Home Page || About Co-Cure || Articles and Posts || Reading Room (Main) || Additional Resources || Let's Work Together || List Operation


CFS Reading Room Topics
Central Agencies
Disability Issues
Meetings /Conferences

Reports


Research


Miscellaneous

Clinical
Scientific
Reviews
Treatments

Clinical Research

Neurocognitive Impairments in CFS By John DeLuca, PhD
 UMDNJ-New Jersey Medical School

“Studies assessing structural and functional neuroimaging, autonomic activity and neuroendocrine abnormalities all point to neuropathology in chronic fatigue syndrome (CFS) patients. While the nature and the extent of neuropathologic involvement in CFS is still unclear, neurocognitive studies make up a very large body of CFS research.

“This is an important area for clinicians to familiarize themselves with, as cognitive problems have been cited as one of the most disruptive and functionally disabling symptoms of CFS, with up to 85% of patients reporting impairments in attention, concentration and memory abilities.

“This article provides an overview of neurocognitive findings in CFS patients and the possible underlying structural changes in the brain.“

Childbearing and CFIDS: Making a Difficult Decision by Dr. Charles Lapp

“Deciding to have children is a central event in many individuals’ lives. Having chronic fatigue and immune dysfunction syndrome (CFIDS) makes the decision more difficult. Pregnancy and parenthood for individuals with CFIDS can seem daunting, and it is hard to find good information on the risks. Unfortunately, there is very little formal research on pregnancy and CFIDS, so most of what is known is medical opinion rather than documented fact.

“This article aims to provide some general advice, but women who have CFIDS and are thinking about becoming pregnant need to talk through the issues carefully with their partners and with their physicians. Countless couples with CFIDS have successfully borne and reared children. Careful advance planning can help make the experience easier and more enjoyable.“

“No Other Illness Like This One“: Dr. Bell Finds Dramatic Abnormalities in CFIDS “Dr. Bell has completed further research on some specific physical ramifications of low circulating blood volume. He and Streeten conducted tests on Bell's patients by tracking their blood pressure and pulse while lying and then standing. Consistent with Bell's long-held assumptions, virtually all of his patients (18 or 19 of 20) exhibited aberrations when upright. This is hard data that could be helpful in diagnosis and ultimately treatment, that generally correlates with disease severity, and that could prove very valuable in fighting for disability benefits.“

Understanding the Different Phases of CFS by Patricial A. Fennell, CSW
“Chronic Fatigue Syndrome can affect virtually every major system in the body, as neurological, immunological, hormonal, gastrointestinal and musculoskeletal problems have been reported. An estimated 25% of patients with CFS are confined to their homes, while others continue to work at least part time but drastically curtail their social activities. [1]

Given the wide array of symptoms, it is difficult for health care practitioners to fully understand what patients go through on a daily basis. We need to consider social, emotional and family effects as well as the physical symptoms.

Individuals coping with CFS progress through four qualitatively distinct phases [2] as they learn to better deal with their illness. In fact, how they respond to treatment may be different depending on the phase they are in.

Following is an explanation of the The Four Phase Model of chronic illness using a real patient case.“

Bringing Research to the Clinical Setting by Gloria Furst,OTR/L MPH, National Institutes of Health; Nancy Klimas, MD, University of Miami; and Paul Levine, MD, George Washington University “Although there is a large body of scientific research on chronic fatigue syndrome (CFS), these findings are rarely accessible to the practicing clinician. To address this problem, a think tank was held March 16-18 in Reno, Nev., near Incline Village, where the well-publicized 1984-85 outbreak of CFS occurred.

Eighteen CFS researchers and clinicians participated on two panels to examine rehabilitation strategies and basic science findings and make recommendations about what and how knowledge about CFS could be applied by clinicians to help patients.“

The Physical Basis of CFS by Anthony L. Komaroff, M.D.
“Often, when people hear that there is no known test or cause for chronic fatigue syndrome (CFS), they mistakenly understand that to mean that the illness is not real. This is incorrect.

Over the past 15 years, scientists have identified numerous biological abnormalities that provide evidence for the reality and seriousness of CFS, even though the cause of CFS and diagnostic tests for it are still unknown. (1) These biological abnormalities have given researchers clues to the cause of the illness. In particular, they have provided evidence that the illness involves both the brain and the immune system.“

Dr. David Berg on CFS Radio
In this transcript of the August 29th, 1999 show, Dr. David Berg, director of HEMEX Laboratories, discusses his recent findings on the hypercoagulable state that he has found in CFS patients and his success in treating this condition with heparin.

