The U.S. government's CFS Coordinating Committee met in Washington, D.C., on 22 October, 1997.
At the meeting, Dr. Nancy Klimas reported on a survey conducted by the AACFS regarding changing the name CFS to a more appropriate one. Forty-eight replies had been received, the results indicating that most of the medical professionals who were polled thought that the name should not be changed now because no cause or marker had yet been found. They agreed that the best forum for eventually changing the name would be a consensus of researchers and clinicians with patient group representation.
Kristin Thorson, president of the American Fibromyalgia Syndrome Association (AFSA), shared the results of a survey that her organization had done of its own members. Thorson cautioned that not all of her organization's members identified themselves with CFS. A plurality of the physicians polled said that the name CFS should not be changed at this time. Thorson recommended that need for a name change may become more acceptable as soon as more is known about the illness.
Kim Kenney off the CFIOS Association discussed her organization's poll of its members. While there was a majority sentiment for changing the name, no specific alternative had majority support. Kenney mentioned an interesting medical article about another illness, reflex sympathetic dystrophy (RSD) which was recently redefined by scientists and whose name was then changed to complex regional pain syndrome (CRPS). Kenney said that situation had many parallels to CFS. (See "Reflex sympathetic dystrophy: changing concepts and taxonomy," Stanton-Hicks, M. , at. al. Pain, 1995, 63:127-133.)
In the Committee's discussion, NIH's George Curlin stated that the National Library of Medicine's Index Medicus is active in responding to changes of name as they appear in the
medical literature; however, Dr. Curlin commented, gaining acceptance for a new name by that means alone will probably be slower than finding a research breakthrough. This doesn't meet the needs of the patients, but the time for a change is, sadly, not now, said Curlin.
Prof. Anthony Komaroff off Harvard said that CFS is a terrible name, but it would not be wise to pick a new name until there was a good alternative.
Dr. Brian Mahy of CDC moved that the Committee's working group on the name-change be disbanded and there were no objections. Komaroff said that the Committee should take up the name-change issue at every meeting from now on, and this seemed to be accepted. He stated that there might be enough evidence some day to warrant naming the illness after some neuroendocrine dysfunction, and that he personally would vote for such an alternative when the evidence becomes more solid.
Next, the Committee debated the value off Suhadolnik's research on a potential biomarker for CFS. Prof. Komaroff discussed new information he had obtained about Suhadolnik 'a work, and about a confirmatory study involving 50 patients (and 50 healthy controls) soon to be published. It seems that in Suhadolnik's initial work, the correlation between the marker and CFS
patients was not one-for-one, as preliminary reports had suggested. Instead, many patients showed negative on the test and several healthy controls showed positive. CDC's William Reeves
expressed doubt that Suhadolnik's test would prove to be very useful and that no-one should be overly dazzled by such cutting edge research. Dr. Nancy Klimas said that Suhadolnik's research was still very impressive despite the new clarifications. Dr. Mahy, acting as chair of the committee, indicated that he intended to invite Suhadolnik to give a presentation at the next CFSCC semi-annual meeting.
Dr. William Reeves of CDO submitted the following statement at the meeting:
"During fiscal year 1997 we began establishing a Molecular Epidemiology Group as part of our CFS research program. This Molecular Epidemiology laboratory component will help us better address our research program's objectives to define the pathogenic mechanisms involved in OPS and to identify molecular markers for disease and disease prediction. Realizing these two aims is essential to developing control strategies. Defining the pathogenic mechanisms involved in CFS and identifying risk factors amenable to intervention has proven difficult because, in spite of excellent well-focused research, CFS has no consistent physical signs, no anatomic lesion has been identified, and there are no specific laboratory markers. We intend that the Molecular Epidemiology effort will identify pathogenic changes associated with CFS that have eluded conventional analysis.
"Since research to date has used a traditional strategy of testing specific hypotheses, we have elected to use an open-ended approach. This will employ molecular genetic profiling techniques to search for evidence of up-regulated or down-regulated genes in CFS patients. We will first test white blood cells from clinically evaluated participants in the Wichita study. This will provide a range of subjects at all stages off CFS and various comparison groups. We will analyze messenger RNA (mRNA) which directly reflects gene expression. White blood cells have immunologic and neuroendocrine functions and reflect various other physiologic perturbations. Thus, we should detect changes that reflect pathogenesis. Any changes may also reveal diagnostic markers, and should help us identify testable hypotheses concerning causality off CFS.
