Update: Fibromyalgia FM/a Blood Test and EpicGenetics Landmark Clinical Research Efforts

Download the Brochure

According to a spokesperson, the genetic studies on fibromyalgia are well underway – with the assistance of the University of California, UCLA, and University of Illinois at Chicago. There has been a strong response from the fibromyalgia community in participating in these efforts. As you may recall from my blog, The FM/a® Blood Test and Campaign 250: Participation in Fibromyalgia Exome and Treatment Study, EpicGenetics is allowing up to 250,000 participants in this research effort and the opportunity to enroll will likely end later in 2018 to allow for the analysis of the genomic surveys and results announcement. So, if you haven’t already, I encourage you to look into getting the FM/a test now, so you can be part of this important research. Participation  in the research first requires a positive FM/a® Test, and if you do receive a positive test result, you will receive a direct communication from EpicGenetics inviting you to participate.

Researcher investigating possible fibromyalgia vaccine

Additionally, the clinical trial set to take place at Massachusetts General Hospital to evaluate the BCG vaccine as a direct, effective treatment continues to progress toward enrollment and trial initiation. Plans are to initiate the trials during the first half of this year. You can read more about this breaking news in my blog, EpicGenetics Announces Major Clinical Study to Locate Genetic Markers Unique to People with Fibromyalgia and Explore New Treatment Approaches.

Additional:

Peer-reviewed Medical Publications

Researchers Seek to Find Cause of Fibromyalgia via Genetic Testing

Thank you for taking this journey with me. 

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

http://www.CelesteCooper.com

Lymphatic Massage, Clogged Drains and Fibromyalgia Pain

In 2015 investigators Yuan SL, Matsutani LA, and Marques AP noted lymphatic massage as the most helpful type of massage for fibromyalgia. So what is lymphatic massage and why is it important to our health?

The lymph system

To understand why manual lymphatic massage is beneficial for those of us with fibromyalgia, we must first understand how it works.

Courtesy PrintableDiagrams.com via Google

The purpose of our lymph system is to maintain fluid balance in our body’s tissue. Lymph vessels carry lymph fluid around our body and through our lymph nodes where cellular trash is filtered and collected. Special blood cells, called macrophages, then digest the cellular debris before recycled lymph fluid is returned to circulation as plasma, the liquid part of blood.

Unlike our blood circulation, our lymph system is passive. This means circulation of lymph fluid depends solely on contraction of surrounding muscles during exercise, body movement, deep breathing, and properly functioning organs. When movement is disrupted, excessive lymph accumulates leading to swelling, called edema, and a buildup of toxins in our tissue. 

As a nurse and a patient, I know the important role of the lymph system. I have idiopathic edema—a fancy way of saying “yes, you are swelling, but we don’t know why”. In 1994, Deodhar AA, Fisher RA, Blacker CV, and Woolf AD concluded that rheumatologists should be aware of fluid retention syndrome and fibromyalgia. I couldn’t find any recent data on this. But, I suspect this type of swelling in fibromyalgia could be due to immune system dysfunction as identified by the FM/a® blood test. Because of this long-standing issue, I had to get creative when recovering from skin cancer surgery on my leg. I knew I needed to optimize my already damaged immune system so I could heal.

For any number of reasons, our lymph system sometimes needs help to reduce swelling. That’s where lymphatic massage comes in.

What is lymphatic massage?

Lymphatic massage, also known as Vodder Lymphatic Massage, was pioneered by Dr. Vodder it in the 1930’s for treating chronic sinusitis and other immune disorders. The therapist manipulates the body externally through massage, which opens lymphatic ducts and helps reduce stagnation and generalized swelling. Lymphatic massage encourages the flow of lymph fluid through muscles and tissues and into the lymph system for circulation. 

Manual Lymph Drainage (Vodder Technique) massage requires special training. You can find a therapist at Dr. Vodder School of International.

*There are some health conditions where massage should be avoided.

Additional reading:
Exercise and the Forgotten Lymph (from my website)

Leg Circulation, Skin Cancer and My Second Pump?

BODY-WORK: The Anatomy’s’ Labor of Love

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.  

Casting Light on the Shadow of Fibromyalgia: Finding the cause

Radiating the Shadow of Light

As suggested in my article for ProHealth, there is a problem with research on fibromyalgia. It is all over the place. The reason for this is partly due to how research is funded—sad, but true.

Drug Research

Several drugs have been suggested for treating fibromyalgia  but are they helping?

The FDA *Voice of the Patient (October 2014) said:

“According to the polling, nearly all in-person and web participants reported taking or having taken a prescription medication to treat their fibromyalgia symptoms. Prescription drug therapies were described as having widely varying degrees of effectiveness, and many participants noted limited benefits or decreased benefit over time. Additionally, even if effective, many participants described that they could not sustain treatment because they were unable to tolerate their side effects.”

*A polling of FDA approved Lyrica®, Cymbalta®, Savella® and other commonly prescribed medications.

