Wednesday, May 11, 2016

A Year of Fibro: Musings, Writings, and Opinions


A Gift from Shari-In My EVFM Support Group
Being a published author five times,  I know great joy and diversion from my own pain. I truly enjoy what I do. 

Writing for ProHealth and Health Central  is a great opportunity to learn  from the enlightening comments you take the time to share.

We make great strides learning to cope with the effects of body-wide pain, non-refreshing sleep, problems putting thoughts and concepts together, and exhausted body systems. (If you are struggling to find balance, please pick up one of our books). 



As I count my spoons, I remember my fellow warriors who also live with invisible illness and pain. As my dear colleague, Dr. Robert Bennett and his team say,  “A careful clinical evaluation is always required in order to identify any condition that could fully account for the patient’s symptoms and/or contribute to the severity of the symptoms.”  It would be overwhelming to include all my articles, but you can find them on my website now. Following are articles through last May on fibromyalgia and common overlapping conditions.  Please take your time, favorite this link and revisit it when you have a particular question and please share what you learn with others in the comments where the articles are posted, that’s how we all learn.

In healing and hope, Celeste






Some of you may know I am having cataract surgery on the 12th. It’s important to me to have better vision so I can continue what I love to do. This blog was prepared in advance to raise awareness for FIBROMYALGIA AWARENESS DAY. I hope you will help me spread the word by sharing this list of fibro related articles.







~ • ~ • ~ • ~ • ~ • ~

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

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

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 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.  


Friday, May 6, 2016

Dear Legislators-Stop S.2758 - PROP Act of 2016



An article written by Pat Anson, editor at Pain Network News, PROP Leads New Effort to Silence Pain Patients, prompted me to respond in my comments, and take it a step further by letting my legislators know how I feel. Once posted on my blog, this letter will also be tweeted out to various individuals and shared on my various social media accounts. I hope you will do the same.

You can find contact information, including how to contact your senator, representative, and others on my website at the bottom of the "Advocacy Template Letter".



April, 2016

RE:
H.R.4499
S.2758 - PROP Act of 2016
A bill to amend title XVIII of the Social Security Act to remove consideration of certain pain-related issues from calculations under the Medicare hospital value-based purchasing  program, and for other purposes; to the Committee on Finance.


As an RN who worked her entire career in the hospital setting, writing policies and procedures for staff development and working closely with hospital standards, the Joint Commission, and the American Society of Hospital and Education and Training (ASHET), this Act is deplorable. Surgical pain is clearly not the only pain that needs to be addressed in the hospital setting, though controlling pain improves healing and patient outcome in surgical patients, gets them moving, and prevents things like pneumonia. Pancreatitis, the affects of systemic rheumatologic events, kidney stones, broken bones, burns, and even heart attack are among the hospital patient population requiring pain care.

How would you feel if you were given morphine during a heart attack, which we know improves cardiac output, and you were not reassessed? What if your daughter develops post partum pancreatitis and suffers needlessly? What if you have a kidney stone and you are left to pace the ER with no relief? What happens if a patient’s pain creates an ugly primal instinct that puts hospital staff at risk? You MUST pay attention, because that is exactly what will happen. Hospital policies and procedures are based on what their governing bodies (i.e. CMS and JCAHO) suggest and find important. When outcome is the goal, patients are less likely to be readmitted. There is a very good reason that hospital pain care should be assessed by the patient. Patient suffering to boost PROP, Phoenix House, profit margins is inhumane.

Please support the efforts of Lemeneh Tefera, MD, Centers for Medicare & Medicaid Services and stop the lunacy created by the PROP Act of 2016, S.2758.


Sincerely, Celeste Cooper

~ • ~ • ~ • ~ • ~ • ~

Resources of interest:

S.2758 - PROP Act of 2016
04/07/2016   Read twice and referred to the Committee on Finance.
Type of Action: Introduction and Referral
Action By: Senate

H.R.4499 - PROP Act of 2016
Sponsor: Rep. Mooney, Alexander X.  [R-WV-2] (Introduced 02/09/2016)
Committees:  House - Ways and Means
Latest Action: 02/11/2016 Referred to the Subcommittee on Health.  (All Actions)

Measurement of the Patient Experience Clarifying Facts, Myths, and Approaches ONLINE FIRST
Lemeneh Tefera, MD, MSc1; William G. Lehrman, PhD2; Patrick Conway, MD, MSc3

~ • ~ • ~ • ~ • ~ • ~

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

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

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 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.  

