Showing posts with label Research. Show all posts
Showing posts with label Research. Show all posts

Tuesday, September 18, 2018

Chronic Pain: Does Sex Matter?




SIMPLY BECAUSE WE ARE WOMEN

September is chronic pain awareness month and a perfect time to recognize that when it comes to chronic pain, women are treated differently than men.

DISCRIMINATION

As reported in my article Women, Pain, Bias, and Discrimination, written for Health Central, there is a century’s old bias against women, and I am sorry to say not much has changed in the twenty-first century. Our pain remains misunderstood, mistreated, undertreated, and often times, untreated all together—simply because we are women.

The Wandering Womb = Wandering womb was the belief that a displaced uterus was the cause of many medical pathologies in women. The belief originates in the medical texts of ancient Greece, although it persisted in European academic medicine and popular thought for centuries. Wikipedia (accessed, September, 2018)

The National Pain Strategy tells us bias, stigma, and discrimination exists, and women exhibiting pain from chronic fatigue syndrome, fibromyalgia, and other conditions are among the vulnerable. So, why might that be? 

GENDER INFLUENCE

There are specific factors that influence pain in women that are different from men. Researchers (2016) propose this is because of genetic, anatomical, physiological, neuronal, hormonal, psychological, and social factors.

Gender matters because:


“Women do not want to appear “too strong or too weak, too healthy or too sick, or too smart or too disarranged and struggle for the maintenance of self-esteem or dignity as patients and as women.” https://www.ncbi.nlm.nih.gov/pubmed/12927471

3.     The character of our pain is different.
6.     Our risks for chronic pain are significantly different and higher.


Evidence is mounting. 

“Medical researchers recently found that a specific manipulation of receptors in the nervous system for the neurotransmitter dopamine impairs chronic pain in male mice, but has no effect on females.” Science News (March 6, 2018, accessed September 2018)

There are biological differences in pain processing between the sexes.

DISCRIMINATION IS NOT LIMITED TO WOMEN

I think it is imperative that we understand the differences in the way pain is experienced, reported, and treated as women. We desperately need more research on women’s health that focuses on intractable pain.

However, everyone is vulnerable when it comes to chronic pain. We all share the threats to our self-esteem and well-being when bias is present.

"Although pain is known to be prevalent across society, reliable data are lacking on the full scope of the problem, especially among those currently underdiagnosed and undertreated, including racial and ethnic minorities; people with lower levels of income and education; women, children, and older people; military veterans; surgery and cancer patients; and people at the end of life; among others."

Institutes of Medicine Report, 2011, Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research

That report was in 2011. It’s unfortunate, but the dialogue in 2018 has not improved, in fact, it has gotten much worse. Now everyone is discriminated against…

SIMPLY BECAUSE WE LIVE WITH CHRONIC PAIN

I always like to end on an encouraging note. It is out of adversity that opportunity exists. Use this time to raise awareness. Send a note, tag the CDC, NIH, and your congressional representatives in a tweet. You can find contact information and other helpful information in the Advocates Corner tab at the top of this page.

"A bird doesn't sing because it has an answer,

it sings because it has a song."

~MAYA ANGELOU


Additional Reading:


Coming soon: Brain Under Siege: Centralization, Chronic Pain, and Fibromyalgia (watch for it here.)


In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!



~ • ~ • ~ • ~ • ~ • ~

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. 

Thursday, July 5, 2018

The FM/a® Blood Test and Participation in Fibromyalgia Vaccine Study



The FM/a® Test is making a huge impact on the way fibromyalgia is diagnosed and now it is being used for very important research.










In November of 2017, I wrote about the exciting research that focuses on finding the cause and developing a treatment for fibromyalgia. (1) February of this year, I reported that genetic studies on fibromyalgia are well underway – with the assistance of the University of California, UCLA, and University of Illinois at Chicago. (2) In April of 2017, “Breaking News" included information relative to this announcement. (3)

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

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…

I am excited to report that the long-term reduction in hyperglycemia in advanced type 1 diabetes using BCG vaccine found that after year 3, BCG lowered hemoglobin A1c (a blood test to monitor blood sugars over a period of time) to near normal levels for the next 5 years. That is a significant result. This same vaccine was reported in the above "Breaking News" statement. This is important because this old vaccine for tuberculosis now shows promise as treatment for numerous inflammatory and autoimmune diseases.

BCG = attenuated Mycobacterium bovis Bacillus Calmette Guérin (BCG) strain.