Paul Cheney on CFS Radio
In this transcript of the February 28, 1999 CFS Radio show, Dr. Paul Cheney discusses such things as CFS and it's similarity to Reye's Syndrome, the findings of the activated RNase L antiviral pathway and it's effects on CFS patients, his experience using Ampligen and the finding of a defect in the detoxification pathway of CFS patients, in particular the glutathione system and the promising results he's had in his study using Immunocal.

The First Issue of the Lyndonville News
A new CFS newsletter by David S. Bell, MD FAAP, Jean Pollard, AS, and Mary Robinson, MS Ed.

Welcome to the first issue of our new newsletter, Lyndonville News. In this newsletter we hope to reach out to the many families dealing with CFS in the world today. Dr. David S. Bell has been working with patients with CFS since 1985 when a cluster appeared in the small town of Lyndonville, NY, where he had a small family practice. He has devoted his life to finding the cause and the cure to this insidious illness, as well as making life more bearable for those who live with it. I am Mary Robinson, and I look forward to joining Dr. Bell and Jean Pollard in this newest endeavor.

Dr. Byron Hyde Speaks on CFS Radio

Dr. Byron Hyde is chairman of the Nightingale Research Foundation in Canada, and was interviewed on the Roger Mazlen Radio Show on 1-31-99.

He discusses a number of issues concerning his work, including a polio-like virus that he is seeing in some of his sudden-onset CFS patients as well as the results of SPECT scans of sudden-onset CFS patients which show that their brains are not getting proper blood flow or nutrition.

Dr. Hyde also talks about vascular disease being seen in many CFS patients and the fact that his work is confirming the Streeten-Bell research that shows that CFS patients have 20 to 50% less blood volume than do healthy people.

Overlap of CFS and AIDS Treatment and Research

The guest on this week's CFS Radio Show was David Miller, an advocate in AIDS research and treatment. He spoke of some very interesting aspects of AIDS and CFS research and in particular of some of the treatments being used on CFS patients soon to be also used on AIDS patients and describes some very interesting details of this treatment and why it works against retroviruses which sheds some light on why it is working against CFS and why it may work on AIDS patients.

Information for Doctors on Diagnosing Chronic Fatigue Syndrome

Net Links to information from Dr. Lapp and Dr. Cheney, among others.

The Treatment of Chronic Fatigue Syndrome (CFS)

The Treatment of Chronic Fatigue Syndrome (CFS): The Perspective of a Private Specialty Practice in Charlotte, NC. [This is a transcript of a lecture given by Dr. Charles W. Lapp in Nashville, TN in April 1997.]

Dr. John Martin's March 9, 1997 Lecture on Stealth Virus Encephalopathy. Transcript prepared by Carolyn Viviani. Dr. Martin discusses his efforts to research the apparent CFIDS outbreak in Mohave Valley, Arizona in early 1996 and the role that stealth viruses may have played in this outbreak.

Top of Page


Scientific Research

RNase L Fragmentation and Blood Chemistry In CFS and Depression - A Landmark Paper?

A Laymen's Guide To RNase L in CFS
By Cort Johnson

Suhadolnik, R. A., Peterson, D., Reichenbach, N., Roen, G., Metzger, M., McCahan, J., O’Brien, K., Welsch, S., Gabriel, J., Gaughan, J. and N. McGregor. 2004. Clinical and biochemical characteristics differentiating chronic fatigue syndrome from major depression and healthy control populations: relation to dysfunction of the RNase L pathway. Journal of Chronic Fatigue Syndrome 12: 5-35.

"It is not often that a paper is described as a ‘landmark’ upon publication but that is how the editors of the Journal of Chronic Fatigue Syndrome, Kenny De Meirleir and Neil McGregor, described this latest offering from Robert Suhadolnik and his colleagues. Even the authors of the paper abandoned some of their normal caution and described it as ‘pivotal’. As this is the first part of a two part paper the full findings are not yet available."

Report of the DHHS Chronic Fatigue Syndrome Coordinating Committee State of the Science Conference, October 2000

Chronic Fatigue Syndrome: Evidence Supporting the Hypothesis of a Behaviorally-Activated Neuromodulator of Fatigue