 

Also in 2014, The Cochran Library database said while it seems helpful in those who tolerate it, the number who benefit from Pregabalin (Lyrica) is very small. Only one person in ten will have any benefits. (Pregabalin for pain in fibromyalgia in adults, accessed April 29, 2017) That is underwhelming evidence compared to the reported clinical trials on which the FDA based their approval.

Getting Unstuck

In our books I write about the importance of critical thinking and problem solving, i.e. determining what we think we want or need then go about finding ways to achieve it. But, when we change the goal, or even our interpretation of the goal, so changes the way we get there. Simply masking our symptoms so we can learn to live with it isn’t a lofty goal to me. Instead, we should be looking at the cause, the necessary step to finding a cure. That said, I support any medication, treatment, or therapy you and your doctor work together to find, but we can’t get stuck in thinking that’s all there is. We need to know how to treat fibromyalgia as a disease and manage it as we do diabetes, thyroid disease, etc.

The Biology of Body Matter

I began reviewing research, commentaries, and reports on fibromyalgia in 2001 when I first started writing our book, Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection, 2010. And, I have seen evidence in small studies and large that fibromyalgia is biological.

As years pass by, we see a recurring theme regarding the hypothalamus-pituitary-adrenal (HPA) axis involvement in fibromyalgia. And as we advance, we learn more about how this might work. You see, the HPA axis is constantly recalculating based on stress signals from the mind or body. For instance, if it receives feedback that there is an imbalance in the immune system this intricate system activates to restore order. 

Immune Cells

Behm FG, et al. found specific immune cells in FM using a specific method. That is what led to the FM/a® blood test. This finding doesn't necessarily negate previous studies on the HPA response in fibromyalgia. Instead, this and other “Peer-reviewed Medical Publications” (below), support immune system involvement in fibromyalgia, which could be upsetting the body's ability to achieve balance. When we treat the root cause in any disease, it makes the job of the HPA much easier.

Newsworthy Hope for the Future

Dynamic, well-respected scientists and medical research institutions will be collecting data from those of us who have tested positive with the FM/a® blood test. 

“We seek a potential set of explanations for why FM patients have their immunological abnormalities and that is why we have contracted with the genomic facilities at two major university medical centers(University of Illinois and UCLA) so we utilize their immense expertise and databases.” (Dr. Bruce Gillis, personal correspondence)

It’s important that you know this will “Take Time”. This is the first step to help scientists find treatment that is specific to the cause of fibromyalgia.

“Things Take Time (TTT).

Get this engraved on your watch crystal or the back of your cell phone.

The Grand Canyon started as a run-off problem.”

~Jeff Miller, PhD (My co-author)

You can read about the BREAKING NEWS shared in my blog, EpicGenetics Announces Major Clinical Study to Locate Genetic Markers Unique to People with Fibromyalgia and Explore New Treatment Approaches.

Participation 

The FM/a® test “Campaign 250” is devoted to answering the basic three questions: Do I have it? What caused it? How do I treat it? If you would like to be one of the 250,0000 participates in this important research, you first need to have the FM/a® test. Start the process at http://fmtest.com/ and contact them if you can’t find answers to any of your questions. They are a wonderful bunch of folks. And, you can read my blog, FM/a® Blood Test – “How To” and My Results, which clearly explains my experience. 

In hope and healing,,Celeste

Related reading:

·        FM/a® Blood Test – “How To” and My Results.

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

Following are downloadable peer-reviewed medical publications: (accessed, 2017)

BMC Clinical Pathology-Unique immunologic patterns in fibromyalgia

Rheumatology International-Cytokine and chemokine profiles in fibromyalgia, rheumatoid arthritis and systemic lupus erythematosus: a potentially useful tool in differential diagnosis

Journal of Innate Immunity-Long-Lasting Effects of BCG Vaccination on Both Heterologous Th1/Th17 Responses and Innate Trained Immunity

Molecular Immunology-Induction of transcription factors, miRNAs and cytokines involved in T lymphocyte differentiation in BCG-vaccinated subjects

PNAS-Bacille Calmette-Guérin induces NOD2-dependent nonspecific protection from reinfection via epigenetic reprogramming of monocytes

The Journal of Immunology-Bacillus Calmette-Guérien (BCG) Revaccination of Adults with Latent Mycobacterium tuberculosis Infection Induces Long-Lived BCG-Reactive NK Cell Responses

Vaccine-Complex cytokine profiles induced by BCG vaccination in UK infants

Vaccine-Interferon-gamma production by mononuclear cells in BacilleCalmette-Guérin-revaccinated healthy volunteers predicted long-termantimycobacterial responses in a randomized controlled trial

"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.  

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

Press release:

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.

Full press release

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

Download the brochure

Learn More, including taking the first steps, information about the FM/a® Test and Frequently Asked Questions.

(Signature line appended July 2018)

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

http://www.CelesteCooper.com

~ • ~ • ~ • ~ • ~ • ~

Learn more about Celeste’s books here. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others. 