Tuesday, May 3, 2016

Blood Test for Fibromyalgia: FM/a Test ® Is Real, Q&A




A blood test for fibromyalgia is available that you, or your doctor, may not know about. It is the FM/a® test.                                                       
Following is information on insurance, criticism, realities, and research. Dr. Bruce Gillis, MD, MPH, founder and CEO of EpicGenetics and I consulted, so you can have the best information.



Insurance

Many insurance carriers, including Blue Shield of California and Medicare are now reimbursing for the FM/a® blood test. The following explanation is for you and your provider. 

1.       Go to www.thefibromyalgiatest.com and click the “Ready to Get Started” button.

2.      This takes you to the "I’d Like to Order FM/a®” page. Here you will find,  "Can you answer YES to experiencing or having recently experienced several common fibromyalgia symptoms, including: chronic fatigue, many painful or tender areas, mental/brain fogginess, poor sleep, trouble concentrating, frequent headaches, joint aches, leg cramps, restless legs when you sleep, anxiety/nervousness, feeling depressed, numbness or tingling?"

*You must be able to answer YES to at least four of the symptoms to be eligible.

3.     Next is the online form that asks for relevant data, including contact and insurance information; information needed for the authorization and order processing.
4.     After completing the first three steps, you will receive an email confirmation. This begins the insurance review and statement of coverage.
5.     A link to a “Physician Authorization Form”, and instructions for your doctor on how to fax paperwork will also be sent to your email.
6.     The FM/a® test kit is sent to your doctor for a simple blood draw. The kit includes an overnight shipping package and instructions for returning blood samples to the CLIA-certified and CAP Accredited laboratory in Los Angeles. 
7.     Results take 7 to 10 days.

*If you don’t have insurance, EpicGenetics offers a zero percent interest, six-month payment plan.

Dr Gillis Is Dedicated

Dr. Gillis has personally spoken with many people who have questions about the diagnosis, available treatments, how to work with doctors, spouses, family members, etc. He says he feels a personal obligation to be available because he and his co-researchers at the University of Illinois, College of Medicine were the first to legitimize fibromyalgia with a confirmable diagnostic test.

He appreciates advocates and patients willing to help build a database that will lead researchers to explore immune system pathways, potential DNA/RNA gene markers, and the development of medications and other treatments that target the cause rather than mask symptoms.

Why Are More Physicians Ordering the FM/a® Test?

Dr. Gillis says there has been a significant increase in tests ordered. He believes this is because there is greater acceptance by physicians. They are moving away from “rule-out” tests because the FM/a® test gives a direct, “rule-in”, rapid, accurate and cost-effective diagnosis. Because more people are aware and more insurance companies are paying for the test, we (people living with fibromyalgia) are asking our doctors to order it too. It is affirming to know there is a biomarker— a biological test—that confirms our symptoms.

My rheumatologist is willing to order it for me. And, now I have the information I need to get the ball rolling in time for my next appointment. I hope you can do the same.

https://thefibromyalgiatest.com/

Questions, Answers, and Opinions

A recent article in Fibromyalgia News Today came to me via Google Health News, Proprietary FM/a Fibromyalgia Blood Test Claims Quick, High Accuracy Results. When I shared it, I received some valid questions. Following I address the questions, and share my thoughts.

Questions

“What if you've got all the symptoms of fibro, you've had all the testing to rule out everything else, you've been treated for fibro for years, you have the test, and it says you do not have the markers? Will you be told it's all in your head and be taken off all of your meds? Can the test truly be trusted?”

My Opinion

I have asked myself these questions and reasonable deduction tells me that if my test is negative, it is possible that other chronic pain has become centralized, causing changes in my brain that leads to body-wide tenderness. (There is ongoing research on this.) However, no test is 100% accurate. In fact, if someone says it is, question the validity.