"In the investigation of the pathophysiological processes leading to the development of CFS, the literature has identified a constellation of findings of heightened fatigue, altered or attenuated autonomic and HPA axis function, impaired cardiovascular regulatory response to orthostatic challenge, an altered immune profile, and increased responsivity of soluble mediators during physical and mental-behavioral activation. These findings suggest that the pathogenesis of CFS includes an alteration of CNS mechanisms of autonomic control of the cardiovascular, neuroendocrine, and immune systems. Future research toward the understanding of CFS pathogenesis is needed to: 1. establish the autonomic/HPA dysfunction at rest; 2. identify the integrity of autonomic, neuroendocrine and immune function in response to challenge; and 3. examine the possibility that the responsiveness of one or more of the soluble mediators may be related to increased perception of fatigue during rest and during dynamic challenge. We postulate that as a consequence of behavioral activation some centrally acting neuromodulator may be altering the awareness of fatigue and that, in response, the CNS initiates a counter-regulatory mechanism to reduce that activity of those systems responsible for the production of the neuromodulator. In turn, perpetuation of this counter-regulatory response results in the prevailing dysregulation of the autonomic and HPA axes leading to impaired cardiovascular function. The relative paucity of research in this area suggests that an improved understanding of the autonomic, cardiovascular, neuroendocrine and immune mechanisms underlying the response to behavioral challenge in CFS patients may contribute to a more refined understanding of the pathological process and, therefore, perhaps to improved treatment approaches."

Current and Recently Completed Federally Funded Research Projects on CFS

Prevalence of Fatigue and Chronic Fatigue Syndrome-Like Illness in Children and Adolescents

Karen M. Jordan, PhD; Penny M. Ayers, BA; Susan C. Jahn, BA; Kari K. Taylor, BA; Cheng-Fang Huang, MA; Judith Richman, PhD; Leonard A. Jason, PhD

ABSTRACT.
A community-based screening of over 12,000 households was conducted in order to determine the prevalence of fatigue and CFS-like illness in a sample of 5- to 17-year olds. Results indicate that over 4% of the sample was fatigued and that 2.05% were diagnosed with CFS-like illness. Adolescents had a slightly higher rate of CFS-like illness (2.91%) than did pre-pubescent children (1.96%). Those with CFS-like illness were almost evenly divided between male (47.5%) and female (52.5%). Youngsters of Latino origin had the highest representation in the CFS-like group. Symptom data, family patterns, and other data are presented for both the CFS-like group and the entire sample.

A Community-Based Study of Chronic Fatigue Syndrome

Arch Intern Med. 1999;159:2129-2137
Leonard A. Jason, PhD; Judith A. Richman, PhD; Alfred W. Rademaker, PhD; Karen M. Jordan, PhD; Audrius V. Plioplys, MD; Renee R. Taylor, PhD; William McCready, PhD; Cheng-Fang Huang, MS; Sigita Plioplys, MD

"Conclusions: Chronic fatigue syndrome is a common chronic health condition, especially for women, occurring across ethnic groups. Earlier findings suggesting that CFS is a syndrome primarily affecting white, middle-class patients were not supported by our findings."

"Data from this study indicate that CFS is a more common chronic condition, overall affecting 422 per 100,000 in the population, or about 836,000 people in the United States (based on the current US population count of 198,107,000 adults aged 18 years and older.42) It is possible that CFS rates may be higher than this estimate, given that some individuals with CFS may have escaped detection because of being too ill to undergo the evaluation process. Previous estimates using the current Centers for Disease Control and Prevention criteria1 have ranged widely, from 75 to 2600 per 100,000, suggesting significant methodological and sampling discrepancies between studies."

Cytokine Expression and Morphology of in vitro Grown Monocytes in CFS

R. B. Gimenez, PhD, P. Cash, PhD, R. B. 5. Laing, MD, MRCP, J. G. Douglas, BSc (Hons) FRCPE. J of CFS V5N1 1999.

American Journal of Medicine: Symposium on Chronic Fatigue Syndrome

Chronic fatigue syndrome is the focus of a special supplement of the American Journal of Medicine, published in September 1998. The supplement contains some 20 scientific articles.

Circulating Blood Volume in Chronic Fatigue Syndrome

Circulating Blood Volume in Chronic Fatigue Syndrome
(Journal of Chronic Fatigue Syndrome, Vol. 4(1) 1998)
David H. P. Streeten, MB, DPhil, FRCP, FACP David S. Be11, MD, FAAP

ABSTRACT. Chronic fatigue syndrome (CFS) is an illness associated with severe activity limitation and a characteristic pattern of symptoms despite a relatively normal physical examination and routine laboratory evaluation. The recent description of delayed orthostatic hypotension in patients with CFS, and previous findings of reduced red blood cell (RBC) mass in other patients with orthostatic hypotension not known to have CFS, led us to measure RBC mass and plasma volume in 19 individuals (15 female, four male) with well characterized, severe CFS. RBC mass was found to be significantly reduced (p < 0.001) below the published normal range in the 16 women, being subnormal in 15 (93.8%) of them as well as in two of the four men. Plasma volume was subnormal in 10 (52.6%) patients and total blood volume was below normal in 12 (63.2%). The high prevalence and frequent severity of the low RBC mass suggest that this abnormality might contribute to the symptoms of CFS by reducing the oxygen-carrying power of the blood reaching the brain in many of these patients.

