Germans Suggest Only Medication for Depression is for Fibromyalgia by Celeste Cooper

As Suspected

Using the “Preliminary ACR” diagnostic criteria is taking us down the wrong road. As I was perusing Pub Med, I found many papers, some pro and some con, on this supposed unapproved diagnostic criteria developed by Dr. Frederick Wolfe as principle investigator. (See the letter I received from the American College of Rheumatology, here.)

Interestingly, those studying fibromyalgia in cancer patients do not agree. This is a sampling that speaks to my concerns as drafted in my last blog. Hey! American College of Rheumatology, What’s the Deal?

Dreher T, Häuser W, Schiltenwolf M.

 [Fibromyalgiasyndrome - updated s3 guidelines]. Z Orthop Unfall. 2013 Dec;151(6):603-9. doi: 10.1055/s-0033-1350985. Epub 2013 Dec 17. [Article in German]

According to the modified ACR criteria, 2010, chronic widespread pain and accompanying sleep disturbances and a physical as well as mental state of exhaustion lead to the diagnosis of fibromyalgia syndrome. It is not mandatory to check tender points (ACR 1990 criteria). A graduated treatment approach depending on the severity level of the fibromyalgia syndrome in the individual patient is recommended. Active treatment options (aerobic training, meditative movement therapies, strength training) should be preferred to any drug therapy in the long-term treatment of fibromyalgia. If indicated, amitryptiline or duloxetine may be used to treat accompanying depressive or generalised anxiety disorder. Muscle relaxant medication, non-steroidal anti-inflammatory drugs and strong opioids should be avoided. The multimodal pain therapy considering all psycho-social aspects is a promising treatment option for fibromyalgia syndrome of moderate to high severity. {So it’s back to all in our head. All these treatment modalities would be recommended to anyone with chronic pain, they are not specific to FM. Interestingly, Hauser and Wolfe have done studies together. And hey! these criteria have NOT BEEN APPROVED BY THE ACR. Cc]

Change Perspectives

You will find the following study very interesting from an entirely different perspective.

Tanriverdi O.

Is a new perspectivefor definition and diagnostic criteria of fibromyalgia in early stage cancerpatients necessary? Med Hypotheses. 2014 Apr;82(4):433-6. doi: 10.1016/j.mehy.2014.01.018. Epub 2014 Jan 27.

Fibromyalgia is a most common pain syndrome characterized by the presence of chronic widespread pain and tenderness with manual palpation. However there is no enough data about frequent of fibromyalgia syndrome in patients with cancer. How often FM is being used in oncological practice and how we are managing this case by medical oncologists. Widespread pain index and symptom severity scale are not clear enough in patients with cancer when ACR-2010 diagnostic criteria for FM are considered. In conclusion, there is it may more prevalence of fibromyalgia in patients with cancer. For the diagnosis of fibromyalgia, be new diagnostic criteria for early-stage cancer patients.

Criteria that Affects the Future of Fibromyalgia

As most of you know, I support the Bennett, et al critieria for obvious reasons and they are given in my my blog “The 2013 Alternative Criteria Dr. Robert Bennett, et al. – Interpretation for patients and providers by Celeste Cooper, here.

I would like to see how it performs in the real world. My suspicions are that it will outperform, there will be fewer gray areas, and answer the questions asked by Dr. Tanriverdi.

A Sampling - Collaboration between Dr. Wolfe and Dr. Häuser

Fibromyalgia prevalence, somatic symptom reporting,and the dimensionality of polysymptomatic distress:results from a survey of the general population.

Wolfe F¹, Brähler E, Hinz A, Häuser W.

Arthritis Care Res (Hoboken). 2013 May;65(5):777-85. doi: 10.1002/acr.21931.

See the interview on this paper here. 

Fibromyalgia and physical trauma:the concepts we invent.

 Abstract

CONCLUSIONS:

Despite weak to nonexistent evidence regarding the causal association of trauma and fibromyalgia (FM), literature and court testimony continue to point out the association as if it were a strong and true association. The only data that appear unequivocally to support the notion that trauma causes FM are case reports, cases series, and studies that rely on patients' recall and attribution - very low-quality data that do not constitute scientific evidence. Five research studies have contributed evidence to the FM-trauma association. There is no scientific support for the idea that trauma overall causes FM, and evidence in regard to an effect of motor vehicle accidents on FM is weak or null. In some instances effect may be seen to precede cause. Alternative causal models that propose that trauma causes "stress" that leads to FM are unfalsifiable and unmeasurable.