The FM/a® test research, Unique ImmunologicPatterns in Fibromyalgia, found the biomarker in 93% of study participants. So, if there is reason to suspect a false negative, one might consider testing for loss of heart rate variability (HRV), which has also been suggested as a potential biomarker.  Kenny, MJ and Ganta, CK (2014) state, “Further understanding of regulatory mechanisms linking the sympathetic nervous, parasympathetic nervous, and immune systems is critical for understanding relationships between chronic disease development and immune-associated changes in autonomic nervous system function.”  Another reason the FM/a® test is so important.

It is possible to be misdiagnosed. Knowing what it isn’t could lead to the right tests and treatments for a disease that has been mistakenly attributed to fibromyalgia.

Particularly Interesting

Dr. Gillis tells me that in the first four years since the FM/a® test has become available, “the only suspected false negative test results occurred in patients who failed to stop taking their immune system blocking drugs”.

Can the Test Be Trusted?

In late 2012, The FM/a® test was awarded for “Outstanding Research in Clinical and Diagnostic Immunology” by the American Association for Clinical Chemistry. And both the initial and follow up studies were conducted at the University of Illinois at Chicago, College of Medicine, which ranks #11 for 2016 | Best Medical Schools: Research Rankings Methodology. Both studies have been published in peer-reviewed journals.

The different results on cytokines (inflammatory immune protein molecules) compared to other studies could be due to the methods used (i.e. ELISA vs. the multi-biomarker based FM/a® test, which assesses cytokines and chemokines from blood mononuclear cells). The American College of Rheumatology suggests that FM occurs more frequently in immune rheumatic disorders and we know ME/CFS, interstitial cystitis and other disorders with suspected immune dysfunction overlap. So, differences in other studies could be due to subjects who are misdiagnosed with FM, something the FM/a® test will guard against.

The follow up study for specificity to FM,  Cytokine and Chemokine Profiles in Fibromyalgia,Rheumatoid Arthritis and Systemic Lupus Erythematosus,  compared other rheumatic conditions and found it to be specific to fibromyalgia, further solidifying the validity of the blood test. 

Some, whose research is funded by pharmaceutical companies, criticize Dr. Gillis’ because he is the founder and CEO of the lab that does the FM/a® test. But, I have this to say. The FM/a® blood test is performed using a unique multiplex immunoassay. Because of the complexity, just like certain skin biopsies or DNA, it must be analyzed by a specific lab that is specially equipped. Remember, specialized labs were once used to detect HIV and now we are now looking at a vaccination, and the potential to wipe AIDS off the map. Specialized laboratories, such as EpicGenetics, are necessary to accommodate developing science.

It is also apparent that insurance companies and Medicare believe the test is valid. As more tests are ordered, it will maximize the lab’s resources and drive cost down, and just like the HIV test, we can expect the FM/a® test to receive the recognition it deserves.

Why Is Research Important?

I hope every study participant from here on has this test, because it will change the landscape of fibromyalgia. Overlapping symptoms with other disorders can be exclusively ruled out. This is important because the approved FM drugs (antidepressants and anticonvulsants) do not treat immune disease directly. After extensive literature review over the past two decades, I have seen a recurring trend, a disruption in the systems that affect immune response. Sure, there are many who do not have time to keep up with ALL the research. And, there are those who tell us fibromyalgia is psychosomatic (in my opinion due to 2010-2011 ill-conceived, unapproved diagnostic criteria), but remember multiple sclerosis was once known as hysterical paralysis until technology caught up to the patient. 

In 2015, a second study on the cerebral spinal fluid of ME/CFS patients found significant reductions in the concentration of cytokine IL-10, which is in contrast to a previous study. Peterson D, et al., state the difference “may be due to the heterogeneity of the disease, different analytical methods, and the presence of divergent patient subgroups”.  This further corroborates my personal opinions expressed here.