The FM/a® Blood Test – "How To" and My Results

As many of you know last month  I wrote, “Blood Test for Fibromyalgia: FM/a Test® Is Real, QA” for fibromyalgia awareness. My opinions for that article are based on research review and news articles surrounding the test.

As promised, I will now share with you my personal experience. 

My test results are in!

GETTING STARTED

Following are the steps I took.

·        I went to https://TheFibromyalgiaTest.com/ scrolled to the “click me” button in the “Ready to Get Started” area at the bottom of the page.

·        The next page - The FM/a®  Test must be authorized by a licensed physician. My rheumatologist ordered the test for me.

*Note: If you do not have a physician, please call 310-277-4600, M-F, 9am-5pm (PDT) and we'll help you find a fibromyalgia-friendly doctor at no charge. 

·        I printed the Physician’s Authorization Form, filled out what I could, and left it at my doctor's office for him to sign. My doctor's nurse, who is a peach, then faxed it to the number on the form.

·        Next, I answered "Yes" to 11 of the 12 questions. *You must be able to answer yes to at least four questions.

·        I filled out the “Customer/Insurance Information Form”.

DETAILED INSTRUCTIONS

Within a few days, I received a phone call from the coordinator letting me know my insurance provider authorized coverage (as are many). She answered all my questions and reassured me the test kit would include step-by-step instructions. (Something very important to those of us with fibrofog). 

Next:

·       The kit arrived within a few days, along with a prepaid Fed Ex bag.  

·        Paperwork included physician contact information, a medication list form, and a patient information sheet. (Because my rheumatologist was ordering the test, I was instructed to put the physicians signed order sheet in with the blood sample or to have my doctor’s office fax it to them, which in my case was already done.)

*Note: The medication form instructs, “Do not take the following drugs for 5 days prior to having your blood drawn, steroids, anti-cancer treatment drugs, or anti-rejection transplant drugs”.

·        I prearranged the Fed Ex pick up for the same day my blood was drawn.

·        Quite helpful is the specimen submission checklist because it has specific instructions on what to include with the specimen, handling and packaging of the tubes, Fed Ex copy, a contact number if you have questions, and the phone number for Fed Ex.

·        The specimen must be received within 24 hours after the blood is drawn.

·        DO NOT draw blood on Friday because "Overnight" express will not deliver until Monday, which the coordinator had told me during our phone conversation. 

I HADN'T THOUGHT OF THAT!

I hadn’t thought about all of the things that are included in the cost of the test.

·        Arranging for a phlebotomist to collect blood samples.

·        Pre-authorization with your insurance carrier.

·        Phone consultation regarding instructions and concerns.

·        Working with physicians, or finding a physician if necessary.

·        All supplies.

·        Expedited mailing.

·        A specialized lab for running the results. 

·        Dr. Gillis being personally available to patients to answer any questions. (That’s unheard of these days.)

MY RESULTS 

I mailed my specimen on a Wednesday, and the results took about a week.

Certainty

FM/a®’s test results are based on a 1-100 scoring system; patients with active disease activity score 51 and above. (My personal information was purposefully covered.)

  

MY SCORE = 96

“FM/a® is a multi-biomarker-based test which concerns immune system white blood chemokine and cytokine patterns. Patients with fibromyalgia have a significantly dysregulated pattern regarding these proteins.”

The FM/a® test gives me concrete objective evidence that I can share with all those on my healthcare team. No more questioning that my symptoms are due to a biological problem.  If you have read Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection,  you know how important it is that I make sure all my doctors include the report in my medical records. 

It is equally reassuring to know that I contributed to changing the way fibromyalgia is perceived.  

NOW WHAT?

After decades of literature review, maintaining a website and blog, contributing in the past as a fibromyalgia expert at Sharecare, and writing for ProHealth and Health Central, my work and my diagnosis are validated. Will I continue to follow my own advice for living with fibromyalgia and the overlapping conditions I experience? Yes, absolutely. The coping strategies we discuss in our books are paramount to emotional, mental, and spiritual healing for any chronic illness.

THE CONCLUSION IS THE BEGINNING

Pioneers are those who trudge forward among adversity. Because of Dr. Gillis, Dr. Wallace and the many devoted people involved in this endeavor, as Dr Kevin White said in his book, Breaking Thru the Fibrofog: Proof that

FIBROMYALGIA IS REAL!

With the FM/a Test® available to researchers, there leaves no margin for error in identifying study participants. And, like HIV and AIDS, one day the consequences of fibromyalgia will be arrested.

In healing and hope, yours truly, Celeste

Additional reading:

• About the FM/a Test 
• A Year of Fibro: Musings, Writings, and Opinions, includes links to all my freelance writing, blogs and information from my website on fibromyalgia. 
• How is the FMa test different at looking at cytokines-Pain News Network

(Signature line appended July 2018)

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

http://www.CelesteCooper.com

~ • ~ • ~ • ~ • ~ • ~

Learn more about Celeste’s books here. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others.