Fatigue in OI subgroup improves with modafinil

Posted on 08/25/2014 by wames

Abstract

Many patients who suffer from orthostatic intolerance (OI) may also have severe fatigue and extreme exercise intolerance. In some of these patients, fatigue may be so severe that they are unable to maintain employment. In some, even the activities of the daily living may be compromised.

We report on the use of modafinil in a subgroup of patients who failed therapy with commonly used medication for fatigue in patients with OI. The study was approved by the institutional review board. A retrospective nonrandomized analysis was preformed on 60 patients evaluated at our autonomic center for OI from 2003 to 2010. The diagnosis of OI was based on patient history, physical examination, and reponse to head up tilt table testing. All these patients had fatigue as their predominant symptom.

Multiple trials of stimulants including methylphenidate, amphetamine, or dextroamphetamine failed to provide symptomatic relief of fatigue in these patients. Each patient received modafinil (100-200 mg daily). The mean follow-up period was 9 ± 3 months. A treatment was considered successful if it provided symptomatic relief from fatigue for the patient. Sixty patients, age 29 ± 15, 52 women were included in the analysis. Migraine (57%) and joint hypermobility syndrome (33%) were common comorbidities.

Out of 60 patients, 40 patients reported initial improvement with initiation of modafinil therapy. Twenty patients reported no change in their symptoms of fatigue. Of the 40 patients who showed initial improvement in their symptoms 4 had eventual recurrence of fatigue after 3 months of modafinil therapy. Thirty-six patients continued to demonstrate symptom relief from fatigue for more than 6 months. In a selective group of patients of OI, modafinil may improve fatigue.

Preliminary observations suggesting that treatment with modafinil improves fatigue in patients with orthostatic intolerance  by K Kanjwal et al in Am J Ther. 2011 Nov;18(6):449-52.

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MRI finds heart dysfunction in CFS

Posted on 08/25/2014 by wames

Abstract

Purpose: In chronic fatigue syndrome (CFS), only a few imaging and histopathological studies previously assessed either cardiac dimensions/function or myocardial tissue, suggesting smaller left ventricular (LV) dimensions, LV wall motion abnormalities (WMA), and occasionally viral persistence that may lead to cardiomyopathy. The present CMR study is the first to use a combined approach to assess cardiac involvement in CFS patients.

Methods: In a consecutive series of 12 female CFS patients, CMR measurements were compared with 36 age-matched, female controls. With cine images, LV volumes, ejection fraction (EF), mass, and WMA were assessed. T2-weighted images were analyzed for increased signal intensity, reflecting edema (i.e. inflammation). Presence of CE, reflecting fibrosis (i.e. myocardial damage), was also analyzed.

Results: When comparing CFS patients and controls, LVEF (57.9±4.3% vs. 63.7±3.7%;p<0.01), end-diastolic diameter (44±3.7mm vs. 49±3.7mm;p<0.01), as well as body surface area (BSA)-corrected LV end-diastolic volume (77.5±6.2ml/m2 vs. 86.0±9.3ml/m2;p<0.01), LV stroke volume (44.9±4.5ml/m2 vs. 54.9±6.3ml/m2;p<0.001), and LV mass (39.8±6.5g/m2 vs. 49.6±7.1g/m2;p=0.02) were significantly lower in CFS patients. WMA was observed in four CFS patients and CE (fibrosis) in three; none of the controls showed WMA or CE. None of the patients or controls showed increased signal intensity on the T2-weighted images.

Conclusion: In patients with CFS, CMR demonstrated relatively lower dimensions and a mildly reduced function of the left ventricle. The presence of myocardial fibrosis in some CFS patients suggests that further assessment of cardiac involvement is warranted as part of a further scientific exploration of CFS disease. This may imply serial non-invasive CMR examinations.

Combined Cardiac Magnetic Resonance Imaging of cardiac dimensions,left ventricular function, and myocardial tissue characteristics in female patients with chronic fatigue syndrome, by MA Olimulder et al in Ph.D. Thesis Marlon Olimulder, Chapter 8.