Immunological and Haematological Parameters in Patients with CFS. Timothy K. Roberts, PhD, Neil R. McGregor, MDSc, R. Hugh Dunstan, DPhil, Mark Donohoe, MB, BS, Raymond N. Murdoch, PhD, D. Hope, BSc, DipEd, S. Zhang, BMed, Henry L. Butt, PhD, Jennifer A. Watkins, BSc (Hons.), Warren G. Taylor, BSc. J of CFS V4N4 1998.

Relationship Between SPECT Scans and Buspirone Tests in Patients with ME / CFS. John Richardson, MB, BS, Durval Campos Costa, MD, MSc, PhD, J of CFS V4N3 1998

CD4 T lymphocytes from patients with chronic fatigue syndrome have decreased interferon-gamma production and increased sensitivity to dexamethasone.Visser J; Blauw B; Hinloopen B; Brommer E; de Kloet ER; Kluft C; Nagelkerken L; J Infect Dis 1998 Feb;177(2):451-4

"A disturbed hypothalamus-pituitary-adrenal gland axis and alterations at the immune system level have been observed in patients with chronic fatigue syndrome (CFS)."

Elevated apoptotic cell population in patients with chronic fatigue Vodjani A; Ghoneum M; Choppa PC; Magtoto L; Lapp CW; Immunosciences Laboratory Inc., Beverly Hills, California, USA.; J Intern Med 1997 Dec;242(6):465-78

"A prominent feature of chronic fatigue syndrome (CFS) is a disordered immune system. Recent evidence indicates that induction of apoptosis might be mediated in a dysregulated immune system by the upregulation of growth inhibitory cytokines. Therefore, the purpose of this study was to evaluate the apoptotic cell population, interferon-alpha (IFN-alpha) and the IFN-induced protein kinase RNA (PKR) gene transcripts in peripheral blood lymphocytes (PBL) of CFS individuals, as compared to healthy controls."

High prevalence without reactivation of herpes virus 6 in subjects with chronic fatigue syndrome Cuende JI; Civeira P; Diez N; Prieto J.; Laboratorio de Biologia Molecular, Hospital Provincial San Telmo, Palencia.; An Med Interna 1997 Sep;14(9):441-4

"Chronic fatigue syndrome (CFS) is a disorder of unknown etiology. Some viruses have been associated with CFS etiology, specially herpesviruses, enteroviruses and retroviruses. Some studies suggest an association between human herpesvirus-6 (HHV-6) and CFS. In order to know if there is an active HHV-6 infection in CFS patients we studied the immunologic and virologic status of HHV-6."

Comparison of heart rate variability in patients with chronic fatigue syndrome and controls. Yataco A, Talo H, Rowe P, Kass DA, Berger RD, Calkins H

"Recent studies have reported a close association between chronic fatigue syndrome and neurally mediated hypotension. We hypothesized that this association may result from an abnormality in autonomic function among patients with chronic fatigue syndrome, which may be detectable using an analysis of heart rate variability."
Sudden vs gradual onset of chronic fatigue syndrome differentiates individuals on cognitive and psychiatric measures.
DeLuca J, Johnson SK, Ellis SP, Natelson BH UMDNJ-New Jersey Medical School, Newark, USA.
"Because of the significant heterogeneity of the CFS population, the need for subgroup analysis is discussed."
Precipitating factors for the chronic fatigue syndrome.
Salit IE Division of Infectious Diseases, Toronto Hospital, Ontario, Canada; J Psychiatr Res 1997 Jan;31(1):59-65
"The onset of CFS may be associated with preceding stressful events and multiple other precipitants. An infectious illness is not uniformly present at the onset and no single infectious agent has been found; CFS is most likely multifactorial in origin."
Cognitive functioning is impaired in patients with chronic fatigue syndrome devoid of psychiatric disease.
DeLuca J, Johnson SK, Ellis SP, Natelson BH, University of Medicine and Dentistry of New Jersey, New Jersey Medical School, Newark, USA; J Neurol Neurosurg Psychiatry 1997 Feb;62(2):151-155
"Impaired cognition in chronic fatigue syndrome cannot be explained solely by the presence of a psychiatric condition."

"Fibromyalgia: The Muscle Pain Epidemic - Is it ME by Another Name?" Leon Chaitow N.D., D.O., MRO, Senior Lecturer, University of Westminster.