"As I noted, we began establishing the Molecular Epidemiology group in fiscal year 1997, and we have largely accomplished these initial goals. In fiscal 1998 we will fine-tune our methods in model systems established in our laboratory and will begin to test samples taken at enrollment and 12 months into the Wichita study. In 1999 we will be able to test samples from Wichita collected at 24 months. Simultaneously, we will be developing and pilot-testing other laboratory methods.
"We have put an excellent laboratory team into place headed by Drs. Suzanne Vernon and Elizabeth Unger. They combine expertise in molecular biology and clinical pathology and share considerable experience investigating chronic illness caused by DNA and RNA viruses. They have recruited two post-doctoral fellows and are advertising for a third. The laboratory effort is additionally
supported by two senior laboratory technicians and two laboratory assistants.
In other news, the recent physician education teleconference of September 18, 1997, was reviewed and plans were discussed for a follow-up conference. The AHEC government network alone reached at least 1,000 viewers, but data was still being analyzed that will eventually indicate how many off those viewers were health professionals.
The Committee's previously planned NIH workshop on pediatric CFS was set aside due to lack off sufficient science, and in its place there will be a research conference on that same topic to be held in association with the next meeting off the CFSCC.
Kim Kenney of the CFIOS Association requested that ways be found to enable patients who cannot travel to present testimony to the Committee by other means such as by submitting videotapes. The Committee chairman said that this would be explored, although there was a question as to whether the CFSCC should be a central sounding board for patient views and that the Committee's focus should be on advising the U.S. Department of Health and Human Services on its policies regarding CF(ID)S. The next CFSCC meeting was set for April 28-29, 1998, in Washington.
Thanks to Roger Burns and CFS-News for this report.
It could have been better, but it could have been worse - a lot worse. The much anticipated and much discussed OFIOS video teleconference took place on Thursday, September 18, 1897. And overall, despite fears that the conference would disseminate controversial and erroneous
misiniformation to physicians across the country, it wasn't the total disaster some if us had predicted. Despite a pretty rocky beginning, the HHS video teleconference can be considered a moderate success.
As expected, the first half hour of the conference over-emphasized some the psychological manifestations of the illness. Conference participants Mark Demitrack (Eli Lilly) and Michael
Sharpe (a Simon Wesseley follower) focused primarily on psychiatric symptoms. And Sharpe spent an inordinate amount of time promoting Cognitive Behavioral Therapy (CBT). On the plus side, he was careful not to claim that C8T "cures" the disease; unfortunately, this message may have been lost on conference viewers. Another problem with the conference was the failure to adequately address diagnosis: only a very quick discussion off the CFIDS "case definition" and a cursory description off physical and laboratory examinations left many viewers as in the dark about diagnosing patients as they were before seeing the confference. Participants also neglected the area of treatment (with the notable exceptions of CBT and Physical Therapy), mentioning the use of NSAIDS and tricyclic antidepressants only in passing. Pain management, a major issue to many PWC's, was almost totally ignored.
There were some bright spots at the conference as well, which helped balance out the picture viewers off the event came away with. One off these was the participation of conference organizer, former Assistant Secretary off Health, Phillip Lee. Dr. Lee has been a vocal CFIDS advocate, and his presentation emphasized that CFIDS is a serious, many times devastating and debilitating, physical disease which deserves the respect, compassion, and interest off U.S. physicians.
Other highlights included Dr. Deluca's presentation of research conducted at Dr. Ben Natelson 's NJ
CFIDS clinic showing that CFIDS patients with NO evidence of depression or other mood disorders
exhibited significant cognitive dysfunction. Harvard's Anthony Komaroff pointed out that just because
the etiology and pathophysiology of CFIDS are not yet understood, his research has convinced him that CFIDS is a serious physical ailment. He emphasized recent studies which have revealed immunological abnormalities, brain lesions on MRI, and blood-flow abnormalities on SPECT scan. Peter Rowe (Johns Hopkins) discussed neurally mediated hypotension and post orthostatic tachycardia syndrome (POTS) -- which he found in a majority of the CFIDS patients he studied
and explained tilt table testing as well as the use of florineff to treat these problems. Finally, the
presentation by NIH's Stephen Straus was surprisingly good: Straus focused on his research which has revealed HPA axis dysfunction in CFIDS patients.