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Warning against overstating recovery in CFS PACE trial

Posted on 08/22/2014 by wames

Commenting on a recently published report of a large-scale evaluation of behavioral interventions for chronic fatigue syndrome (CFS), Fred Friedberg, PhD and Jenna Adamowicz warned against overstating the capacity of any currently available therapy to produce recovery from CFS.

In January 2013, the journal Psychological Medicine published an article in which Peter White reported a recovery rate of 22% to 23% from CFS after treatments given in the PACE trial, a large scale five-year study in England and Scotland which compared the effectiveness of various forms of behavioral treatment for CFS. Dr White and his colleagues reported that the trial demonstrated that “cognitive behavior therapy and graded exercise therapy were more effective treatments for chronic fatigue syndrome than specialist medical care (SMC) alone, when each was added to SMC.”

In their commentary, Dr Friedberg and Ms Adamowicz pointed out that because the term “recovery” was used to refer only to recovery from the current episode, the outcomes would more accurately be described in terms of remission rather than recovery. They noted too that the definition of recovery used in the report does not include the subjects’ perceptions of their health status, particularly if they view themselves as recovered.

They concluded that because a recovery rate below 25% still leaves the majority of patients with significant symptoms and impairments, “the publicity generated by trumpeting recovery outcomes in CFS far exceeds the relatively modest results found for most patients in behavioral treatment research.”

Dr. Friedberg is an Associate Professor and Ms. Adamowicz is a Senior Research Analyst in the Department of Psychiatry at Stony Brook University. Their commentary, titled “Reports of recovery in chronic fatigue syndrome may present less than meets the eye,” was published in the August 2014 issue of Evidence Based Mental Health. It was first published on line on May 21, 2014. The recovery data from the PACE trial were reported in an article by Peter D. White, et al. published in the October 13 edition of Psychological Medicine under the title “Recovery from chronic fatigue syndrome after treatments given in the PACE trial.”

from Fred Friedberg Warns Against Overstating Recovery Results in Studies of Chronic Fatigue Syndrome

Extract:

What is already known on this topic?
The definitions of recovery in chronic fatigue syndrome (CFS) are numerous, as are the amount of intervention and naturalistic studies designed to assess illness recovery. In a recent systematic review of 22 studies, recovery percentages ranged from 0% to 66%. White et al report a recovery rate of 22% to 23% in their active behavioural intervention conditions. This rate corresponds with findings of a previous intervention study in CFS that used similar recovery criteria.

What this paper adds?

  • A controlled comparison of three recognised behavioural interventions for CFS incorporating an unusually large sample (thus, greater power) in comparison to previous clinical trials.
  • The use of multiple case definitions of CFS with varying criteria to assess clinical recovery. Thus, the percentage of patients who no longer met full illness criteria can be determined with reference to several definitions, rather than just one.
  • Operationalised criteria for recovery that include both symptom and functional changes as informed by population data. Such precise criteria make clear how recovery …

Reports of recovery in chronic fatigue syndrome may present less than meets the eye by Dr Fred Friedberg, Jenna Adamowicz in Evid Based Mental Health doi:10.1136/eb-2013-101652

King College London PACE trial research

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Irritable bowel syndrome and chronic fatigue 6 years after Giardia infection

Posted on 08/21/2014 by wames

ABSTRACT
Background: Functional gastrointestinal disorders and fatigue may follow acute infections. This study aimed to estimate the persistence, prevalence and risk of irritable bowel syndrome and chronic fatigue six years after Giardia infection.

Methods: Controlled prospective study of a cohort of 1252 individuals who had laboratory confirmed Giardia infection during a waterborne outbreak in 2004. In total, 748 cohort cases (exposed) and 878 matched controls responded to a postal questionnaire six years later (in 2010). Responses were compared to data fromthe same cohort three years before (in 2007).