Professor Denise Faustman, specialist in immunology who is affiliated with Harvard Medical School and Massacheusetts General Hospital, was a lead researcher in the vaccine study for diabetes and she will lead the vaccine study for fibromyalgia. The only qualification to participate in this exciting research is to have tested positive with the FM/a Test.

“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.


Will you join me?



PLEASE VISIT


The blood test is now covered by most insurance, including CHAMPVA and Medicare.

Resources:





Additional Information:




In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!



~ • ~ • ~ • ~ • ~ • ~

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. 

Wednesday, May 2, 2018

Science, Fibromyalgia, and Exercise


Courtesy Pexels.com

Last year I wrote about the importance of critical thinking and problem solving and casting a light on recurring theories. This year, I decided to kick off a review of the research beginning with a look at exercise and fibromyalgia.
                                
In my 2015 blog, I asked "Can Aerobic Exercise Reduce Fibromyalgia Symptoms?" As I said, the answer is tricky because there is evidence that aerobic exercise can reduce symptoms, and there is evidence to suggest it can increase symptoms. So, maybe we should look at the evidence on different types of exercise, like warm water (aquatic) exercise, yoga and stretching, and aerobic exercise vs. tai chi.
                                                                                   
AQUATIC EXERCISE

Using assessment parameters we usually see when studying fibromyalgia, researchers (2008) looked at the effectiveness of aquatic (warm water) therapy compared to home based exercise therapy.  They found that both aquatic therapy and home-based exercise programs have beneficial effects. However, when considering pain management, only aquatic therapy had longer lasting effects. And, a 2015 study revealed that a pool-based aquatic aerobic exercise program was the most effective treatment when compared to isometric strength-stretching and aerobic exercise. So, can we conclude aquatic therapy is good for fibromyalgia, maybe not?

In 2014, Bidonde J, et al. concluded that there is low to moderate quality evidence to suggest that aquatic training is beneficial. And “very low to low quality evidence suggests that there are benefits of aquatic and land-based exercise, except in muscle strength (very low quality evidence favoring land)”. What are we to think? 

Ai Chi = The use of breathing techniques and progressive resistance training in water to relax and strengthen the body, based on elements of qigong and Tai chi chuan.

I personally found aquatic therapy made my myofascial pain syndrome pain much worse. Enter Ai Chi. Knowing my past experience, my physical therapist encouraged me try Ai Chi. Trusting in him, I did. It is very different and I liked it. So, it comes as no surprise to me that a 2016 pilot study found “significant differences in values such as pain perception, vitality, mental health, as well as perceived overall improvement in quality of life”. This new approach (Ai Chi), rather than aquatic strength training, may make a difference in the benefits of warm water therapies. 

RESISTANCE EXERCISE

Research on resistance training (isometrics, weight training, etc.) is reported by the experts to be of low quality, so I am not entertaining it here.

STRETCHING AND YOGA

A 2014 Brazilian review, Effects of muscle stretching exercises in the treatment of fibromyalgia, found significant improvement in all studies regarding pain and quality of life. However, they concluded that even though it is clear that muscle stretching for fibromyalgia is important, there is a need for further studies because of the low quality of methods used and the lack of standardization for comparative analysis. This makes it difficult to know if a certain stretching technique is better.

What about yoga?

A 2011 pilot study suggests a protocol for managing fibromyalgia with yoga and meditation. While they do report positive responses, there were only 11 participants.

Courtesy Pexels.com

Side note: I do a few gentle flowing yoga poses as a warm up to tai chi. If my chest feels restricted, I get right to breathing through the child’s pose. Tree pose is my barometer for knowing when I need to work on balance before I do something stupid, like fall over for no reason, or sling my arms into walls, what I call in our BIG book, the “Bull in the China Cabinet Effect.” I have learned that holding postures will activate trigger points and cause mind-altering pain. But, stretching can feel so good; and when it’s done right, it should.


A small 2017 mindful yoga pilot study found fibromyalgia symptoms and functional deficits improved significantly, as did physical tests of strength and balance, and pain coping strategies. These findings indicate that further investigation is warranted into the effect of Mindful Yoga on neurobiological pain processing.”

AEROBIC EXERCISE vs. TAI CHI        

Aerobic exercise is often suggested as a first line treatment for fibromyalgia. However, as recently as 2017 that could change. In a review, researchers report those of us with fibro may see little to no difference in our pain and physical function from aerobic exercise. Quote, “We downgraded the evidence owing to the small number of included trials and participants across trials, and because of issues related to unclear and high risks of bias (performance, selection, and detection biases). Aerobic exercise appears to be well tolerated (similar withdrawal rates across groups), although evidence on adverse events is scarce, so we are uncertain about its safety.” There is some research to suggest the way our body responds to exertional demands could play a role in our intolerance to aerobic exercise, such as running, biking, or other physical activities that increase our heart rate.