Probably the most interesting and effective part off the conference was Paul Levine's (AACFS) interviews with three CFIDS patients including MPWC obstetrician Frankie Billingslea. The patients' descriptions of the illness, its symptoms, and how it has affected their lives was particularly well done and gave physicians and other health care practitioners a good idea off how CFIDS patients might appear in their offices and exam rooms. Expanding this segment to include a detailed physical exam and discussion off appropriate laboratory testing would have made the presentation even stronger
MPWC's would like to publically thank conference organizers, particularly Dr. Phillip Lee and Dr. Arthur Lawrence (Asst Secretary of Health) for their determination to see this teleconference produced. We would also like to thank the three PWC volunteer "consultants" - John Freidlich, Kim Kenney, and Orvaline Prewitt - and all off the conference faculty for their contributions and hard work. Hopefully, this teleconference is just the beginning of a serious effort to educate the medical community about this devastating illness.
If you are interested in viewing the teleconference, video tapes are available from the CFIDS Association of America ($10), the National CFIDS Foundation ($8), and the AACFS ($24.96). Printed transcripts are also available on-line at http://cais.net/cfs~news/satel1ite.htm.
QeLorenzo, Hargreaves, and Kakkar. Pathogenesis and management of delayed orthostatic hypotension in patients with chronic fatigue syndrome.Clin. Auton. Res., Aug 1997(4):185-90. In this study, 78 CFIDS patients and 38 healthy controls were given the upright tilt table test and 22 patients were diagnosed with orthostatic hypotension based on the test results. These 22 patients were given sodium chloride therapy for 8 weeks and retested. Eleven patients reported improvement in their overall health and their tilt-table tests were normal. Ten of the 22 patients, however, still had orthostatic hypotension and were found to have low plasma renin activity which the researchers stated could explain why the therapy was ineffective in these cases.
Regland, Andersson, Abrahamsson, Bagby, Dyrehag, et. al. Increased concentrations of homocysteine in the cerebrospinal fluid in patients with fibromyalgia and chronic fatigue syndrome.Scan J Rheumatology, 1997, 26(4):301-307. Twelve patients diagnosed with CFIDS and FMS were found to have abnormally high levels of homocysteine in their CSF. The elevation in HCY correlated with the severity of the patients' illness. Patients were also found to have low vitamin B-12 levels in their
Vollmer-Conna, Hickie, Hadzi-Pavlovic, et.al. Intravenous immunoglobulin is ineffective in the treatment of patients with chronic fatigue syndrome. Am J Med, July 1997, 103(1):38-43. In a double-blind, randomized and placebo-controlled study, 99 CFS patients were treated for three months with either placebo or one of three different dosages of IV immunoglobulin. None of the three dosages caused improvement in the patients' overall health, but 70-80% reported side-effects from the treatment
Enestrom, Bengtsson and Frodin. Dermal IgG deposits and increase of mast cells in patients
with fibrornyalgia -- relevant findings or epiphenomena?Scand J Rheum, 1997,
26(4):308-313. Skin biopsies from 25 patients with FM, 5 healthy controls, 8 patients with RA, and 9 patients with local chronic pain after whiplash injury were examined for the occurrence of IgG deposits and collagen types using direct and indirect immunofluorescence, and for dermal connective tissue mast cells using semithin Epon sections. FM skin biopsies had significantly higher values of IgG deposits in the dermis and vessel walls showed a higher reactivity for collagen III. They also had a higher mean number of mast cells. There was a correlation between the percentage of damaged/degranulated mast cells and the individual IgG immunofluorescence scores. These findings support the hypothesis of neurogenic inflammation involvement in fibromyalgia.
Anderson and Ferrans. The quality of life of persons with chronic fatigue syndrome.J Nervous and Mental Disease, 1997, 185(6):359-367. This study analyzed the multiple dimensions of quality of life in persons with CFIDS. By using both quantitative and qualitative methods in the study, the authors were able to obtain more comprehensive data. A sample of PWC's completed the quality of life index and CFS questionnaire and a subset of 22 were interviewed regarding their lived experience with CFIDS. Overall scores on the quality of life index were significantly lower in CFIDS than for other chronic illness groups. Subjects reported the lowest quality of life scores in the health and functioning domain. The findings suggest that quality of life is particularly and uniquely disrupted in CFIDS.