Because of the FM/a® test, Dr. Gillis can collect information that is just as important as empirical studies. The data will spirit life into important research, resurrect research previously conducted, and lead to more funding for replicated studies. Some research of recent years has gone off course, wasting precious financial resources for a disorder that was first documented by British surgeon William Balfour in 1816 (discussed in the history of fibromyalgia in our book). 

Helping collect data through the FM/a® test is one way we can participate as change agents for the future of fibromyalgia. The only way is forward.

~ • ~ • ~ • ~ • ~ • ~

I am not affiliated with EpicGenetics, nor have I received any pay for this article.

You might also be interested in reading Cort Johnson’s article regarding the FM/a®test at Health Rising.




~ • ~ • ~ • ~ • ~ • ~

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

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

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 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.  

Tuesday, April 26, 2016

Call to action on S.483 and the National Pain Strategy

Update 5/8/2019: S.483 was signed by President Obama 4/19/2016. An update will be coming as time allows. However, please follow the link to the letter to President Obama from PAINS. While research on addiction is important, we need money allocated to investigate treatments for chronic pain that includes alternative therapies, and yes, opioids. Chronic pain affects far more people than addiction, yet few seem to realize that. We need evidence that will ensure access to medications that are available now. 


Following is my letter to President Obama, my state senators and representatives. Please join me in asking your legislators to pass laws that will provide chronic pain patients the care we need and change how pain is perceived, judged and treated in America.  Let them know you want them to support legislation that coherently and collaboratively addresses all aspects of pain. Let's bring research funding, proven integrative care, and access to medications to the table. Let them know how you want them to respond when legislation passes to them. Send them the letter from PAINS to President Obama, as I have.  You can find contact information for your legislators on my website at: http://www.celestecooper.com/sample-advocacy-letter.html


 
“Those who have learned by experience what physical pain and bodily anguish mean, belong together all the world over; 
they are united by a secret bond.” 

- Albert Schweitzer 



Dear____

As an RN, chronic pain patient, advocate, writer, and published author of self-help books for coping with chronic pain, I ask that you please read the letter sent to President Obama from the Pain Action Alliance to Implement a National Strategy asking him to make the finances and tools available to implement the National Pain Strategy. Chronic pain patients and those suffering from opioid addiction deserve compassionate, effective treatment. I have lived with chronic pain since childhood, having suffered life-long chronic migraine. Now in my “golden years” I suffer from more than one chronic pain condition, two for which we know little about and one that is extensive and inoperable. To withhold the medication that allows me to do the things I write about or to look at me differently because an opioid is the only medication that helps me is inhumane. To make decisions based on media sensationalism instead of reliable evidence is not democratic, nor is it the values this land is supposed to stand for. It is equally deplorable that addicts are kicked out of treatment before they are ready. Mental health care in the United States is not outcome based; it is driven by ability to pay. These things must change, but they will not unless we have your support.

[US Senators]
Please enact legislation such as S.483 introduced by Senator Orrin Hatch, and other legislation that will move the National Pain Strategy forward. 

[US Legislator]
Please support H.R. 471 (S. 483) legislation  introduced by Rep. Tom Marino, and other legislation that will move the National Pain Strategy forward.

Please read:

Letter to President Obama from the Pain Action Alliance to Implement a National Strategy

Thank You

~ - ~ - ~ - ~ - ~ - ~ - ~ 


Also see:

Others in support of the NPS: 

            CPTAF also sent a letter to the Senate HELP Committee 
  • Dr. Sean Mackey, Stanford University Pain Research, and Dr. Lynn Webster, Past President of the American Academy of Pain Medicine, author and producer (see interview, here). 
  • Other organizations, and individuals, many outlined at the end of the PAINS letter, those who are on the steering committee at PAINS, and those aligned with the CPTAF (also listed at the end of their letter to the US Senate HELP committee noted above).



~ • ~ • ~ • ~ • ~ • ~

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

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

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 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, April 16, 2016

A Spring Metaphor - Sculpting Our Thoughts on Pain


Though we have an idea of what to expect, spring unfolds differently. This year, we saw new records, and new challenges. In some places, spring came early and gave us a countryside bursting with color and new life, while other places are experiencing a late winter. This change and unpredictability is a metaphor for those of us who live with pain and chronic illness.