"In marked contrast to the time it has taken for research into ME and CFS to emerge there has over the past few years been an explosion in the medical literature featuring Fibromyalgia Syndrome (FMS)."

"The more the condition has been researched (FMS that is) the more obvious it has become that there is a vast overlap between it and ME/CFS."

"Both CFS(ME) and FMS often seem to begin after an infection or a severe trauma (physical or emotional) , and as indicated above the symptoms are very similar. The only obvious difference seems to be that for some people the fatigue element is the most dominant while for others the muscular pain symptoms are greatest (and for an unfortunate few both are markedly present)."

CFS Bibliographic Database, The American Association for Chronic Fatigue Syndrome.

A bibliographic database of over 1900 recent as well as historic references predominantly from the mainstream medical/scientific literature dealing with Chronic Fatigue Syndrome, Myalgic Encephalopathy, Fibromyalgia, and Neurasthenia as well as some peripherally related topics.

"Scientific Rationale for Behavioral Medicine in CFS" William Collinge Phd MPH.

"Recent years have seen a growing body of research documenting the benefits of behavioral medicine in chronic illnesses."

"The repertoire of behavioral medicine includes behavioral or psychological strategies which directly influence physiological states. The methods are applied in structured group programs, in individual therapy, and in daily practice at home."

"Until a medical cure is discovered, there is a great deal PWC's can do to help themselves manage symptoms, improve their quality of life, and promote their well-being. Kept in proper perspective, behavioral medicine can make a significant contribution to a comprehensive approach."

Chronic Fatigue, Fibromyalgia, and Autoimmune Thyroid Disease. The Mining Company.
Also see Immune Disorder Articles for other Thyroid Disease articles.

"While HAIT is known to be an autoimmune illness, researchers are beginning to believe that there is a strong autoimmune component to CFS and FMS as well. Ultimately, the three diseases may, in fact, be found to be varying manifestations of the same underlying autoimmune problems."

Top of Page


Research Reviews

What is Brainfog and how significant is it? Marilyn J. Kerr, RN
"One of the first things that makes us realize that there is something wrong with us is the inability to perform intellectually like we once did. We seemingly accept the increasing pain, the muscles spasms, the insomnia, but when we keep forgetting our own phone number, red flags go up."

"So we joke about it with each other - further dismissing its importance.

But something is wrong. It's been proven by SPECT and PET scans of the brain. It really IS all in our heads - and it's real."

Top of Page


Treatments

"Treatment of CFS with Specific Amino Acids". Reprinted from: Journal of Applied Nutrition, 46(3):74-78(1994); J. Alexander Bralley, PhD and Richard S. Lord, PhD, MetaMetrix Medical Research Laboratory.

"In an open trial, fasting plasma amino acid levels were measured in 25 CFS subjects. Amino acid mixtures were formulated based upon individual test results. Twenty subjects completed the study by taking 15 grams of the formulation daily for three months. Near complete symptom resolution was seen in 75% of subjects, 15% had moderate and 10% had little or no relief. Follow-up testing showed improved amino acid levels. Specific amino acids may affect metabolic processes increasing energy production in CFS patients."

"Cognitive behaviour therapy for the chronic fatigue syndrome: a randomized controlled trial." BMJ 312:22-26 (1996); Sharpe M, Hawton K, Simkin S, Surawy C, Hackmann A, Klimes I, Peto T, Warrell D, Seagroatt V; University Department of Psychiatry, Warneford Hospital, Oxford.

" CONCLUSION--Adding cognitive behaviour therapy to the medical care of patients with the chronic fatigue syndrome is acceptable to patients and leads to a sustained reduction in functional impairment. "

" A double-blind, placebo-controlled trial of intravenous immunoglobulin therapy in patients with chronic fatigue syndrome." Am J Med 89: 561-568 (1990); Lloyd A, Hickie I, Wakefield D, Boughton C, Dwyer J; Department of Infectious Diseases, Prince Henry Hospital, Sydney, Australia.

"CONCLUSION: Immunomodulatory treatment with immunoglobulin is effective in a significant number of patients with CFS, a finding that supports the concept that an immunologic disturbance may be important in the pathogenesis of this disorder."

Top of Page


Contact Co-Cure support personnel through our general on-line form or by sending an email message to co-cure-mod@listserv.nodak.edu.


Go to

Home Page || About Co-Cure || Articles and Posts || Reading Room || Additional Resources || Let's Work Together|| Co-Cure-HMC || Guestbook || Issue Boards || List Operation

Copyright© 1999-2005 Co-Cure
Last Revision: June 13, 2005
Please report any problems with this page to the Webmaster