Friday, April 5, 2013

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 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:
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.

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.


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.

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


irene speaks said...

Great job and glad to see it.
First, I wrote a post already about Dr. Wolfe, apparently reacting to the same interview as you have, my post being
Thank you for posting this. Dr. Wolfe needs to be exposed as a biased, intellectually flawed researcher who obviously has an agenda. He hides behind convoluted logic and a selective review of the medical literature.
As the old saying goes, "if you can't dazzle them with brilliance, baffle them with bullsh*t." Need one say more?

JQ said...

Hi Irene and Celeste. Unfortunately the FM Construct (1990) collapsed like a house of cards when the central criterion - the tender point count - was no longer deemed to be necessary for purposes of classification and diagnosis. Tender points were thought to be important in dispelling accusations that people's pain was psychogenic. They were more tender than expected in parts of their body where they did not necessarily experience pain. In defense of Professor Wolfe, the reasoning behind this action in 2011 was that most doctors did not examine their patients for tender points and were awarding them the FM label solely on the basis of their symptoms. Yes, a lot of others will feel the same way as you - "like a drowning victim in a vast sea without a life vest." I have tried very hard to contribute positive inputs to Professor Wolfe's blog, but so far they appear to have fallen on "deaf ears".

1st World Problems said...

Er... you do realise that it was Wolfe who invented the term 'fibromyalgia', don't you?

He only did it to help patients with somatisation disorders believe that they had a "real" disease, so that they'd get better.

Instead it spread via the internet, and now you can't make three mouse clicks without bumping into one of you.

Somatisation disorders are real, and produce real pain and distressing symptoms. Mental illness *is* a physical illness, the brain is part of the body, not floating off to the side in a balloon.

You're only hurting yourselves ultimately. I'd say it was like you didn't want to get better, but that's the point, isn't it?

Anonymous said...

Oh my...folks that think this is made up...really? Okee dokee. Please, I would hope that strong minds from both camps read this. I'm going to make one statement that will support both lines of thinking - although for the sufferers in this string, it is poignant to the point of tears. 16 years ago I was diagnosed with the 'Devil's Trifecta' of FM/CFS/MFS and was treated with only psychiatric medicine, even though I had never had a prescription in my life, even during three births. (Raised by chiropractor, delivered at free-standing birth center) No psychiatric meds when I experienced the 91/2 mos of my son's life. So when I hurt, I went to the doctor. I just thought..well, it never occurred to me that a first series of appts in my life would net me a psychiatric treatment protocol. Two years ago, I was diagnosed with lupus and others. After 15 yrs of being treated psychiatrically, my honest FIRST reaction was, "Well, at least they'll believe THIS." Truly sad conditioned response, cultivated over decades of treatment by 'healers' such as Dr. Wolf. Sad indeed

ctravlngrl said...

Celeste, I can't thank you enough for your outspoken research & findings on behalf of Chronic Pain sufferers, especially those with fibromyalgia. The old saying holds so much truth, and I say this to those who haven't "walked in my shoes". I also agree there are more men that are afflicted with this than is reported for obvious reasons. Thank you, Celeste, for covering all our bases and being there for us. And, thank you for your books that have helped me tremendously. -Corrine

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