Wolfe F¹, Häuser W², Walitt BT², Katz RS², Rasker JJ², Russell AS².

J Rheumatol. 2014 Sep;41(9):1737-45. doi: 10.3899/jrheum.140268. Epub 2014 Aug 1.

Symptoms, the nature of fibromyalgia,and diagnostic and statistical manual 5 (DSM-5) defined mental illness inpatients with rheumatoid arthritis and fibromyalgia.

 Abstract

CONCLUSIONS:

All patients with fibromyalgia will satisfy the DSM-5 "A" criterion for distressing somatic symptoms, and most would seem to satisfy DSM-5 "B" criterion because symptom impact is life-disturbing or associated with substantial impairment of function and quality of life. But the "B" designation requires special knowledge that symptoms are "disproportionate" or "excessive," something that is uncertain and controversial. The reliability and validity of DSM-5 criteria in this population is likely to be low.

Wolfe F¹, Walitt BT², Katz RS³, Häuser W⁴.

PLoS One. 2014 Feb 14;9(2):e88740. doi: 10.1371/journal.pone.0088740. eCollection 2014.

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Update 2015

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

Celeste Cooper, RN

Author—Patient—Health Central Chronic Pain Pro —Advocate

New Website

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.  

Hey! American College of Rheumatology, What’s the Deal? by Celeste Cooper

I have concerns regarding the response I received from the American College of Rheumatology (ACR) regarding fibromyalgia diagnostics. You can read my inquiry letter here and the ACR response to that letter here. Could it be the ACR is distancing itself from the fibromyalgia the controversy? 

My concerns as follows:

• Some studies show immune dysfunction in fibromyalgia, so could fibromyalgia be treated by immunologists in the future?
• Studies show the brain of the fibromyalgia patient is structurally affected, so should neurologists study and treat fibromyalgia?
• Other research suggests fibromyalgia is indeed an autoimmune disease similar to lupus (SLE). If this is the case, knowing a hallmark symptom is indeed overwhelming muscle and soft tissue pain and anomalies, shouldn't it stay right where it is—under the umbrella of rheumatology?
• What kind of research can we expect in the future, and investigated by whom?
• If the ACR will not endorse any criteria, who will?
• Don't clinicians currently look to the ACR for guidance, as they would look to the American College of Neurology for diagnostic criteria for MS?
• Can we expect consistency if so many are being misdiagnosed with fibromyalgia as we are seeing with the Wolfe, et al criteria? How will a tainted study participant pool yield accurate results?
• Exactly who should be responsible for amending and updating the criteria for diagnosing fibromyalgia to reflect research findings moving forward?

Can we expect research funded by outside sources to be based solely on their intent to prove their product to boost their bottom line? Are we to be okay with having half the participant pool misdiagnosed with fibromyalgia when they actually have a mental health disorder? See the following excerpt from a blog I posted in April 2013, Fibromyalgianess is ALL in Our Head? My Correspondence with DrFrederick Wolfe.

Celeste Cooper (Me): I also have grave concerns over the non-specific disease related symptoms being seen as somatic complaints, in the [Preliminary Proposed Diagnostic Criteria for Fibromyalgia] PPDCFM when they can be linked to specific comorbid disorders and treated appropriately. Marla Silverman and I co-wrote an ADVOCACY PIECE over a year ago regarding our concerns for CFS/ME and FM in the new DSM-5, and now our concerns are born out. I fear it is because the PPDCFM specifically identifies somatic complaints associated with FM without tying them to the comorbid disorders other than IBS and hypothyroidism and that 40% of FM patients (as you report) fall into this DSM-5. This is significant.

 Dr Wolfe’s email response: I don't share that concern or agree with you. However, the physician can certainly chose to exclude symptoms of known diseases if she chooses. That's why we ask physicians to analyze the symptoms and make a judgment.

I am surprised that Arthritis Care and Research would allow the ACR to be named in titles if they indeed want to distance themselves from any criteria, ie. New American College of Rheumatology Criteria for Fibromyalgia: A Twenty-Year Journey by Frederick Wolfe, published in Arthritis Care and Research, May, 2010. This is just one of many examples. Folks are referring to these unapproved criteria as the new ACR criteria in their papers.

Is It Just Me?

Is it just me, or does the ACR letter seem ambiguous? Following are excerpts that factored into my conclusion.

… the ACR did provide provisional endorsement of the 2010 FM diagnostic criteria authored by Dr. Wolfe, et al… but the criteria were not yet validated in an external dataset so full endorsement could not yet be given… Once this external validation work has been done, investigators can then come back to the ACR for consideration for full approval.  