Results: The prevalences of irritable bowel syndrome (39.4%) by Rome III criteria and chronic fatigue (30.8%) in the exposed group six years after giardiasis were significantly elevated compared to controls with adjusted RRs of 3.4 (95% CI: 2.9 to 3.9) and 2.9 (95% CI: 2.3 to 3.4) respectively. In the exposed group the prevalence of irritable bowel syndrome decreased by 6.7% (RR: 0.85; 95% CI: 0.77 to 0.93), while the prevalence of chronic fatigue decreased by 15.3%from three to six years after Giardia infection (RR:
0.69; 95% CI: 0.62 to 0.77). Giardia exposure was a significant risk factor for persistence of both conditions and increasing age was a risk factor for persisting chronic fatigue.

Conclusions: Giardia infection in a non-endemic setting is associated with an increased risk for irritable bowel syndrome and chronic fatigue six years later. The prevalences of both conditions decrease over time indicating that this intestinal protozoan parasite may elicit very long term, but slowly self-limiting, complications.

Irritable bowel syndrome and chronic fatigue six years after Giardia infection: a controlled prospective cohort study by K Hanevik et al in Clin Infect Dis.  2014 Aug 12. pii: ciu629 [Epub ahead of print]

 

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ME Cover up – Severe ME Day August 8th 2014

Posted on 08/06/2014 by wames

the ME cover up

Many people with ME feel they are invisible to the outside world and that ME is not taken seriously.

“We may not be able to present ourselves to the world because of severe ill health but we want to be listened to and heard by the appropriate authorities and to receive services, and appropriate help.

We would also like to see more biomedical research undertaken, and cognisance taken of the body of biomedical research that exists at present.

We want the medical profession and general public to understand the seriousness of the illness and remember that underneath the sheet there is still a human being.”

 

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Chronic fatigue and RLS can be caused by iron deficiency

Posted on 08/05/2014 by wames

Iron deficiency (absolute or functional) is commonly observed (frequently without associated anemia) in up to one third of old people. Iron deficiency is the most cause of anemia in adults.

Many non hematological consequences of iron deficiency are described like: cardiac failure, mood or cognitive disorders, chronic fatigue or restless leg syndrome.

Iron deficiency can be orally or with intravenous iron replacement treates if necessary. Long term compliance of patients orally treated for iron deficiency is poor mainly because of fair tolerability of drugs.

New regimen of intravenous iron replacement are now available when orally iron administration can not be achieved. In functional iron deficiency iron intravenous replacement seems especially relevant. However further controlled studies are necessary to assess their clinical benefits.

Iron deficiency in elderly people: Clinical presentation and management, by P Chassagne, O Bahri, F Roca in Geriatr Psychol Neuropsychiatr Vieil. 2014 Jun 1;12

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Lyme disease becoming more widespread & needs new healthcare approach

Posted on 08/04/2014 by wames

Abstract

Lyme disease, caused by Borrelia burgdorferi and transmitted by ticks, was initially considered a recent, rare and regional occurrence. We now have evidence that very similar bacteria infected humans in Europe during the ice age (Keller et al., 2012).

Evidence-based data are scarce therefore many aspects of the disease remain controversial (Auwaerter et al., 2011; Lee and Vielmeyer, 2011; Perronne, 2012), but in 2013 the Centers for Disease Control and Prevention (CDC) revised their annual estimates from 30,000 cases to 300,000 cases in the USA alone. Having dramatically increased their numbers, the CDC are now calling Lyme disease “a tremendous public health problem in the United States” (CDC, 2011).

The lack of a gold standard for diagnosis makes producing accurate statistics difficult. Some pathogenic strains belonging to the B. burgdorferi sensu lato complex have a worldwide distribution, yet they are rarely considered or tested for (Varela et al., 2004; Lopes de Carvalho et al., 2009; Rudenko et al., 2009; Stanek and Reiter, 2011; Branda and Rosenberg, 2013; Clark et al., 2013; Lee et al., 2014; Margos et al., 2014).