An educational article about CFIDS has been published in the Journal of the American Medical Association. The article is authored by Anthony Komaroff of Harvard Medical School. While the text of the article contains little that is new for those who are already familiar with the illness, it is important that this article has been published in one of the most widely read and respected medical journals in the U.S. The literature citation is: "A 55-Year old woman with Chronic Fatigue Syndrome. Anthony L. Komaroff. JAMA, 278 (14):1179-8S. This article may be very useful for physicians who are not familiar with diagnosing or treating CFIDS. It summarizes the known research, differentiates CFIDS from depressive illness, and discusses management.
SOURCE: CFS-News, December 3, 1997
AUSTRALIAN CFIDS/ME CONFERENCE SET FOR
FEBRUARY 12-13, 1998 IN SYDNEY
The University of Newcastle is sponsoring a CFIDS/ME Research conference titled: The Clinical and
Scientific Basis of Chronic Fatigue Syndrome: From Myth Towards Management. This conference is
scheduled to take place at the Manly Parkroyal in Sydney, Australia, on February 12-13, 1998. International key-note speakers include:
Peter Rowe (Johns Hopkins): CFS, Blood Pressure Abnormalities and Gastrointestinal Symptoms: Potential Treatment Approaches.
Garth Nicholson (University of Texas)Role of Chronic Infections in CFS, FMS, and GWS - Antibiotic Regimes.
David Bell (Harvard University/private practice): Clinical Manifestations of Severe CFS - A Case History - Presentation.
Australian speakers include:
Hugh Dunstan (U of Newcastle): Biochemical Changes and CFS.
Andrew Lloyd (U of New South Wales): Overview of Prince Henry Hospital Research in CFS.
Neil McGregor (U of Sydney): Clinical Applications of Metabolic Profiling in CFS.
Timothy Roberts (U of Newcastle): Overview of Newcastle Research in CFS.
Denis Wakefield (U of NSW): Clinical Research and Findings in CFS
CDC's WEBSITE LISTS TESTS RECOMMENDED TO SCREEN FOR
EXCLUSIONARY CONDITIONS WHEN DIAGNOSING CFIDS
The CDC website at
http://www.cdc.90v/ncidod/diseases/cfs/defined5.htm has provided a listing of recommended testing which should be done when a physician is considering a diagnosis of CFIDS in a patient presenting with
severe fatigue. These include: CBC, SED rate, total protein, albumin, alanine aminotransferase, globulin, alkaline phosphatase, calcium, blood urea nitrogen (BUN), phosphorus, glucose, electrolytes, creatinine, TSH, and a urinalysis. The CDC states that "patients with unusual findings in the above set of tests probably have an underlying disorder other than CFS that the physician may successfully diagnose with further testing. ... However, more than 90% of patients presenting with severe fatigue will test at normal levels for the series of tests listed above." The CDC site also lists tests that are still considered experimental in diagnosing CFIDS including serological testing for EBV, enteroviruses, retroviruses, and HHV-6; testing for candida albicans; immunological testing for NK cells and cytokine assays; and imaging testing such as MRI, SPECT, and BEAM scans.
CFIDS MAY RECEIVE ITS OWN ICD-9 CODE
The National Center For Health Statistics (NCHS) is considering creating an ICD-9 code for CFIDS. The new code, 780.71, was discussed at an internal NCHS working meeting held December 5, 1997. The CDC's William Reeves stated at a meeting of the VA Persian Gulf Expert Scientific Committee meeting on November 18, 1997 the new ICD-9 code is in the same category of "symptoms, signs and ill-defined conditions" such as "malaise and fatigue" but will be specifically for CFS as defined by the 1994 case definition. He added that this is a U.S. decision and will not affect the ICD-10 already in use
GULF WAR SYNDROME AGAIN LINKED TO CFIDS
At a November 15 meeting of the U.S. Department of Veterans Affairs Gulf War Scientific Advisory
Committee, CDC's William Reeves presented data which links CFS with Gulf War Syndrome (GWS). "CFS illustrates an ill-defined condition which is virtually identical to the sort of illness that several research groups have identified as affecting large numbers of Persian Gulf War veterans, he said. Data supporting this statement from the CDC's study of a Pennsylvania Guard Unit has been presented at several scientific meetings and reported in the CFIDS Chronicle. Peeves, one of the authors of the current CFIDS case definition, recommended that the committee develop "a working clinical case definition, that may include CFS, for chronically ill Persian Gulf veterans with multi-symptom disease that cannot be otherwise explained." He added that it may be time to develop a third international consensus revision of the CFS case definition. Dr. Reeves suggested that CFS and GWS research programs be expanded and integrated by identifying and allocating additional resources. He suggested the combined research agenda might include other ill-defined conditions such as fibromyalgia and multiple chemical sensitivities.
