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Tuesday, April 2, 2013

Are we judged by the company we keep? My correspondence with Dr. Frederick Wolfe





RE: March 27, 2013 correspondence with Dr. Frederick Wolfe Professor KU Med, Wichita and lead author of the The American College of Rheumatology Preliminary Diagnostic Criteria for Fibromyalgia and Measurement of Symptom Severity. [Supported by Lilly Research Laboratories.]





  • [Brackets indicate comments which were not part of the original correspondence.]
  • PPDC = The American College of Rheumatology Preliminary Diagnostic Criteria for Fibromyalgia and Measurement of Symptom Severity. 
  • Links are embedded, click on the highlighted areas to access them.
  • Post comments at the end.
  • See notes for explanation of responses.


 “ I will maintain a sense of decorum and respect the right of others to have their own opinions. ” 
~ Celeste Cooper

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.  [See notes]

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. [See notes].

I also have grave concerns over the non-specific disease related symptoms being seen as somatic complaints, in the PPDC, 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 PPDC 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. [See notes]

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 I make to specific scientific papers and research as time allows. I am an RN, patient, published author of books and papers, and I am an advocate.  I am considered a fibromyalgia expert at Sharecare, and participate in PAINS,  I am NOT a researcher, and I don't represent myself as one, though as an educator and past author of continuing education programs for the Missouri State Board of Nursing, I am well aware of literature review.  I worked closely with many hospital department heads as hospital-wide educator (past member of ASHET) and was the training center director for the American Heart association and affiliate faculty for BLS and ACLS. My career was full and rewarding until the pain became too severe and my short term memory became severely affected (documented on a forensic neuropsychological exam).  It is significant and the primary reason I do what I do in an effort to retain what I have.  I have experienced migraines, IBS, joint hypermobility and bladder difficulties since childhood, followed by Raynauds, levido reticularus, in young adult hood, and severe cervical radiculopathy since age 35. I have had many sports and on the job injuries resulting in many orthopedic shoulder and knee surgeries. Later I found out I have Hashimoto's thyroiditis and that I never experience stage III or IV (slow wave) sleep progression and moved my legs 180 times in four hours. I do have loss of HRV which is documented.  I would suggest that the appropriate tests must be implemented to explain “somatic complaints” so an investigation of other causes and appropriate treatments can be initiated to improve patient outcome. I have asked myself a thousand times, as you suggest in your interview, which came first, the chicken or the egg? 

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 Comments: (Notes following)

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

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 PDDC, 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. 

Of concern, is that many studies are funded by parties interested in promoting a particular product or opinion, even some of those in the resources for this blog.  We need unbiased research funding. We should support those that support this type of research.

 “Junk Ethics-Junk Science” Excerpt from the Behm study:  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.  My conclusions are “It can’t ALL be bad science.”

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

NOTES:

Deleted Post:

The deleted post contained three reviews of our book and many research citations and other books as an answer to a posted question to me by John Q. 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. We make these somewhat arbitrary rules to try to exclude the general, non-scientific public. We welcome comments by all scientists and social scientists, not just those who are physicians. This blog is moderated, meaning that the editors decide what will appear. In general, we will not censor on-topic scientific posts provided authors meet the above guidelines. If you don’t fit our guidelines and think you have something to contribute, send the editors an email.


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.


Study Data:

Dr Wolfe kindly provided me the published article in Arthritis and Research, Vol. 65, No. 5, May 2013, pp 000–000. DOI 10.1002/acr. Excerpt as follows:

Design and subjects.
A representative sample of the German general population was selected with the assistance of a demographic consulting company (USUMA…)… Data collection … May and June 2012. A first attempt was made at 4,448 addresses, and 2,515 persons (56.7%) participated fully. Reasons for nonparticipation included the following: 3 unsuccessful attempts to contact the household or selected household member (12.9%), the household or selected household member declined to participate (13.7%), or the household member was on a holiday break (1.1%). Furthermore, 0.5% of the participants were excluded because they were not able to follow the interview due to illness, as were 3.3% who refused to finish the interview. To study the adult population, we excluded subjects who were #18 years of age. Three subjects who had missing data for the fibromyalgia diagnosis variables were also excluded. After these exclusions, a total of 2,445 subjects were included in the analysis.

PPDC identifies somatic complaints associated with FM without tying them to the comorbid disorders:

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: http://www.cdc.gov/arthritis/basics/fibromyalgia.htm

Resources:

Aaron, L. A. Burke, M. M., and Buchwald, D. (2000, January 24). Overlapping conditions amoung patients with chronic fatigue syndrome, fibromyalgia and temporomadibular disorder. Archives of Internal Medicine, 160(15), pp. 2398-2401.