Our thought seedlings give life to our spirit and allow us to see challenges as motivators. But, some storms rock the earth beneath our feet. As a migraineur, spring storms throw me to the floor and knock the wind out of me. However, when I stand up again with my partner, challenge -- I will lead; I will rumba in a new direction and thank the spring storm for its nourishment to the earth and for providing me promise of new life. 

I find great strength, comfort, and diversion through poetry and photography, and I am thankful that I have found ways to fill up my thought spaces by writing for others who share this journey with me. The following photo and poem are excerpts from Spring Devotions in the Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain series.

               Day 4 – Learning to Rumba to Rumbles


To Rumba with the Universe

by Celeste Cooper

Twinkles of light rumba across the morning dew,
While butterflies dance in the wind.

Tumbleweeds glide across the earth's open fields,
Blown away in time to explore a new path.

Fear cleansed by rain exchanged for the joy of freshness,
The sky opens, the sun bumps against clouds.

Renewal of spirit, the earth in cadence with my wits,
All in rhythm, as if, I rumba with the universe.


Thought Seedlings

Do you rumba? Do you like the name I gave the photo? What would you name it?  

Take a stab at changing up my poem to make it yours. My poems are not perfect, I share them so my readers know they can also express feelings and touch a sense of self. 

"Imperfection is relatable." 
Lauren Conrad

Tell me what you think in your comments, because I love to hear how it speaks from your heart to mine. In healing, Celeste

~ • ~ • ~ • ~ • ~ • ~

Learn more about what’s between the covers of Spring Devotions book edition here. http://www.celestecooper.com/spring-devotions.

Thank you to our readers for your kind thoughts and uplifting reviews of Spring Devotions in the Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain Series. Too all our new readers, welcome.


~ • ~ • ~ • ~ • ~ • ~

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

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

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 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, April 4, 2016

ACR Responds to Inquiry on Fibromyalgia Criteria





As many of you know, I wrote a letter to the American College of Rheumatology (ACR). You can find my letter at Criteria for Fibromyalgia on My Radar AGAIN!

Following is the reply from the senior director of quality at the ACR and my response to her is after that.


Reply from ACR Senior Director:

Ms. Cooper,

Thanks for your inquiry.  My apologies for the delay in getting back to you this week; I am away and trying to catch up on email responses.

As you and Jocelyn have correctly noted, the ACR did provide preliminary endorsement of the Wolfe et al criteria in 2010.  This endorsement was published and cannot be “undone,”  so readers can and will continue to see that endorsement online and in print.  However, since that endorsement was made, the ACR has decided to no longer endorse diagnostic criteria for any disease, for reasons Jocelyn explained.  So readers won’t see a new or updated endorsement from the ACR online or in print.

For every criteria the ACR endorses, science continues to progress after the endorsed publication, and different things are published over time.  This means readers can always find more recent information than something published 6 years ago – and that is the case here.  An evaluation of the newer publications and whether they are better than the older ones should be done by readers and experts in the field, but at this time, the ACR does not plan to do it, given the ACR’s decision to no longer review diagnostic criteria for ACR endorsement.

I hope this helps clarify things.

Best regards,


My response:

Thank you so much for answering in such a timely manner. I am eager to share with my colleagues and fellow patients. 

I am sure those at the ACR understand my concerns that many rheumatologists (and general practitioners) are unaware of the ACR position on the fibromyalgia diagnostic criteria. Many articles come across my desk that suggest clinicians embrace the Preliminary Proposed Criteria, even though the ACR has not endorsed it.

In light of newer research, as you say, the criteria are a dinosaur. Yet, because of the strong emphasis on somatic complaints without probable cause, fibromyalgia is now becoming a catchall diagnosis again. I have had more than one patient tell me their physician now says fibromyalgia is a psychosomatic illness. I am certain you would agree that this is a travesty for the some five million Americans with this painful and disorienting syndrome. My some 5,000+ contacts report they do have another pain disorder, such as CRPS, EDS, Migraine, spinal disease, chronic pelvic pain, or other rheumatic conditions. I am sure the ACR is aware of the autonomic effects that have been studied by many different groups of researchers with consistent results, in particular heart rate variability. I appreciate that the ACR does recognize that FM often co-occurs with other rheumatic disorders, thumbs up! I would take it a step further and say it co-occurs with other pain conditions, as stated in the Alternative Criteria led by Dr. Robert Bennett.

