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.

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.


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


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Unknown said...

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.

The Pained Ink Slayer said...

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.

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