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.  


Monday, March 13, 2017

Ten Lessons from Pain by Celeste Cooper

Ten Lessons From Pain



“There is a difference in living a packed life and living a full life.”
~Celeste Cooper






There is always a lesson in adversity and living with chronic pain and/or chronic illness is no exception. When I sit quietly like the little wren, life’s messages whisper in the wind and fall upon my ear. In these moments I find purpose in the choices I make.  

Ten Lessons from Pain

(1)  Acceptance of what is.
(2) Compassion for the less fortunate.
(3)  Change is not a bad word.
(4)  Humility is a virtue.
(5)  Strength in not surrendering to stressors.
(6)  Commitment to self and others.
(7)  Flexibility to roll with the flow.
(8) Appreciation for things we would otherwise take for granted.
(9)  Empathy, we are on a level playing field.
(10) Patience, our inbox is not supposed to be empty.

[Excerpt, Day Seventy-five]

Each day in the Broken Body, Wounded Spirit series is followed by a thought provoking question and the Spring Edition is no exception. So, what ten lessons have you learned from living with chronic pain and illness?

Spring Edition



In healing,,Celeste
"Adversity is only an obstacle if we fail to see opportunity."

~ • ~ • ~ • ~ • ~ • ~

Celeste Cooper, RN
Author—Patient—Freelance Writer at Health Central & ProHealth Advocate

Celeste’s Website: http://CelesteCooper.com

Learn more about Celeste’s books at her website or find links here on Celeste's  blog. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others.

All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.  

Monday, March 6, 2017

The Painful Truth Documentary Is Here!


As stated in my blog in September of 2015 The Painful Truth: A Book, a Documentary, a Meeting with Lynn Webster, MD, Dr. Webster’s message is irresistible. His dedication to writing the book and producing this documentary (with Craig Worth) is a testament to the spirit and determination he has for people living with pain. He advocates for awareness of the seriousness of untreated or undertreated pain, suicide and addiction. (You can view more information at The Painful Truth Documentary  website.)



Over the weekend, I got an email from Dr. Webster and I am so excited to share it with you.

Dear friends,

I'd like to share some exciting news: "The Painful Truth," the documentary I co-produced with Craig Wirth, was distributed by NETA on March 1 [2017] to all public television stations in the United States. On March 3, it aired on KENW (Portales, NM) and on WXXI (Rochester, NY), and later this month it will air in several other states including Georgia and Montana. I am hopeful that the documentary will air in as most major cities, though this is a decision that is at the discretion of each local station. 

When documentaries like this air on public television, it is common for the host stations to include a discussion with relevant community members. If your local public station decides to air this documentary and you would be willing to make yourself available for a panel discussion, I would encourage you to reach out to your station to offer your participation. It could be a great opportunity to discuss how important it is to Transform the Way Pain is Perceived, Judged and Treated as described in the 2011 IOM report Reliving Pain in America.

Dr. Webster is building a list of the stations and air dates/times for the documentary, which will soon be on the documentary's website, 


Please visit the website periodically to check availability in your area and/or contact your local PBS station. 

The release of this film is timely, and it offers the opportunity to have an open dialogue with our healthcare providers and our communities.

In healing,,Celeste
"Adversity is only an obstacle if we fail to see opportunity."

~ • ~ • ~ • ~ • ~ • ~

Celeste Cooper, RN
Author—Patient—Freelance Writer at Health Central & ProHealth Advocate

Celeste’s Website: http://CelesteCooper.com

Learn more about Celeste’s books at her website or find links here on Celeste's  blog. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others.

All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.  


Wednesday, February 22, 2017

Take Action NOW if you are a Medicare or Medicaid Patient taking Opioids for Pain


CMS to make CDC "Opioid Guidelines" policy

Friday
MARCH 3, 2017

As stated in my article Count Down 2016 – CDC Opioid Prescribing Guidelines and Chronic Pain, there are drastic differences between a policy and a guideline. Is the CDC acting in good faith? Why are the Centers for Medicare and Medicaid Services (CMS) morphing a guideline into a policy, potentially putting millions of taxpayers in harm’s way? They have not been properly represented. Is CMS aware that the CDC did NOT consult with all stakeholders or do an in-depth literature review or follow any of the other policy procedures set by our government? My biggest fear is that the CMS is basing their decisions as though the CDC guidelines are already a policy. They are assuming the statistics they received are unbiased. See Why should we hold the CDC accountable?

The following is an excerpt of an article written by Rick Martin, Guest Columnist for Pain News Network. You can find his letter here. Please comment to the Center for Medicare and Medicare Services.