… the ACR has since 2010 established a policy that it will no longer endorse diagnostic criteria. …we recognize that there will be exceptions to any standard criteria that are developed.  Because our endorsement of diagnostic criteria may imply that this is not the case, the ACR has chosen not to endorse newly developed or validated diagnostic criteria now or in the future. [So why are the suggesting that once it is validated by an outside source, it is to be resubmitted for consideration of full approval. CC]

You can read the full letter here.

And what about the Bennett, et. al criteria? No mention, even though it was published in the September, 2014 Arthritis Care and Research?

By the Seat of Their Pants—Post Exfacto

I believe the ACR is flying by the seat of their pants on this one, post exfacto (after the fact). The Wolfe criteria have been criticized for the same reasons I am concerned. The criteria under-performs and identifies patients with FM at a much greater rate than the 1990 criteria. It doesn't take a rocket scientist to figure out this is because they are diagnosing fibromyalgia in patients with somatic symptoms disorder (pdf here). 

A direct quote from the DSM-5:

 "...while medically unexplained symptoms were a key feature for many of the disorders in DSM-IV, an SSD diagnosis does not require that the somatic symptoms are medically unexplained."

Is it starting to make sense as to why some physicians now see fibromyalgianess as a label for psychosomatic illness? 

What can we do?

• Talk to your physician about what criteria he or she used to make your diagnosis.
• Make your providers aware of the stance the ACR has taken.
• Educate your provider on the Bennett Alternative Criteria. (See my blog, which was over-viewed by Dr. Bennett. http://fmcfstriggerpoints.blogspot.com/2014/09/the-2013-alternative-criteria-dr-robert.html#.VAS01fldU6w
• Share this blog with your doctor or his/her nurse. Ask about their opinion and write about it. We all need to hear encouraging words. I am thankful to say, there are those who strongly disagree that fibromyalgia is a psychosomatic illness.
• Write to the American College of Rheumatology, here and to the editor of Arthritis Care and Research, here. 
• Support the researchers with your gratitude for what they do. (You can usually find an email address for the lead investigator in the abstract on PubMed, here. 
• Use the helpful links on my website, here.

~ • ~ • ~ • ~ • ~ • ~

Update 2015

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

Celeste Cooper, RN

Author—Patient—Health Central Chronic Pain Pro —Advocate

New Website

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.  

”FIBROMYALGIANESS”—Patient Harm: The Facts and the Effects of Fibromyalgia Diagnostic Criteria by Celeste Cooper

Someone recently shared a comment made by her physician at Duke University that horrified me. I was appalled that a physician would make such a statement, so I want to share my reaction with you. It goes like this…

Duke University physician reportedly said:

"You do know that fibromyalgia is just a word we use 

to talk about psycho-somatic pain, don't you?"

Could it be she read “The American College of Rheumatology Preliminary Diagnostic Criteria for Fibromyalgia and Measurement of Symptom Severity”? (Wolfe, 2014). In a letter to follow this blog, I will be looking into whether or not the American College of Rheumatology has approved the 2010 criteria. It appears they consider comorbid conditions of migraine and IBS (here) that are not considered in the Wolfe criteria as follows:”

“Of the binary variables, irritable bowel syndrome, abdominal pain, and headache had variable importance. However, they added no power to correct classification and we did not include them in the diagnostic criteria.” (Page 208, Wolfe, et al., 2010).

Could it be this Duke University physician is unaware of what others in the field have to say? See “ACR 2010 criteria for fibromyalgia critiqued by: Mary Ann Moon, Family Practice News Digital Network, here. 

Could it be that she did not see Dr. Sean Mackey’s lecture at Stanford University that I believe supports key elements in the 2013 Alternative Diagnostic Criteria? You can view it here.

This attitude toward fibromyalgia must be stopped in its tracks if we are to maintain forward momentum. There is a great deal of empirical evidence showing FM is biological. Yet, despite repeated research that the brain of the FM patient does not respond to painful stimulus in a normal way, (not only the emotional center, but also the center in the brain that specifically interprets pain), many practitioners, even those from Duke University, are ignorant. The 2010 Preliminary Proposed Diagnostic Criteria modified in 2011 set forth by Dr. Frederick Wolfe are endangering the many strides taken to understand fibromyalgia over the past 100+ years.