I truly appreciate that the American College of Rheumatology has decided not to take a position on diagnostic criteria at this time. I appreciate that we need a biomarker such as the FM/a test, or loss of heart rate variability. But in the meantime, I have concerns that patients will not receive the appropriate treatments because their complaints will be dismissed as just, more fibromyalgia. And when other conditions have been ruled out, clinicians should understand that there are objective tests to investigate the common complaints of fibromyalgia. Those include surface EMG for muscle spasticity and muscle tension or thermal changes in the periphery. Ultrasound to locate and treat myofascial trigger points which cause peripheral pain in many chronic pain disorders , a sleep study to evaluate sleep competency, a neurocognitive exam to evaluate cognitive disturbances, and a nocturnal EKG, which can be done with a sleep study to evaluate heart rate variability. These are all things that may be contributing factors to fibromyalgia and can be addressed and treated appropriately.

Once again, thank you for your time and consideration.

Respectfully, Celeste

~ • ~ • ~ • ~ • ~ • ~

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

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

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 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.  

Sunday, April 3, 2016

Criteria for Fibromyalgia on My Radar AGAIN!



Today, I am posting my letter to “Senior Specialist, Public Relations, American College of Rheumatology”. She and I have corresponded in the past on this issue, and I was assured that the ACR was not endorsing any diagnostic criteria now or in the future. Read on and you will see why I felt a need to contact her once again.




Good morning Joyce.

I am writing you because in December of 2014, you sent me a letter stating that the American College of Rheumatology (ACR) was not going to endorse any fibromyalgia diagnostic criteria. Today while researching for a freelance article, I stumbled upon the website for ACR-endorsed Criteria for Rheumatic Diseases (1) demonstrating that the ACR has endorsed the Preliminary Criteria, 2010, Wolfe F, et al. (2)

I am concerned, especially when there are other criteria better befitting the patient, i.e. the Alternative Criteria by Dr. Robert Bennett, et al. (3)  Medscape (4) and Network Rheumatology(5), and many others agree. However, there are clinicians that have been led to believe Dr. Wolfe, et al. criteria are approved, including the CDC (6). Dr. Wolfe also has a checklist on his website, ACR FM 2010 diagnostic criteria questionnaire modified for direct patient administration (7), which is misleading. And, in a Google search I find many articles stating, “How to Use the New ACR Diagnostic Criteria”.

If the criteria are not endorsed, then why was it published in a peer-reviewed journal with such a title, Preliminary Proposed, and why is it on the ACR website, Endorsed Criteria for Rheumatic Diseases? This is extremely important, because clinicians who use these criteria believe it is approved by the ACR, and people are being misdiagnosed. We are back to square one! It’s all in your head, because of these criteria. The ACR needs to take a stance on this. There is sufficient evidence to suggest there is an autonomic effect, loss of heart-rate variability, and an upset in the sympathetic nervous system response in fibromyalgia. There is much more, but suffice it to say, the ACR can search Pub Med.

I appreciate your response to my concerns and appreciate our previous correspondence. As a freelance writer for online health organizations, an author, and advocate, it is important I share accurate information. I am sure you understand.

Thank you in advance for your kind consideration. Celeste Cooper, http://CelesteCooper.com

Resources:

(3) Bennett R, et al. Arthritis Care & Research (2014) DOI: 10.1002/acr.22301.
(6) CDC – Fibromyalgia
(7) Frederick Wolfe - ACR FM2010 diagnostic criteria questionnaire modified for direct patient administration.


Following is the letter I received from you in December, 2014:

…the ACR has chosen not to endorse newly developed or validated diagnostic criteria now or in the future.


Other Reading:



Celeste's Website

Celeste's Website
Click on the picture