SOURCE CFIDS Chronicle, Jan/Feb 1998
MPWC'S HONORED AT CAA ANNUAL MEETING
The CFIDS Association of America awarded Lori Clovis of MPWC's the CSN Champion Award at their October 25 annual meeting in Chicago. The award is presented to a person who has "shown outstanding support of persons with CFIDS." Clovis was honored in the PWC Volunteer category. MPWC's Gail Dahlen, Meghan Shannon, and Frankie Billingslea were also nominated for this award. Congratulations to Lori, Gail, Meghan, and Frankie for all of their hard work on behalf of all MPWC's.
A December 2, 1997, issue of BioWorld has reported on research linking Human Herpes Virus-6 with multiple sclerosis. New evidence from researchers at the National Institute for Neurological Disorders and Stroke in Bethesda, MD, has linked HHV-6 with MS after repeated attempts to link other herpes viruses such as EBV and CMV have failed. The article states: "In 1995, HHV-6 was shown to inhabit the plaques of multiple sclerosis lesions -- regions of nerves that have lost the protective myelin sheath that ordinarily surrounds them." Now, Steven Jacobson, chief of the viral immunology section of NINDS, have screened the serum of 102 volunteers (36 of whom had MS) and reported their results in the journal Nature Medicine: "of the 22 individuals with the relapsing-remitting form of the disease, 73% had an increased immune response to an early antigen of HHV-6 compared with 18% of the normal volunteers." Johnson noted that the fact that MS is relatively rare but HHV-6 is fairly widespread is not paradoxical: "For such a ubiquitous virus to be associated with a disease we would have to envision a situation where a person has a genetic susceptibility for the disease. That sort of rules out finding the virus that causes MS. It is a complex interplay between genes and the environment rather than a genetic or a viral cause of the disease." This has obvious applications for the study of other illnesses such as CFIDS and FMS.
WOMAN'S DAY DEALS WITH CFIDS AND FMS
In the September 16, 1997, issue of Woman's Day, the issues of CFIDS and FMS are discussed in an article entitled "What's Wrong With Me? When Even Doctors are Stumped, What You Can Do To Help." The article by Flora Davis profiles several patients and describes the ordeal each suffered in their search for a diagnosis. The author suggests a number of strategies which can be used when doctors are stumped including: keeping a medical journal, finding a case manager, doing your own research, finding people with similar symptoms, and seeking help from national organizations.
FIBROMYALGIA CONFERENCE A SUCCESS
The Fibromyalgia Conference sponsored by the Fibrcmyalgia Alliance of America and Anadem Publishing was held in Columbus, OH, August 5-10. More then 350 FM patients and advocates were in attendance to hear discussions on the latest research into this disorder. University of Alabama at Birmingham professor and psychologist Lawrence A. Bradley reported that his
research shows reduced blood circulation in the lower spinal cord in patients with FM which could eventually lead to a biological marker for FM using SPECT scans. University of Michigan rheumatologist Leslie J. Crofford reported on his studies into dysfunction in the HPA axis in FM. Attendees also heard from rheumatologists Daniel Clauw and Muhammad Yunus as well as clinician and PWFMS Mark Pelligrino.