“[Fibromyalgia] has been known to exist for more than a hundred years. Symptoms of what we know today as FM were first described in the seventeen hundreds, and the disorder was first observed and documented by British surgeon William Balfour in 1816. In 1904 the same collection of symptoms was recognized by another British fibromyalgia pioneer, Sir William Gowers, who described chronic soft tissue syndromes as fibromyositis.” (Excerpt Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection.)

http://www.dsm5.org/

We also have the new Diagnostic and Statistical Manual of Mental Disorders (DSM-5) from the American Psychiatric Association's (APA) to thank for what Dr. Wolfe calls FIBROMYALGIANESS. Marly Silverman and I wrote about, and predicted, this two years ago in a piece on the prospects of the DSM-5.     

I have been in collaboration with well-respected fibromyalgia expert Dr. Robert Bennett, and have written a blog explaining his well-researched diagnostic criteria, which DOES consider all aspects of fibromyalgia. He and his colleagues report their findings without bias. I hope you will read that blog here. Pay close attention to the example of the 2013 Alternate Fibromyalgia Criteria (2013 Alt FM Criteria) and the proven tools such as the Fibromyalgia Impact Questionnaire (see: http://fiqrinfo.ipage.com/). Following is an excerpt from that blog with my comments.

*1. “Fibromyalgia patients have a continuum of symptoms; a diagnosis based on a strict numerical cutoff is subject to error.” In other words, a physician or nurse practitioner should not be limited by a subjective questionnaire. They should rely on their abilities to physically assess a patient with hands-on exam to assess physical complaints, take a patient history, order and interpret test results, complete a physical exam, and apply their diagnostic skills. No practitioner should limit the scope of their abilities. Without these expert assessments, we would not know that the tender point count has not stringently met the 1990 ACR criteria.

*2. “The presence of another pain disorder or related symptoms does not rule out a diagnosis of fibromyalgia.” We know from the literature that fibromyalgia can and often does coexist with certain other disorders, such as those defined by the CDC. Dr. Wolfe's modification of his 2010 criteria suggests in point three under the description of the criteria above in order to diagnose fibromyalgia, “the patient does not have a disorder that would otherwise sufficiently explain the pain.

* 3. “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.” A clinical evaluation includes the parameters mentioned above in *1. The Bennett investigators conclude that a patient’s symptoms should be investigated seriously and not be dismissed as poly-symptom somatic complaints as suggested by the Wolfe team of investigators. This is important because many of the symptoms fibromyalgia patients experience can be attributed to other treatable conditions that affects patient outcome.

I had to respond to the likes of the Duke University doctor, because she is not alone thanks to the likes of Dr. Wolfe who uses unapproved APA tools and handpicked databases for his research. I am not a scientist, nor a statistician, however I did conduct a study while in college, and I can tell you that doing an unbiased literature review is research 101. Choosing only literature that fits your hypothesis is flawed. Oddly enough, or not so oddly enough, I recently saw an article in a Physicians online journal “Healthcare Professionals Network” here that suggested Dr. Bennett endorsed the 2010 Wolfe Criteria carte blanche. In fact, the Bennett Alternative Criteria published in the September issue of Arthritis Care and Research, (Bennett, et al. 2014), includes a comparative analysis. Yet, this reporter made no mention that the 2013 Alternate Criteria outperformed the Wolfe, et al 2010 modified criteria in key areas. This partiality makes his report nothing short of propaganda.

Remember, if your physician is not helping you feel better physically, mentally, and emotionally, they have issues, not you! If they are not conducting a physical exam and considering common comorbid conditions to fibromyalgia, they are negligent. If you are harmed by their disregard for your complaints or inconsiderate statements, report them. (See the links on my website here.) Next time, record your visit. Plenty of chronically ill patients need to have counseling for dealing with their symptoms, but to need it because of a doctor that took an oath to do no harm is unacceptable.

postea: added after original blog post:

To whom it may concern—American College of Rheumatology… Criteria for Diagnosing Fibromyalgia, by Celeste Cooper

http://fmcfstriggerpoints.blogspot.com/2014/11/to-whom-it-may-concernamerican-college.html#.VFpus_nF86w

Resources:

Albrecht PJ, Hou Q, Argoff CE, Storey JR, Wymer JP, Rice FL. Excessive Peptidergic Sensory Innervation of Cutaneous Arteriole-Venule Shunts (AVS) in the Palmar Glabrous Skin of Fibromyalgia Patients: Implications for Widespread Deep Tissue Pain and Fatigue. Pain Med. 2013 May 20. doi: 10.1111/pme.12139. [Epub ahead of print]

Behm FG, Gavin IM, Karpenko O, Lindgren V, Gaitonde S, Gashkoff PA, Gillis BS. Unique immunologic patterns in fibromyalgia. BMC Clin Pathol. 2012 Dec 17;12(1):25. doi: 10.1186/1472-6890-12-25.

http://www.biomedcentral.com/1472-6890/12/25

Bennett RM. Opinion on preliminary guidelines for the clinical diagnostic criteria for fibromyalgia Practical Pain Management, July/August, 2010, Volume 10 (6) pages 76-79. 