Borrelia miyamotoi, for instance, phylogenetically close to relapsing fever borreliae, is now recognized as a cause of Lyme-like disease and relapsing fever in Asia, Europe and North America. It usually does not cross react with B. burgdorferi tests (Branda and Rosenberg, 2013; Lee et al., 2014). A novel isolate of Borrelia has been isolated by PCR in a post-treatment serum from a patient with neurologic Lyme disease (Lee et al., 2014).

These recent historical, geographical and microbial data should prompt the medical community to realize that cases of persisting post tick-bite syndromes are probably due to multiple pathogens and that these occult infections will require a new approach if not an actual paradigm shift.

From conclusion:

Reliable testing is essential to investigate the many syndromes of unclear origin that may mimic many other medical disorders. Proper fundamental and clinical research is urgently needed as it would be the most cost effective way of ensuring that patients are accurately diagnosed and that the best therapeutic strategies are decided upon (Stricker and Johnson, 2014). Development of new diagnostic methods is badly needed. New PCR methods and new genomic techniques, such as high throughput sequencing, could prove promising in identifying the complex mix of microbial agents that are probably involved (Vayssier-Taussat et al., 2013; Lee et al., 2014)

Lyme and associated tick-borne diseases: global challenges in the context of a public health threat, by C Perronne in Front Cell Infect Microbiol, 2014 Jun 3; 4: 74

 

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Joint hypermobility and autonomic hyperactivity common in CFS, IBS, FM etc.

Posted on 07/31/2014 by wames

Abstract

Objective
To test the hypothesis that Joint hypermobility and autonomic dysfunction are over-expressed within neurodevelopmental disorders. Joint hypermobility is a widespread poorly recognized connective tissue condition with affected individuals overrepresented among panic and anxiety disorders, irritable bowel syndrome, fibromyalgia, and chronic fatigue.

The relevance of hypermobility to neuropsychiatric disorders of developmental origin is currently unknown, despite anecdotal case reports and clinical suspicion of a link. Autonomic nervous system dysregulation, typically postural tachycardia syndrome is often found in hypermobile individuals. Interestingly, differences in amygdala and superior temporal cortex anatomy have been reported in hypermobile populations and functional abnormalities in patients with autism.

Method
Thirty-seven adults with neurodevelopmental disorder, 205 patients attending general psychiatric clinics without neurodevelopmental diagnosis and 29 healthy controls were recruited. Hypermobility was assessed using the Beighton scale (BS) and autonomic symptoms using the Autonomic Symptoms and Quality of Life Score (ASQoLS: orthostatic, gastrointestinal, bladder, secretomotor, sudomotor and sleep domains.

Results
The neurodevelopmental cohort had a mean age of 34.6 years (27 male). Nineteen had Attention Deficit Hyperactivity Disorder (ADHD), 4 Autistic Spectrum Disorder (ASD), 1 Tourette Syndrome (TS) and the remainder combinations of ADHD, ASD and TS. Nine had co-morbid affective disorder. Eighteen patients (48.6%) were classified as hypermobile (BS>=4) compared to 67/204(32.7%) in the general psychiatric group (p=0.048) and 3/29(10.3%) in healthy controls (p=0.007) and this prevalence was also significantly higher that reported in a large general population cohort (1156/6022, 19.19%, p=<0.001).

Mean autonomic dysfunction score was significantly higher in the neurodevelopmental cohort compared to controls (mean±SEM: neurodevelopmental disorder patients, 45.8±4.86; controls, 8.5±1.62). This effect was seen across all sub-scales of the ASQoLS. Total autonomic dysfunction score did not differ significantly between neurodevelopmental cohort and the general psychiatric group, however neurodevelopmental disorder patients had significantly higher scores on orthostatic and gastrointestinal disturbance subscales.

Conclusion
We demonstrate for the first time that rates of hypermobility and symptoms of autonomic dysfunction are particularly high in adults with neurodevelopmental diagnoses. It is likely that the importance of hypermobility and autonomic dysfunction to the generation and maintenance of psychopathology in neurodevelopmental disorders is poorly appreciated.