SOURCE: CFIDS Chronicle, Fall 1997
THOUGHTS FROM ABROAD WITH RELEVANCE TO MPWC'S ANO OTHER U.S. CFIDS/FMS GROUPS
A letter to the ME Association from Kendra Dayger, BS, MS, author of Review of Mainstream CFIDS Research in the USA and The Ft.Lauderdale Notebook Series, has relevance for the many CFIDS and FMS support groups here in the United States. Ms. Dayger writes: "Many physicians and organizations are afraid of losing customers if they advocate 'traditional' rather than 'alternative' treatment, or both, and they are correct. However, patients are more than adequately served by the enormous mass marketing of the 'alternative' philosophy (a reportedly $30 billion dollar business in the USA alone). Patients are notoriously underserved by organizations equipped to provide medical information. It is confusing to the patient/physician/government who receives information about both substantiated and unsubstantiated remedies from the same source. Note that this is not anti-anything; it is pro-choice, and informed choice requires that the person be able to tell the difference. Two remedies, one derived from the 1800's and one derived from 1990's medical research, are often perceived to be comparable and require a simple choice between 'natural' and 'artificial,' but that is simply untrue. People need to be educated about the difference between these philosophies in order to make an informed decision about how they want to spend their health care funds. I hope that the ME Association will make an even stronger and more consistent effort to play the role of reliable medical authority. Not only is it needed, but I believe it is the only way to win medical validation in the 1990's society and beyond. I hope you see the uniqueness of this singular mission among the larger ME organizations in the world. Medical validation would incorporate this disease into the worldwide scientific system of physician training, insurance coverage, and public support, from whence cometh all major financial support." It's something to think seriously think about!
SOURCE: Perspectives, ME Association of Great Britain, September 1997.
A LESSON: WHAT REALLY MATTERS
A few years ago at the Seattle Special Olympics, nine contestants, all physically or mentally disabled, assembled at the starting line for the 100-yard dash. At the gun, they all started out, not exactly in a dash, but with a relish to run the race to the finish and win. All, that is, except one boy who stumbled on the asphalt, tumbled over a couple of times, and began to cry. The other eight heard the boy cry. They slowed down and looked back. They all turned around in unison and went back -- every one of them. One girl with Down's Syndrome bent down and kissed him and said, "This will make it better." All nine competitors linked arms and walked across the finish line together. Everyone in the stadium stood and the cheering went on for several minutes. People who were there are still telling the story. Why?? Because deep down we all know this one truth: What matters in this life is more than winning for ourselves. What truly matters in this life is helping others win, even if it means slowing down and changing our course.
SOME THOUGHTS ON SOMATIZATION DISORDER BY DAVID HALL, M.D. AND MPWC
The (APA's) DSM-IV contains the diagnostic criteria for somatization disorder. Most CFS and FMS patients do not qualify for these criteria but a few do. The symptoms of SD must be without medical explanation. Generally patients with CFS will have a positive quantitative EEG, neuropsychological test, or some other objective data..."
"Somatization Disorder (SD) can generally be easily distinguished from CFS and FMS by the experienced evaluator ... Generally patients with SD do not bring a list of symptoms. In fact the diagnosis is usually missed because the patients are more concerned with their social problems than with their symptoms. I have never seen a case of SD in which there was not a significant personality disorder. Generally, the personality disorder is more disabling than the physical symptoms ...
"If you are concerned that this issue may come up in a disability evaluation you should anticipate this and have your health professional address this issue in his report. He should make a statement that SD was considered and ruled out, giving his reasons...."
SOURCE: Dr. David Hall's website:
By the time CFIDS has taken over your life you will have had to go through many losses. Practitioners know that with each significant loss, we go through the stages that Elizabeth Kubler-Ross has taught and written about with death and dying: (1) denial and isolation, (2) anger, (3) bargaining, (4) depression, and (5) acceptance. (Is it any wonder that depending on the many losses we have incurred, PWC's are in several of these stages at any one time?)
Many new PWC's, and perhaps many long-time PWC's as well, may not be aware that CFIDS may slither its way into our lives in other ways, too. To our beloved pets. I remember reading about the little Maltese canine named Murphy in the classic CFIDS article in Newsweek, 12 Nov 1990. Apparently,
Murphy had acquired pet-CFIDS from his owner. When Murphy died, his blood was sent to Dr. Paul Cheney's lab; Murphy and his owner, it turned out, had the same immunological abnormalities.
I didn't want my little Maltese, Alexandra, to get sick, so I was careful not to feed her any of my food or
leftovers. She did have one bad habit, though. If and when I was able to get to the store, she would get in my waste basket and tear up all of the kleenex in it -- a protest for my leaving her home alone. It was the kleenex I had used.