Bennett R, Friend R, Marcus D, Bernstein C, Han BK, Yachoui R, Deodar A, Kaell A, Bonafede P, Chino A, Jones K. Criteria for the diagnosis of fibromyalgia: Validation of the modified 2010 preliminary ACR criteria and the development of alternative criteria. Arthritis Care Res (Hoboken). 2014 Feb 4. doi: 10.1002/acr.22301. [Epub ahead of print]

Buskila, D, Neumann, L, Alhoashle, A, and Abu-Shakra, M. “Fibromyalgia syndrome in men,” Seminars in Arthritis and Rheumatism 30, no. 1 (2000): 47–51.

Caro XJ, Winter EF. Evidence of abnormal epidermal nerve fiber density in fibromyalgia: Clinical and immunologic implications. Arthritis Rheumatol. 2014 Apr 9. doi: 10.1002/art.38662. [Epub ahead of print]

Castro-Sánchez AM, Matarán-Peñarrocha GA, López-Rodríguez MM, Lara-Palomo IC, Arendt-Nielsen L, Fernández-de-las-Peñas C. Gender differences in pain severity, disability, depression, and widespread pressure pain sensitivity in patients with fibromyalgia syndrome without comorbid conditions. Pain Med. 2012 Dec;13(12):1639-47. doi: 10.1111/j.1526-4637.2012.01523.x. Epub 2012 Nov 21.

Cook D. B., Lange G., Ciccone D. S., Liu W. C., Steffener J., and Natelson B. H. Functional imaging of pain in patients with primary fibromyalgia, Journal of Rheumatology, 31, no. 2 (2004): 364–78.

Cooper, C and Miller, J. (2010). Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection. Healing Arts Press: Vermont

Craggs JG, Staud R, Robinson ME, Perlstein WM, Price DD.Effective connectivity among brain regions associated with slow temporal summation of C-fiber-evoked pain in fibromyalgia patients and healthy controls. J Pain. 2012 Apr;13(4):390-400.

Flodin P1, Martinsen S, Löfgren M, Bileviciute-Ljungar I, Kosek E, Fransson P. Fibromyalgia Is Associated with Decreased Connectivity Between Pain- and Sensorimotor Brain Areas. Brain Connect. 2014 Aug 7. [Epub ahead of print]

Gonzalez B, Baptista TM, Branco JC, Ferreira AS.Fibromyalgia: antecedent life events, disability, and causal attribution. Psychol Health Med. 2013 Jan 17. [Epub ahead of print]

Kosmidis ML1, Koutsogeorgopoulou L1, Alexopoulos H1, Mamali I1, Vlachoyiannopoulos PG1, Voulgarelis M1, Moutsopoulos HM1, Tzioufas AG1, Dalakas MC2. Reduction of Intraepidermal Nerve Fiber Density (IENFD) in the skin biopsies of patients with fibromyalgia: A controlled study.

Light KC, White AT, Tadler S, Iacob E, Light AR. Genetics and Gene Expression Involving Stress and Distress Pathways in Fibromyalgia with and without Comorbid Chronic Fatigue Syndrome.  Pain Res Treat. 2012;2012:427869. Epub 2011 Sep 29.

Staud R, Craggs JG, Perlstein WM, Robinson ME, and. Price DD, “Brain activity associated with slow temporal summation of C-fiber evoked pain in fibromyalgia patients and healthy controls,” European Journal of Pain (March 2008).

Dr. Sean Mackey, assistant professor of anesthesia at the Stanford University Medical Center, “An Update on Fibromyalgia.” https://www.youtube.com/watch?v=jtc2JARVpPw&feature=em-subs_digest-vrecs  (accessed 10-30-2014).

Mary Ann Moon, “ACR 2010 criteria for fibromyalgia critiqued.” Family Practice News Digital Network.http://www.familypracticenews.com/news/journals/single-article/acr-2010-criteria-for-fibromyalgia-critiqued/31131c4db6bf3642dd8748c0ad23f08b.html (accessed, 10-29-2014).