Work underway (autonomic testing, fMRI) will test the hypothesis that autonomic reactivity and interoceptive sensitivity predispose to the expression of psychiatric symptoms, particularly anxiety. It is further hypothesized that inefficient neural co-ordination of efferent autonomic drive with imprecise interoceptive representations may be amplified in hypermobile individuals. In hypermobility, this mechanism might explain increased vulnerability to stress sensitive and developmental neuropsychiatric conditions.

Joint hypermobility and autonomic hyperactivity: relevance to neurodevelopmental disorders by JA Eccles et al in  J Neurol Neurosurg Psychiatry 2014;85:e3

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Human herpesvirus 6 and the nervous system

Posted on 07/31/2014 by wames

Human herpesvirus (HHV)-6 is a β-herpesvirus that infects most infants by 2 years of age and persists in a variety of host cells after primary infection, with intermittent reactivation typically during periods of immunosuppression.

HHV-6 has two closely related species, HHV-6A and B, which are both neurotropic and can be detected in up to 85% of brain samples at autopsy. This pleiotropic virus has been implicated in many central nervous system (CNS) diseases, including febrile seizures (FS), epilepsy due to medial temporal lobe sclerosis, multiple sclerosis, encephalomyelitis, progressive multifocal leukoencephalopathy, chronic fatigue syndrome, and cognitive dysfunction.

The significance of HHV-6 infection is often controversial due to the challenge implicit in attributing disease to a commensal virus of the brain. Studies have used a variety of unstandardized techniques on an array of sample sources to detect HHV-6, making direct comparisons problematic. In addition, many detection methods do not distinguish between latent and active infection. However, there is accumulating evidence implicating HHV-6 as a cause of CNS pathology, especially in FS and encephalitis.

Treatment options are limited, fraught with side-effects, and poorly studied. Whether HHV-6 is a commensal pathogen of the brain, marker of immune dysregulation, trigger of autoimmunity, or directly neurotoxic mediator of CNS disease will remain uncertain for many CNS diseases until more refined studies are performed.

Human herpesvirus 6 and the nervous system, by JA Hill and N Venna in Handb Clin Neurol. 2014; 123: 327-55

HHV-6 & Chronic Fatigue Syndrome (CFS/ME)

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DSQ is valid tool for assessing symptoms in ME/CFS

Posted on 07/30/2014 by wames

Abstract

Background:

The diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is complex and largely based on self-reported symptom profiles. The field lacks consensus for a singular case definition and heterogeneous samples make comparability across studies difficult.

Purpose:

The present study sought to validate a comprehensive self-report measure of ME/CFS symptomatology to aid in clinical and research assessment.

Methods:

Exploratory factor analysis (EFA) was used to establish the underlying factor structure of the DePaul Symptom Questionnaire (DSQ) using a well-characterized sample of individuals (92.6% met the Fukuda et al. criteria and/or the Clinical Canadian Criteria) and this structure was then tested on a less stringently recruited sample of individuals utilizing a confirmatory factor analysis (CFA). Convergent and discriminant validity of the DSQ were also examined utilizing alternative measures of symptomatology and functioning.

Results:

A three-factor solution was found using EFA (Neuroendocrine, Autonomic, and Immune Symptoms; Neurological/Cognitive Dysfunction; Post-Exertional Malaise) and the fit of this factor structure was adequate for the second sample. The DSQ was found to have good convergent and discriminant validity.

Conclusions:

The DSQ is a valid tool for assessing ME/CFS symptoms. There may be two core ME/CFS symptom clusters: post-exertional malaise and cognitive dysfunction.

Validating a measure of myalgic encephalomyelitis/chronic fatigue syndrome symptomatology by Abigail A. Brown & Leonard A. Jason in Fatigue: Biomedicine, Health & Behavior Volume 2, Issue 3, 2014

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