Since the Newsweek article, I have heard and read articles on pets and their owners who had CFIDS. Even though the number of articles have been few, the number of CFIDS patients with strange pet illnesses have been many. Proper funding has always been the barrier in this disease to do any type of
studies, particularly when they involve pets.
Dr. Cheney did a short, informal study of his CFIDS patients and their pets in an article for The CFIDS Chronicle (Spring 1991) called "Domestic Animal Illness Associated with CFIDS." He reported that in 50% of his CFIDS patient who responded to his questionnaire, they had reported a severe or unusual illness, and even sudden death, among their pets. None of the controls reported any of these problems.
Dr. Richard T. Glass, DDS, PhD, has been trying to study CFIDS patients and their pets illnesses/deaths for several years now. Funding has been his major problem. (Dr. Glass's address is available upon request.)
Dr. W. John Martin wrote an article with Dr. Glass which appeared in Pathobiology (1995; 63(3):115-118) which reported that Simian CMV, isolated from a CFIDS patient and innoculated into cats, induced an "acute neurological illness. . . and acute encephalopathy." On autopsy, the cats
had the same virus as the patients.
In a recent outbreak which occurred in the Spring/Summer 1996 of a CFIDS-like/"stealth" virus epidemic in the Mohave Valley (USA), Dr. Martin and Dr. Donnovan Anderson reported that "viral cultures and epidemiological data support human-to-human and possible human-to-dog transmission of the virus"
(Pathobiology, 1997; 65(1):51-56).
All of this cold, hard data does not ease the pain when it is our beloved pet that is lost to a strange and/or sudden death . . . quite possibly from CFIDS. Our CFIDS - transferred somehow to them. Their loss creates a hole, Grand Canyon sized, in out hearts and lives. Add to this the very real
possibility that they contracted our disease from us and we have guilt along with the mourning. We "rack it up" along with the many other and continuous losses to CFIDS, but this one ranks near the very top of hurts, if not the very top.
On June 18, 1997, I suffered such a loss. My "best friend" Alexandra (aka Andie) experienced a sudden death (most likely a massive heart attack) after months of not appearing well. I had taken her to the vet with pet studies in hand only to be told that "you worry too much." It was like many of the doctors I had encountered with my own CFIDS. The only thing that settles my broken heart was that I was with her when she died, outside, in the late spring morning. I did CPR on her for almost an hour, believing that being a nurse and catching her at the moment of crisis, I would no doubt revive her and take her immediately to an ER vet. It didn't work out that way. My beautiful "California baby," Alexandra, whose name meant "helper to mankind," was forever gone. A part of me was gone forever, too. "No! No!
Not my Andie, too!" kept rolling out of my disbelieving heart in my shocked wailings.
Lori Clovis, our newsletter editor, lost her young 2 1/2 year old cat, Oliver Twist, to severe neurological
problems that ended in a sudden death (massive heart attack) also. She wrote me a sympathy card for the loss of my Andie, "there is nothing like the love and companionship of a beloved pet and I grieve with you." She is right.
The point I want to make is for you to be extremely careful with your pets. If a vet dismisses your concerns, go to another one (which is exactly what you should do if your own doctor dismisses your concerns as well). Be aware of possible CFIDS or unusual symptoms in a pet.
I received several cards and e-mails sympathizing with my loss of Andie. Gail and Bernie Kansky honored her with a donation to their Memorial Fund for the National CFIDS Foundation. I want to thank everyone who knew and sent their condolences. It meant a lot.
This article, and this entire issue of MPWC News, is dedicated to Alexandra, Oliver Twist, and Snoopy (my sister's pet poodle) and to ALL pets we love and who love us back no matter how sick we are, how much we cannot do for them, how much we have relied on their love and companionship, for being
our "best friends" and many times even our "nurses" -- and the great loss we bear when we face a life with CFIDS (or any illness) without them.
Robert Hennessy, who created the above cartoon, is the brother of well-known CFIDS activist and RESCIND President, Tom Hennessy. This cartoon has been around for quite some time, but I wanted to be sure everyone had seen it because it is so good.
Help Me, Doctor
by Sharon J. Squares, RN
Oh, Doctor, dear Doctor, I'm feeling so sick!
Are you sure you don't know of some magical trick?
I know I'm still breathing; and I don't think I'm dead ...
But I do think there's something seriously wrong with my head!