Frederick Wolfe. Fibromyalgianess. Arthritis Care and Research. DOI: 10.1002/art.24553 Article first published online: 28 MAY 2009. http://onlinelibrary.wiley.com/doi/10.1002/art.24553/full

Fibromyalgia: an INTERVIEW with Dr Frederick Wolfe, University of Kansas School of Medicine. Medical Net News. 

Frederick Wolfe, Daniel J. Clauw, Mary-Ann Fitzcharles,  Don L. Goldenberg, Robert S. Katz, Philip  Mease, Anthony S. Russell, I. Jon Russell, John  B. Winfiled, and Muhammad B. Yunus. The American College of Rheumatology Preliminary Diagnostic Criteria for Fibromyalgia and Measurement of Symptom Severity. Arthritis Care & Research, Vol. 62, No. 5, May 2010, pp 600–610. DOI 10.1002/acr.20140

Wolfe F, Brähler E, Hinz A, Häuser W. Arthritis Care Res (Hoboken).Fibromyalgia prevalence, somatic symptom reporting, and the dimensionality of polysymptomatic distress: Results from a survey of the general population. 2013 Feb 19. doi: 10.1002/acr.21931. [Epub ahead of print]

Wolfe F, Clauw DJ, Fitzcharles MA, Goldenberg DL, Häuser W, Katz RS, Mease P, Russell AS, Russell IJ, Winfield JB. Fibromyalgia criteria and severity scales for clinical and epidemiological studies: a modification of the ACR Preliminary Diagnostic Criteria for Fibromyalgia. J Rheumatol. 2011 Jun;38(6):1113-22. doi: 10.3899/jrheum.100594. Epub 2011 Feb 1.

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Update as of April 2015

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

Celeste Cooper, RN

Author—Patient—Health Central Chronic Pain Pro —Advocate

New Website

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.

Fibromyalgianess is ALL in Our Head? My Correspondence with Dr Frederick Wolfe

March certainly went out with a bang for me as a patient and advocate.

In his INTERVIEW at Medical.net News, Fibromyalgia: an interview with Dr Frederick Wolfe, a red flag went up when I read that he promotes the work of Simon Wessley and the "research in the UK,"  particularly because of his comments on the FMa/® Test funding, Junk Science – Junk Ethics regarding the study by Behm et al, 2012, where Dr. Wolfe questions bias and funding. I wonder why he doesn't apply the same rules of proposed ethics to Dr. Wessley who has been pounded for his research because it was supported by questionable biased sources, or the funding for the Preliminary Proposed Diagnostic Criteria for Fibromyalgia (PPDCFM), supported by Lilly Research Laboratories?  Also of question to me is that one co-author (not known which one) has received a consulting honorarium from Daiichi Sankyo, a Japanese pharmaceutical company for the Wolfe, Brähler, Hinz, Häuser  study.  While I appreciate his willingness to correspond with me, I am uncertain as to what research Dr Wolfe considers unbiased and question if he interprets information and research to fit with his own conceptual framework. 

“JUNK ETHICS-JUNK SCIENCE”  From Dr Wolfe’s FMPerplex Blog
Excerpt from the Behm study (2012):
FM/a® is more than 93 percent sensitive, a sensitivity comparable to the HIV blood test. By comparison the rheumatoid arthritis blood test is only 65 percent sensitive. No medical test is 100 percent accurate.

Dr Wolfe’s comment: “Impossible from your study sample.”

While I acknowledge that I am not a scientist, I am confused as to why Dr. Wolfe believes this is impossible.  With respect to Dr. Wolfe’s opinions, I would ask that he consider the research of others on FM and ME/CFS, after all, “It can’t ALL be bad science.” 

In his own study, relevant to the interview in question (Wolfe, et al, 2013), the researchers use the PHQ-8, a questionnaire of eight somatic complaints that has not been approved and calls it the short version to the PHQ-15 (which has been approved for evaluation of psychiatric somatic disorders).  And this data has been fit into the symptom severity score of the criteria used to screen the participants.  Shouldn't his concerns be self reflected?  

After great deliberation and consideration, I have come to the conclusion that one can construct a study as they wish.  For instance, if one only looks for ducks, they will only look for ducks, even though the ducks are swimming along with a vast array of other aquatic birds.  So is it safe to say, that ducks are the only ones swimming in the pond?  If only one looks for somatic complaints without investigating that they may be tied to a comorbid disorder, it would be impossible to find the symptoms are tied to an overlapping disorder. 

From Wolfe et al, 2013, Fibromyalgia criteria and severity scales for clinical and epidemiological studies: a modification of the ACR Preliminary Diagnostic Criteria for Fibromyalgia.

