Diagnostic
Criteria
Rosner
Rebuttal
Central
Nervous System
Compare Symptoms
Dr.
Heffez Information
Introduction
to NFRA
NFRA
Symposiums
Awareness Bracelet
Awareness
Pin
Gifts
and Memorials
Calendar
of Events
Resources
& Web Links
Patient
Organizations
December 27, 2000
Jerome
Groopman
The New Yorker Magazine
4 Times Square
New York, NY 10036
Dear Mr. Groopman,
We read with interest Hurting All Over in the November 13 issue of The New Yorker Magazine. While the article is exquisitely written, there are many inaccuracies and misconceptions portrayed to the public as truths. The National Fibromyalgia Research Association (NFRA) is a patient advocacy organization whose purpose is to advance fibromyalgia public awareness, FM education and scientific research. Therefore, we feel a responsibility on behalf of millions of patients to clarify some of the conveyed misconceptions in this article.
The NFRA has presented two fibromyalgia research symposiums since 1997. We have supplied syllabi of both meetings for your review. The objective of these conferences has been for scientists from different disciplines who have shown an interest in FM research to meet and share their avenues of investigation. The Subgroups in Fibromyalgia symposium was held in September 1999 and brought together fifteen doctors, including rheumatologists, neurologists, neurosurgeons, and radiologists. At this meeting, the central nervous system involvement in fibromyalgia was scrutinized from several different angles including cervical spinal cord compression and Chiari malformation; wind-up and functional MRI investigations were also explored. Through scientific investigations like the ones presented at this symposium, most of the rheumatology researchers now agree that FM is probably a neurological condition. Dr. I. Jon Russell, from the University of Texas Health Science Center at San Antonio, made an announcement at the American College of Rheumatology meeting in 1998 confirming this theory.
Your article first insinuated that fibromyalgia is a viable physical illness and then ended by postulating that it is perhaps some kind of psychological abnormality that can be influenced by exercise and cognitive restructuring. This is perhaps a normal view of this illness, especially in the medical world. A survey done by Dr. John Renner (recently deceased), president of the National Council of Reliable Health Information in Independence, Missouri, two years ago, showed that 50% of American medical doctors do not view fibromyalgia as a credible, physical malady. These physicians, besides being the top in their respective medical fields, were also educators at our country’s leading medical schools, where fibromyalgia information is still not taught to students. Based on this kind of information, it is not surprising that so few medical professionals recognize FM, let alone know how to treat it. Articles such as yours erode the foundation that FM researchers continually try to build.
The following information shared with your readers was either grossly out of date or missing.
-
You mentioned that research showing increased levels of Substance P was poorly done and probably not accurate. Interesting, considering that this research, first conducted by rheumatologist, Dr. I. Jon Russell, at the University of Texas Health Science Center at San Antonio, has now been replicated three times, once at the University of Alabama by Dr. Laurence Bradley’s group and twice more by investigators in Europe. In an exemplary study, nerve growth factor has also been shown to be out of balance by Dr. Alice Larson at the University of Minnesota. The comments made in your article smack of the conference held in Vancouver, BC in 1993. Dr. Wolfe chaired that meeting and helped write a devastating consensus document used in Canada to deny fibromyalgia claims for several years. Many of the attending American doctors refused to sign the consensus paper and chose to rewrite the document, which was published in the Arthritis and Rheumatism Journal.
-
No mention of cervical spinal cord compression and/or Chiari malformation and their connection to fibromyalgia and chronic fatigue syndrome was made in your article. Please review the abstracts by Dr. Michael Rosner and Dr. Dan Heffez in the symposia syllabi we have included with this letter. A study funded by NFRA at the Oregon Health Sciences University and Georgetown University demonstrated that 75% of the fibromyalgia patients had abnormal neurological examinations that correlated with MRI findings compared to 10% of the healthy control subjects. Dr. Michael Rosner was invited to make a podium presentation of this information at the American College of Rheumatology meeting in Philadelphia on October 30. ABC’s 20/20 program, which aired on March 10, 2000 and narrated by Dr. Tim Johnson, covered this topic. For your information, Mrs. Pam Scott, wife of NFRA founder, Mr. Jack Scott, diagnosed with FM approximately nine years ago, had craniectomy surgery in December 1997 by Dr. Dan Heffez at the Chicago Institute of Neurosurgery and Neuroresearch. She has regained approximately 75% of her life since surgery and continues to improve. For people misdiagnosed with fibromyalgia who actually have a neurological condition, this information is filled with hope.
-
The work being done by Dr. Peter Rowe, a pediatric cardiologist at Johns Hopkins University, concerning neurally mediated hypotension (NMH) and FM, was also missing from your report. Studies being conducted by Dr. Rowe, have disclosed that about 30% of FM patients suffer from NMH and that administration of low blood pressure medications and increases in salt intake can dramatically affect fibromyalgia symptoms.
-
Other areas of research missing from your article include:
· Wind-up – abnormal pain processing in FM. Dr. Roland Staud from the University of Florida is conducting this NIH funded research study. He presented the results of this investigation at the ACR meeting in October 2000 and held a news conference concerning the outcome of this study that demonstrated nociception in FM patients.