Change takes work if the pain community is going to stop the Centers for Medicare and Medicaid Services (CMS) from making the CDC’s opioid prescribing guidelines mandatory for millions of Medicare patients, including a ban on daily doses higher than 90 mg morphine equivalent (see “Medicare Planning to Adopt CDC Opioid Guidelines”).

We don’t need CMS and the insurance industry dictating what medication a physician can prescribe for pain or the appropriate amount of medication needed (see"Insurers Behind Medicare's 'Big Brother' Opioid Policy").

Rick asks that we share with at least 10 people and ask them to share with ten more. I decided to share my letter with everyone in my social networks via this blog. Surely, ten of my many friends will keep the ball rolling. Rick gives his permission to use his letter, and you are certainly welcome to use mine.

---Begin---

CMS at this email address: AdvanceNotice2018@cms.hhs.gov

Subject line: CMS Disregard for Governmental Standards in Policy and Procedure-Putting Patients in Harm's Way

To Whom It May Concern:

Let the record show that I, Celeste Cooper, oppose the Centers for Medicare and Medicaid Services’ plan to align its policies with the CDC Guideline for Prescribing Opioids for Chronic Pain. The “Guidelines” did not go through the required process for policy development, and many feel they are biased. We as citizens, taxpayers, and people living with chronic pain were not represented fairly, nor was ALL the literature reviewed or processes followed that were put in place to protect consumers from the consequences of prejudice.

“Guidelines” give physicians and other licensed prescribers the discretion in determining what is right for their patients. However, your policy as presently drafted will make the guidelines mandatory for doctors, patients, and pharmacists. And, what are the provisions for end-of-life and cancer pain?

On June 1, 2016, Dr. Debra Houry, Director of the CDC’s National Center for Injury Prevention and Control, wrote the following:

“The Guideline is a set of voluntary recommendations intended to guide primary care providers as they work in consultation with their patients to address chronic pain. Specifically, the Guideline includes a recommendation to taper or reduce dosage only when patient harm outweighs patient benefit of opioid therapy. The Guideline is not a rule, regulation, or law. It is not intended to deny access to opioid pain medication as an option for pain management. It is not intended to take away physician discretion and decision-making.”

Why would the Centers for Medicare and Medicaid Services (CMS) try to adopt a guideline as a policy? This has the potential to put millions of taxpayers in harm’s way, because they have not been properly represented.

Advocates have shared their concerns over favoritism in the drafting the CDC Opioid Prescribing Guidelines of favoritism in drafting the CDC Opioid Prescribing Guidelines. (See links to reports below.) My biggest fear is that you, the CMS, are basing your decisions as though the CDC guidelines are already a policy that has met the standards of law. You are assuming the statistics reported in the CDC Opioid Prescribing Guidelines are unbiased.

Can you in good conscience implement a guideline as policy when it has not met the test set forth by our government, for and by the people?

Sincerely,

Celeste Cooper, RN, advocate, Medicare person living with chronic pain


Reports:

American Academy of Pain Management Statement to the CDC on the Opioid Prescribing Guidelines
Richard Martin, RPh, U.S. Department of Health and Human Services, June 1, 2016 pdf
https://static1.squarespace.com/static/54d50ceee4b05797b34869cf/t/578e661603596e40a74db59e/1468950040230/Houry+letter.pdf  (accessed thru Pain Network News, CDC: Opioid Guidelines 'Not a Rule, Regulation or Law'
A Former Federal Peer Reviewer’s Analysis of the Draft CDC Guidelines, National Pain Report
Congress Investigating CDC’s Opioid Guidelines by Pain Network News
Shared at the Addiction Treatment Forum
Congress Investigating CDC’s Opioid Guidelines

---End---

BCC:
U.S. Pain Foundation:  contact@uspainfoundation.org 
National Fibromyalgia and Chronic Pain Association info@fmcpaware.org
American Chronic Pain Association:  acpa@theacpa.org  
Alliance for Balanced Pain Management:  info@alliancebpm.org

I also sent a copy to my senators and legislator., which had to be done on their contact form.

Find your senator https://www.senate.gov/
More links can be found on my website via http://www.celestecooper.com/advocate.html

In healing,,Celeste
"Adversity is only an obstacle if we fail to see opportunity."

~ • ~ • ~ • ~ • ~ • ~

Celeste Cooper, RN
Author—Patient—Freelance Writer at Health Central & ProHealth Advocate

Celeste’s Website: http://CelesteCooper.com

Learn more about Celeste’s books at her website or find links here on Celeste's  blog. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others.


Celeste's Website

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