“Among the limitations of our study was that we did not evaluate the possibility that patients might have had another disorder that could have caused their pain.”

Dr Wolfe appears to be focused on proving “fibromyalgianess,” or “polysymptomatic distress.” You will be interested to see what Dr. Wolfe has to say about this.


RE: March 27, 2013 correspondence with Dr. Frederick Wolfe Professor KU Med, Wichita

Dr Wolfe,

Thank you for letting me know why you are deleting my post. The post was not intended as a promotion of our book, rather, it was in answer to John Q’s question, “How do I know the information we provide is helpful?”  My co-author practices as a doctor in psychology and specializes is chronic pain. Our  philosophies are based on mental, emotional, physical and spiritual balance for living ones best life when struggling with incapacitating daily pain and bears out in the 2011 IOM report.  [Institute of Medicine REPORT “Relieving Pain in America].

The deleted post contained three reviews of our book and many research citations and other books at Fibromyalgia Perplex topic JUNK SCIENCE-JUNK ETHICS.

 Dr Wolfe kindly responded:

Rules about posting and articles:

About comments. We want this blog to be about research and discussions concerning fibromyalgia. To post to this blog you should be a published author, have other academic credentials, or would be welcomed as a discussant in an academic journal....

Your last comment is too much like blurb for your book. In addition, a few references might be OK, but not the long list you provided.

I read your INTERVIEW for your paper Fibromyalgia Prevalence, Somatic Symptom Reporting, and the Dimensionality of Polysymptomatic Distress: Results from a survey of the general population.  

 I do understand that there is no specific code in the ICD-10 (US ICD-9CM) for FM, rather it falls under myalgia and myositis, unspecific, 729.1, which can include any number of disorders. I can only access the abstract, so I would be interested in knowing what data collection tools were used. 

I also have grave concerns over the non-specific disease related symptoms being seen as somatic complaints, in the PPDCFM, when they can be linked to specific comorbid disorders and treated appropriately. Marla Silverman and I co-wrote an ADVOCACY PIECE over a year ago regarding our concerns for CFS/ME and FM in the new DSM-5, and now our concerns are born out. I fear it is because the PPDCFM specifically identifies somatic complaints associated with FM without tying them to the comorbid disorders other than IBS and hypothyroidism and that 40% of FM patients (as you report) fall into this DSM-5. This is significant.

Dr Wolfes email response: I don't share that concern or agree with you. However, the physician can certainly chose to exclude symptoms of known diseases if she choses. That's why we ask physicians to analyze the symptoms and make a judgement.

Dr Wolfe’s blog response: You misread the ACR criteria when you write the criteria “define symptoms of several autoimmune disorders to be considered.” The criteria refer to symptoms that are present in humans irrespective of disease. There is no clustering between FM and the diseases and syndromes you cite. FM occurs in all diseases and illnesses, but more often in diseases that cause pain or are worrisome. And it is common in osteoarthritis and back pain syndromes, which are not autoimmune at all.

In addition, the criteria do not ask about specific symptoms; they ask about the burden of symptoms. The long list attached to the criteria paper are presented as examples that physicians ‘might’ consider in assessing total burden. 

My response on the blog: http://www.cdc.gov/arthritis/basics/fibromyalgia.htm

My comment here: Dr. Daniel Clauw, a co-author of both the PPDCFM and the Fibromyalgia Criteria and Severity Scales for Clinical and Epidemiological Studies: A modification of the ACR Preliminary Diagnostic Criteria for Fibromyalgia study apparently does not agree. He and his co-authors talk a great deal about comorbid disorder in Improving the Recognition and Diagnosis of Fibromyalgia. (Arnold, et al., 2011.) This prompted the title for my previous blog, “Are We Judged by the Company We Keep?”

I am not at all surprised to find that there are more men affected than originally reported, and agree with your analysis as to why. Women are historically better about taking care of themselves because they are the caregivers. I would have liked to see some statistics on children, which are often overlooked. As for the pain threshold for men vs. women, I have seen studies that go both ways. [Buskila, et al, 2000, Castro-Sánchez, et al, 2012]. No doubt a cultural affect is different in the US [than Germany], because of the male macho culture, but we should consider this so they don’t suffer in silence.  I practiced as a board certified ED/ER nurse for over 20 years and I would rather take care of a female trauma victim than a young white male any day. [I meant this as no disrespect to young white males, this is merely an observation and a response to Dr. Wolfe’s biased response regarding women and pain in his interview, and the identified gender bias on pain in women in the IOM report].