· Abnormal functional MRI studies at both Georgetown University by Dr. Daniel Clauw and at the University of Texas Health Science Center in San Antonio by Dr. I. Jon Russell, have revealed further proof of abnormal pain perception, perhaps allodynia, in FM patients. Dr. Clauw’s study was presented at a 1999 pain conference in Germany and at the 1999 American Pain Society meeting in Ft. Lauderdale.
· Abnormal blood flow and its correlation to elevated levels of Substance P in conjunction with pain levels in FM patients. Dr. Laurence Bradley from the University of Alabama was the lead author on this paper, which has been presented at several prestigious medical meetings.
· NIH funded work on the HPA axis, including abnormal growth hormone and cortisol levels in FM patients, by Dr. Leslie Crofford at the University of Michigan, Ann Arbor. Studies by Dr. Robert Bennett at the Oregon Health Science University have also demonstrated low growth hormone in FM patients.
· Familial predisposition to fibromyalgia by Dr. Muhammad Yunus at the Unversity of Illinois at Peoria. This study was partially funded by NFRA resulting in NIH funding a full genetic study.
· Research papers showing further bio-chemical imbalances such as:
thyroid
zinc
5-HT3
magnesium
nitric
oxide
opioid receptor values
Also in your article, you mentioned Dr. Robert Bennett’s presentation of the phantom limb phenomenon at a patient conference hosted by Dr. Don Goldenberg. Later in your article, Dr. Thomas Bohr rebukes this idea stating, “With phantom limb, you have a real lesion – the limb has been cut off!” You never once mention neuroplasticity, which was the phenomenon Dr. Bennett was describing to this lay audience. He used phantom limb pain as an analogy to explain this complicated theory. There are many researchers who believe that fibromyalgia symptoms might be the result of some type of neuroplasticity, as yet not fully understood.
Dr. Frederick Wolfe’s vacillating theories about FM have been detrimental to patients and doctors struggling to better understand and treat this debilitating illness. Dr. Wolfe’s overall negative tone in this article is pathetic, considering he is supposed to be one of the handful of doctors researching fibromyalgia. Perhaps Dr. Wolfe’s riding the fence has something to do with being paid by insurance companies for his “fibromyalgia expertise.” Insurance companies also employ him in the capacity of performing independent medical examinations (IMEs) on patients seeking disability for fibromyalgia. Maybe that is why several statements recorded in your article pertaining to Dr. Wolfe are inaccurate. For instance, it is difficult to accept that in Wichita prior to the 1990 ACR Diagnostic Criteria, fibromyalgia accounted for “less than twenty-five percent of Social Security disability awards” and that after 1990, “that figure increased to forty-six percent,” when prior to April of 1999 there was no ICD-9 code to designate fibromyalgia for Social Security Disability. Most often, fibromyalgia sufferers, who have been granted SS have been given the disability designation for another illness, such as depression or anxiety disorder, never for FM. Therefore, the figures quoted in your article are either inflated or inaccurate. Another erroneous insinuation by Dr. Wolfe is that people become sick, just so they can claim disability or other financial compensation. It has been shown that even after fibromyalgia patients are awarded disability, their pain and fatigue do not subside. Their quality of life is still shattered. These people do not receive a huge Social Security monetary windfall and then party their lives away. They are still miserable. However, if granted SS, they might be able to provide food and shelter for their children and have access to medical care that had previously been impossible for them to obtain.
As to the study being conducted by Dr. Rooks in Boston. This is old news. Dr. Robert Bennett set up the first multi-disciplinary fibromyalgia treatment plan at the Oregon Health Sciences University in the late 1980s. Along with Dr. Bennett, Dr. Sharon Clark, an exercise physiologist, Dr. Carol Burkhart, a psychologist, and a team of other professionals, worked diligently with FM patients to improve their physical and mental well being. The program helped develop an exercise regimen, offered appropriate medications for sleep and pain, and psychological counseling to help patients cope with life changes resulting from fibromyalgia. Like Dr. Rooks’ program, patients were encouraged in a positive manner to get better and steps were taken to help them achieve their goals. Some of the patients who participated in this six-month protocol did improve. However, eventually insurance companies refused to pay for the program resulting in its dismantling. We noticed that 22% of Dr. Rooks’ patients did not finish his program. Dr. Bennett had similar problems. Some patients were just too sick to complete the regimen, which is often the case in any fibromyalgia study that encourages exercise.
Lastly, after reading the information about your friend, Liz Albright, we are convinced she should be seen by either Dr. Michael Rosner, now in private practice in Hendersonville, NC, or, by Dr. Dan Heffez at the Chicago Institute of Neurosurgery and Neuroresearch for a Chiari and/or cervical stenosis examination and evaluation. When Liz had her sinus infection surgery, her head was more than likely hyper-extended for the anesthetic, causing a cervical spinal cord compression problem. If you truly want to help her, get Liz into one of these doctors right away, the outcome could be dramatic. Also, visit our web site: www.nfra.net regarding this issue.
We hope this information has given you a broader view of fibromyalgia and the research being done by dedicated doctors in an effort to help alleviate pain for millions of people. If you have questions or need further information, please contact our office at (800) 574-3468.
Sincerely,
Jack Scott Rae Marie Gleason Lana Lediaev
FMS Activist FMS Activist FMS Activist
National Fibromyalgia
Research Association
PO Box 500, Salem, OR 97308