Balancing Rocks-Celeste's Photography
There is a great deal of evidence to suggest tai chi is beneficial for improving fibromyalgia symptoms and mobility.  Maybe that’s because our autonomic nervous system tolerates the gentle movements of tai chi better than aerobic exercise. A randomized controlled trial published on March 23, 2018 looked at the effects of tai chi training in relationship to heart rate variability, symptoms, and muscle fitness in women with fibromyalgia and suggest tai chi may be effective for improving autonomic balance, pain, fatigue, strength and flexibility in women with fibromyalgia. And, a study published March 21, 2018 found “tai chi mind-body treatment results in similar or greater improvement in symptoms than aerobic exercise”.

It’s important for anyone with chronic pain to keep moving. And, when it comes to fibromyalgia, it appears the positive results are more likely if the practice of mindfulness is included with exercise.

Additional Reading:

A Year of Fibro: Musings, Writings, and Opinions, May 2016. A recap of my writings on fibromyalgia


In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!



~ • ~ • ~ • ~ • ~ • ~

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. 

Tuesday, February 20, 2018

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:


Thank you for taking this journey with me. 



In healing,
Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

Tuesday, November 28, 2017

The FM/a® Blood Test and Campaign 250: Participation in Fibromyalgia Exome and Treatment Study




The FM/a® Test, is real, and it is making a huge impact on the way fibromyalgia is diagnosed. So, what is it? And, how might it affect you?


My July 2016 blog, FM/a® Blood Test – “How To” and My Results, has been trending on social media and my fibro-friends have told me they have found it very helpful. The following is one excerpt from that blog that sums it up.


“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.

I am often asked why I had the blood test done. Wasn’t I afraid the results might be negative? Of course I had concerns, but for me it was worth the risk since, like all of us, I have suffered the physical and emotional agony of living with an invisible illness. If there was a blood test that would confirm my symptoms were not all in my head, I wanted it. It was worth it, because now I have affirmation that I have a biological test that confirms I have fibromyalgia, and I can participate in important research, making a difference in the lives of people worldwide.

I am happy to share other important news that might influence your decision.

“The FM/a® Test is a recognized diagnostic tool that provides an objective diagnosis of fibromyalgia for Gulf War veterans with this disorder who are seeking to qualify for disability coverage. Additionally, the FM/a® Test is now covered for veterans by CHAMPVA insurance, as well as Medicare and most PPO insurance plans.” (Business Wire, accessed November 21, 2017)


In my April 2017 blog, I shared “Breaking News" regarding sequencing of exomes (fibromyalgia disease-specific gene markers) that will improve the diagnosis of fibromyalgia through the application of the FM/a® Test. (Press release). In that blog, I also shared the announcement of “Campaign 250”. Following is an excerpt.

Breaking News

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… 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…


That time is NOW!



I am honored to say, “I am officially a participant in Campaign 250”. I signed the consent form, which is straightforward, and I submitted my blood, one tube is all it takes. The only qualification is to have tested positive with the FM/a Test. The genomics draw test kit came with detailed instructions. 

I am also happy to share that FM/a® testing is now offered to patients from the U.S., Canada, Europe, Turkey, Mexico, Central and South America, the Caribbean, Hong Kong, Australia and New Zealand.


Would you like to participate?



 PLEASE VISIT

The website provides information you can share with others and your healthcare providers. You will find answers to frequently asked questions, a brochure to download, personal testimonies, access to peer-reviewed medical publications, and a scrolling list of insurance companies known to cover the test (at the bottom of the page). In addition, there are videos to guide you through the process, such as why me, how to get the test, how can I be sure, how can I join, exploring effective treatment, how to get the FM/a blood test, and more. If you have more questions, you are encouraged to give their staff a call.


"From what we get, we can make a living;
what we give, however, makes a life."
~Arthur Ashe


Follow @TheFMTest on Facebook


Additional Information:

FM/a® Blood Test – “How To” – for a detailed account of the process
Blood Test for Fibromyalgia: FM/a Test ® Is Real, Q&A
EpicGenetics Announces Major Clinical Study to Locate Genetic Markers Unique to People with Fibromyalgia and Explore New Treatment Approaches


 (Signature line appended July 2018)


In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!



~ • ~ • ~ • ~ • ~ • ~

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. 

Monday, May 8, 2017

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)



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:



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









"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.  

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