Alonso-Blanco C, Fernández-de-Las-Peas C, de-la-Llave-Rincón AI et al. 2012. Characteristics of referred muscle pain to the head from active trigger points in women with myofascial temporomandibular pain and fibromyalgia syndrome. J Headache Pain. [Aug 31 Epub ahead of print]. 

Bazzichi L, Rossi A, Zirafa C, Monzani F, Tognini S, Dardano A, Santini F, Tonacchera M, De Servi M, Giacomelli C, De Feo F, Doveri M, Massimetti G, Bombardieri S. Thyroid autoimmunity may represent a predisposition for the development of fibromyalgia?  Rheumatology International, Nov 18, 2010.

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 

Berstad A, Undseth R, Lind R, Valeur J. Functional bowel symptoms, fibromyalgia and fatigue: A food-induced triad? Scand J Gastroenterol. 2012 May 18. [Epub ahead of print]

Bullones Rodríguez MÁ, Afari N, Buchwald DS; Evidence for overlap between urological and nonurological unexplained clinical conditions. J Urol. 2013 Jan;189(1 Suppl):S66-74. doi: 10.1016/j.juro.2012.11.019.

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.

Cakit BD, Taskin S, Nacir B, Unlu I, Genc H, Erdem HR. Comorbidity of fibromyalgia and cervical myofascial pain syndrome. Clin Rheumatol. 2010 Apr;29(4):405-11.

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.

Chung JH, Kim SA, Choi BY, Lee HS, Lee SW, Kim YT, Lee TY, Moon HS. The association between overactive bladder and fibromyalgia syndrome: A community survey. Neurourol Urodyn. 2012 Jun 5. doi: 10.1002/nau.22277. [Epub ahead of print

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

Dardano A, Bazzzichi L, Bombardieri S, Monzani F. Symptoms in euthyroid Hashimoto's thyroiditis: is there a role for autoimmunity itself? Thyroid. 2012 Mar;22(3):334-5. Epub 2012 Feb 2.

Doğru MT, Aydin G, Tosun A, Keleş I, Güneri M, Arslan A, Ebinç H, Orkun S. Correlations between autonomic dysfunction and circadian changes and arrhythmia prevalence in women with fibromyalgia syndrome. Anadolu Kardiyol Derg. 2009 Apr;9(2):110-7.

Evans RW, de Tommaso M. 2011. Migraine and fibromyalgia. Headache. 51(2):295-299

Fraga BP, Santos EB, Farias Neto JP, Macieira JC, Quintans LJ Jr, Onofre AS, De Santana JM, Martins-Filho PR, Bonjardim LR. Signs and symptoms of temporomandibular dysfunction in fibromyalgic patients. J Craniofac Surg. 2012 Mar;23(2):615-8

Frieri M, Argyriou A. Is there a relationship between fibromyalgia and rhinitis? Allergy Asthma Proc. 2012 Nov-Dec;33(6):443-9. doi: 10.2500/aap.2012.33.3596.

Furlan R, Colombo S, Perego F, Atzeni F, Diana A, Barbic F, Porta A, Pace F, Malliani A, Sarzi-Puttini P.  Abnormalities of cardiovascular neural control and reduced orthostatic tolerance in patients with primary fibromyalgia. J Rheumatol. 2005 Sep;32(9):1787-93.

Ge HY. Prevalence of myofascial trigger points in fibromyalgia: the overlap of two common problems. Curr Pain Headache Rep. 2010 Oct;14(5):339-45.  

Goebel A, Buhner S, Schedel R, Lochs H, Sprotte G. Altered intestinal permeability in patients with primary fibromyalgia and in patients with complex regional pain syndrome. Rheumatology (Oxford). 2008 Aug;47(8):1223-7. doi: 10.1093/rheumatology/ken140. Epub 2008 Jun 7.

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]

Hermanns-Lê T, Piérard GE, Angenot P. [Fibromyalgia: an unrecognized Ehlers-Danlos syndrome hypermobile type?] Rev Med Liege. 2013 Jan;68(1):22-4.

Holman AJ. Postional cervical spinal cord compression and fibromyalgia: a novel comorbidity with important diagnostic and treatment implications. J Pain. 2008 Jul;9(7):613-22. Epub 2008 May 22.

Hongling Nie, Pascal Madeleine, Bente Danneskiold-Samsoe, Thoms Graven-Nielsen, Lars Arendt-Nielsen. Contribution of the local and referred pain from active myofascial trigger points in fibromyalgia syndrome. 2009. Pain.147; 233-240

Iannuccelli C. Fibromyalgia showed greater association with lupus than Sjögren’s syndrome. Clin Exp Rheumatol. 2012;30:S117-S121.