For no matter the subject; this occurs all the time;
Everything I think of, comes out in a rhyme!
Before I was ill, I was never a poet,
(Based on this verse, I'm sure that I show it!)
I don't think it's mono, or a germ from Korea,
My God! I think it's "dysrhymorrhea"!
My face is all pasty, my limbs feel like lead,
My skin hangs like draperies from the weight that I've shed,
I'm feverish, I'm dizzy, my glands grow and grow,
And now I'm hallucinating; I think I'm Thoreau!
Poetry escapes form me, much like the "runs"
(Say, perhaps there's no difference 'tween my head and my buns!)
But isn't there a chemical, a chant, or some "schtick"?
'Cause this malady of mine makes everyone sick!
Sharon Squires is an MPWC from Pacific Palisades, California. She has been a Registered Nurse in California since 1980, primarily in the E.R. Sharon developed severe post-viral symptoms in 1987 and has been unable to work since 1995.
Chronic Fatigue Syndrome: A Treatment Guide by Erica Verrillo and Lauren Gellman has been published by Quality Medical Publishing of St. Louis, MO. This concise and easy to understand reference offers the latest medical knowledge, sound advice, and hope to persons with CFIDS. Both authors are long-term CFIDS survivors and their book combines a self-help manual, the personal histories of several CFIDS survivors, and a treatment dictionary. It deals with diagnosis, symptoms, traditional and alternative therapies, and coping strategies from the patient's perspective. Available in January 1998 at a cost of $23, this book is available from:
Quality Medical Publishing, Inc.
11970 Borman Drive, Suite 222
St. Louis, MO 63146
PHONE: (800) 348-7808
FAX: (314) 878-9937
FIRST INTERNATIONAL FM CONFERENCE SET FOR MAY 23-25, 1998, IN THE BIG APPLE
The first ever International Fibromyalgia Conference is scheduled to take place in New York City on
May 23-25, 1998. Speakers include: Robert Bennett, MD; Muhammad Yunus, MD; Don Goldenberg, MD; Jacob Teitelbaum, MD; Sharon Clark, PhD; Mark Pelligrino, MD; Lars Tanum, MD (Norway); Miryam Williamson, MA; Darice Putterman, PT; Paddy Kennedy (Vancouver); Richard Bachrach, DO; Sharon Green (Manager Pain Clinic, Vancouver); and David Squires. For a brochure, send your name and address to
Fibrobetsy@aol.com and indicate whether you would be interested in tickets to David Letterman or other TV shows which have to be ordered 6-8 months in
advance. If you are not on-line, send this information to Lori Clovis, P0 Box 144, Hinsdale, NY 14743 and she will forward it to Fibrobetsy via e-mail. Special rates have been set up for conference attendees at the New York Hilton.
CFIDS/FIBROMYALGIA SEMINAR IN FLORIDA
The Manasota CFIDS Support Group is sponsoring a CFIDS/Fibromyalgia seminar entitled, "Everything You Always Wanted to Know About CFIDS/Fibrmyalgia," to be held on February 14, 1998, at Doctors Hospital Professional Center, Bee Ridge Road and I-75 (Exit 38) in Sarasota, Florida. Registration,
Florida Registration, including lunch, is $20 through February 1 and $25 after February 1. Seating space is limited, so early registration is advised. Featured speakers are Devin Starlanyl, MD, author of Fibromyalgia and Chronic Myofascial Pain; Phillip Nelson, MD, a local CFIDS specialist; and Nina Insinna, BS, ATM, a humorist. Lodging is available at spcial rates at the Hampton Inn, I-75 and Bee Ridge (941-371-1900 for reservations). For more information, contact Iris duBois, Seminar Chairman, at (941) 966-1252 (afternoons and evenings until 11:00) or email
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MPWC News is published quarterly by the Medical Professionals/Persons with CFIDS Support Group, P.O. Box 144, Hinsdale, NY 14743-0144. We reserve the right to waive the subscription fee upon request. Thank you for your support.
MPWC News is the newsletter of the Medical Professionals/Persons with CFIDS Support Group. All articles in this newsletter are for informational purposes only. Patients should consult with their physician for treatment. Permission is granted to either excerpt or reprint this document if the source is cited. This does not diminish the rights of others whose copyrighted material (as noted) may be quoted herein.