As for traumatic initiating events, they are not limited to emotional trauma; physical trauma is just as significant as is long term chronic conditions, such as, childhood migraine, IBS, etc. There was also a recent study that dismissed this all together. [Gonzalez, et al., 2013]

That brings me to your last comment in the interview, for which I am perplexed, “There is a lot invested in what I would call a psycho-cultural illness.”   There seemed to be an undertow to the interview and the last statement left me flogging like a drowning victim in a vast sea without a life vest. 

I will keep any posts... See  Are we judged by the company we keep? My correspondence with Dr. Frederick Wolfe

(letter continued)

The patient must reach a level of acceptance so they can move forward, and in order to sustain momentum for healthy coping, they must have hope. When the patient-physician relationship is not one of mutual respect it becomes part of the problem.

Respectfully,
Celeste Cooper

Post Comment:

In due respect, Dr Wolfe did allow a few personal comments on his blog which he did not have to do, though my credentials do meet the blog requirements per Dr. Wolfe.  He has been respectful of my comments even though he is not in agreement.

In healing and hope, Celeste
Comments are not to replace medical advice and are purely my opinions.

Resources:

Arnold LM, Clauw DJ, McCarberg BH; FibroCollaborative. Improving the recognition and diagnosis of fibromyalgia. Mayo Clin Proc. 2011 May;86(5):457-64. doi: 10.4065/mcp.2010.0738. Review.

Behm FG, Gavin IM, Karpenko O, Lindgren V, Gaitonde S, Gashkoff PA, Gillis BS. Unique immunologic patterns in fibromyalgia. BMC Clin Pathol. 2012 Dec 17;12(1):25. doi: 10.1186/1472-6890-12-25.
http://www.biomedcentral.com/1472-6890/12/25

Bennett RM. Opinion on preliminary guidelines for the clinical diagnostic criteria for fibromyalgia Practical Pain Management, July/August, 2010, Volume 10 (6) pages 76-79

Buskila, D, Neumann, L, Alhoashle, A, and Abu-Shakra, M. “Fibromyalgia syndrome in men,” Seminars in Arthritis and Rheumatism 30, no. 1 (2000): 47–51.

Castro-Sánchez AM, Matarán-Peñarrocha GA, López-Rodríguez MM, Lara-Palomo IC, Arendt-Nielsen L, Fernández-de-las-Peñas C. Gender differences in pain severity, disability, depression, and widespread pressure pain sensitivity in patients with fibromyalgia syndrome without comorbid conditions. Pain Med. 2012 Dec;13(12):1639-47. doi: 10.1111/j.1526-4637.2012.01523.x. Epub 2012 Nov 21.

Cooper, C and Miller, J. (2010). Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection. Healing Arts Press: Vermont

Gonzalez B, Baptista TM, Branco JC, Ferreira AS.Fibromyalgia: antecedent life events, disability, and causal attribution. Psychol Health Med. 2013 Jan 17. [Epub ahead of print]

Frederick Wolfe, Daniel J. Clauw, Mary-Ann Fitzcharles,  Don L. Goldenberg, Robert S. Katz, Philip  Mease, Anthony S. Russell, I. Jon Russell, John  B. Winfiled, and Muhammad B. Yunus. The American College of Rheumatology Preliminary Diagnostic Criteria for Fibromyalgia and Measurement of Symptom Severity. Arthritis Care & Research, Vol. 62, No. 5, May 2010, pp 600–610. DOI 10.1002/acr.20140

Fibromyalgia: an INTERVIEW with Dr Frederick Wolfe, University of Kansas School of Medicine. Medical Net News.

Wolfe F, Brähler E, Hinz A, Häuser W. Arthritis Care Res (Hoboken).Fibromyalgia prevalence, somatic symptom reporting, and the dimensionality of polysymptomatic distress: Results from a survey of the general population. 2013 Feb 19. doi: 10.1002/acr.21931. [Epub ahead of print]

Wolfe F, Clauw DJ, Fitzcharles MA, Goldenberg DL, Häuser W, Katz RS, Mease P, Russell AS, Russell IJ, Winfield JB. Fibromyalgia criteria and severity scales for clinical and epidemiological studies: a modification of the ACR Preliminary Diagnostic Criteria for Fibromyalgia. J Rheumatol. 2011 Jun;38(6):1113-22. doi: 10.3899/jrheum.100594. Epub 2011 Feb 1.

For more resources see:
Are we judged by the company we keep? My correspondence with Dr. Frederick Wolfe