Kashikar-Zuck S, Zafar M, Barnett KA et al. 2013. Quality of life and emotional functioning in youth with chronic migraine and juvenile fibromyalgia. Clin J Pain. [Feb 26 Epub ahead of print]. 

Kim SE, Chang L. Overlap between functional GI disorders and other functional syndromes: what are the underlying mechanisms? Neurogastroenterol Motil. 2012 Oct;24(10):895-913. doi: 10.1111/j.1365-2982.2012.01993.x. Epub 2012 Aug 2.

Kindler LL, Bennett RM, Jones KD. Central sensitivity syndromes: mounting pathophysiologic evidence to link fibromyalgia with other common chronic pain disorders. Pain Manag Nurs. 2011 Mar;12(1):15-24.

Kingsley JD. Autonomic dysfunction in women with fibromyalgia. Arthritis Res Ther. 2012 Feb 20;14(1):103. [Epub ahead of print]

Kucuksen S, Genc E, Yilmaz H et al. 2013. The prevalence of fibromyalgia and its relation with headache characteristics in episodic migraine. Clin Rheumatol. [Feb 27 Epub ahead of print]. 

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Lerma C, Martinez A, Ruiz N, Vargas A, Infante O, Martinez-Lavin M. Nocturnal heart rate variability parameters as potential fibromyalgia biomarker: correlation with symptoms severity. Arthritis Res Ther. 2011 Nov 16;13(6):R185. [Epub ahead of print]

Mork P, Nilsson J, Lorås H, Riva R, Lundberg U, Westgaard R. Heart rate variability in fibromyalgia patients and healthy controls during non-REM and REM sleep: a case-control study. Scand J Rheumatol. 2013 Feb 20. [Epub ahead of print]

Pay S, Calgüneri M, Calişkaner Z, Dinç A, Apraş S, Ertenli I, Kiraz S, Cobankara V. Evaluation of vascular injury with proinflammatory cytokines, thrombomodulin and fibronectin in patients with primary fibromyalgia. Nagoya J Med Sci. 2000 Nov;63(3-4):115-22.

da Cunha Ribeiro RP, Roschel H, Artioli GG, Dassouki T, Perandini LA, Calich AL, de Sá Pinto AL, Lima FR, Bonfá E, Gualano B. Cardiac autonomic impairment and chronotropic incompetence in fibromyalgia.  Arthritis Res Ther. 2011 Nov 18;13(6):R190. [Epub ahead of print]  

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da Silva LA, Kazyiama HH, de Siqueira JT, Teixeira MJ, de Siqueira SR. High prevalence of orofacial complaints in patients with fibromyalgia: a case-control study. Oral Surg Oral Med Oral Pathol Oral Radiol. 2012 Aug 17. [Epub ahead of print] 

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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. 
 (acceessed 3-27-13).

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


2 comments:

  1. Celeste and all: I read through most of this post and I find it astounding that I did not see hemochromatosis mentioned one time - maybe I missed it and if so, my apology. I invite you to visit my web page at www.ibs-hemochromatosis-fibromyalgia-cfids.com and take a look at my papers to see where I am coming from. I know a little about this mess in that I was diagnosed to have fibromyalgia some 60 years ago and latter to be diagnosed having hemochromatosis. Please don't try to tell me that the two conditions don't go together. About 40 % of the people diagnosed for hemochromatosis have been previously been diagnosed to have fibromyalgia. Before making a diagnosis of fibro, iron overload or hemochromatosis must be ruled out. I hope this helps and gets a few more folks diagnosed who have hemochromatosis.

    ReplyDelete
    Replies
    1. Leslie, the symptoms of hemochromatosis could be mistaken for many things. You are absolutely right, it should be considered by the physician and ruled out any time a patient expresses symptoms of joint pain, weakness and fatigue. Is it? Probably not. This is exactly why we need a biomarker, despite some rheumatologist telling me a biomarker is not necessary. Dr. Gillis has done a follow up study on the FMa/test that will be published soon. The test was found to be 93% accurate in diagnosing FM compared to other autoimmune rheumatological disorders.

      We can say the same for thyroid disease and FM and CFS/ME. Specific blood work for autoimmune thyroiditis, which is being studied in relationship to FM, is not done. I happen to be one of the patients that fell through the cracks. Low dose levothyroxine got me out of bed.

      Thank you for sharing, and I hope patients, myself included, will make sure their doctor has checked them for hemochromatosis. The problem is that most physicians want empirical evidence, which is lacking.

      Delete

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