ME: Chronic Fatigue Syndrome or a distinct clinical entity?

Posted on 10/18/2012 by wames

Dr Ellen Goudsmit has updated the 1999 paper written by her, Dr Charles Shepherd, Christine Dancey and Sandra Howes outlining new criteria for research into ME and challenging the view that CFS and ME are the same condition.  The research article concludes:

These new criteria were devised to increase diagnostic precision and allow researchers to compare and contrast ME and CFS. They will not only enable scientists to test the assumption that the two conditions are identical, but they should also help to clarify whether interventions which have been shown to be effective in one can be safely used to treat the other. Finally, if evidence indicates that ME is a distinct subgroup, the criteria may not only prove to be of value in research, but also in clinical practice. they should also help to clarify whether interventions which have been shown to be effective in one can be safely used to treat the other.

ME: Chronic Fatigue Syndrome or a distinct clinical entity?

Other articles written by Dr Goudsmit based on this research article:

Classic ME: the basics
ME or CFS: that is the question

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CFS patients respond differently to gastrointestinal disorders following giardia outbreak

Posted on 10/18/2012 by wames

A Swedish study finds differences in the cells of people with both CFS and gastronitestinal disorders, suggesting immunological abnormality.  Abstract:

BACKGROUND:  A Giardia outbreak was associated with development of post-infectious functional gastrointestinal disorders (PI-FGID) and chronic fatigue syndrome (PI-CFS). Markers of immune dysfunction have given conflicting results in CFS and FGID patient populations. The aim of this study was to evaluate a wide selection of markers of immune dysfunction in these two co-occurring post-infectious syndromes.

METHODS:   48 patients, reporting chronic fatigue in a questionnaire study, were clinically evaluated five years after the outbreak and grouped according to Fukuda criteria for CFS (n=19) and idiopathic chronic fatigue (n=5) and Rome II criteria for FGIDs (n=54). 22 Giardia exposed non-fatigued individuals and 10 healthy unexposed individuals were recruited as controls. Peripheral blood lymphocyte subsets were analyzed by flow cytometry.

RESULTS:  In peripheral blood we found significantly higher CD8 T-cell levels in PI-FGID, and significantly lower NK-cell levels in PI-CFS patients. Severity of abdominal and fatigue symptoms correlated negatively with NK-cell levels. A tendency towards lower T-cell CD26 expression in FGID was seen.

CONCLUSION:  Patients with PI-CFS and/or PI-FGID 5 years after Giardia lamblia infection showed alterations in NK-cell and CD8-cell populations suggesting a possible immunological abnormality in these conditions. We found no significant changes in other markers examined in this well-defined group of PI-CFS and PI-FGID elicited by a gastrointestinal infection. Controlling for co-morbid conditions is important in evaluation of CFS-biomarkers.

Immunophenotyping in post-giardiasis functional gastrointestinal disease and chronic fatigue syndrome

 

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Lixdexamfetamine dimesylate helps functioning, fatigue and pain in CFS subgroup

Posted on 10/18/2012 by wames

A drug commonly used for ADHD (Attention deficit hyperactivity disorder) has been trialled by JL Young in the USA.  Lixdexamfetamine dimesylate is in the amphetamine family and is rapidly absorbed into the body and converted to dextroamphetamine, which is responsible for CNS (Central Nervous System) activity.

Abstract

The purpose of this study was to assess the efficacy of lisdexamfetamine dimesylate (LDX) for the treatment of executive functioning deficits in adults (ages 18-60) with chronic fatigue syndrome (CFS).

The study’s primary outcome measure was the Behavior Rating Inventory of Executive Function-Adult (BRIEF-A). Secondary outcome measures were standardized assessments of fatigue, pain and global functioning.

Twenty-six adults who met criteria for CFS and had clinically significant executive functioning deficits were randomly assigned to a flexible morning dose (30, 50, 70mg/day) of either placebo or LDX for a six-week trial. The data were analyzed with standard analysis of variance (ANOVA) procedures.

Participants in the LDX group showed significantly more positive change in BRIEF-A scores (M(change)=21.38, SD=15.85) than those in the placebo group (M(change)=3.36, SD=7.26), p=0.005, d=1.46. Participants in the active group also reported significantly less fatigue and generalized pain relative to the placebo group.

Although future studies with LDX should examine whether these benefits generalize to larger, more diverse samples of patients, these results suggest that LDX could be a safe and efficacious treatment for the executive functioning deficits often associated with CFS. The possibility that dopaminergic medications could play an important role addressing the symptoms of CFS is also discussed.

Use of lixdexamfetamine dimesylate in treatment of executive functioning deficits and chronic fatigue syndrome: A double blind, placebo-controlled study.

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Antiviral valganciclovir helps CFS subgroup

Posted on 10/18/2012 by wames

In a study by Dr Jose Montoya in the USA half of CFS patients suffering from HHV-6 and EBV viruses make an improvement of 30% or more.

Abstract

Valganciclovir has been reported to improve physical and cognitive symptoms in patients with chronic fatigue syndrome (CFS) with elevated human herpesvirus 6 (HHV-6) and Epstein–Barr virus (EBV) IgG antibody titers. This study investigated whether antibody titers against HHV-6 and EBV were associated with clinical response to valganciclovir in a subset of CFS patients.

An uncontrolled, unblinded retrospective chart review was performed on 61 CFS patients treated with 900 mg valganciclovir daily (55 of whom took an induction dose of 1,800 mg daily for the first 3 weeks). Antibody titers were considered high if HHV-6 IgG ≥1:320, EBV viral capsid antigen (VCA) IgG ≥1:640, and EBV early antigen (EA) IgG ≥1:160. Patients self-rated physical and cognitive functioning as a percentage of their functioning prior to illness.

Patients were categorized as responders if they experienced at least 30% improvement in physical and/or cognitive functioning. Thirty-two patients (52%) were categorized as responders. Among these, 19 patients (59%) responded physically and 26 patients (81%) responded cognitively. Baseline antibody titers showed no significant association with response. After treatment, the average change in physical and cognitive functioning levels for all patients was +19% and +23%, respectively (P < 0.0001). Longer treatment was associated with improved response (P = 0.0002).

No significant difference was found between responders and non-responders among other variables analyzed. Valganciclovir treatment, independent of the baseline antibody titers, was associated with self-rated improvement in physical and cognitive functioning for CFS patients who had positive HHV-6 and/or EBV serologies. Longer valganciclovir treatment correlated with an improved response.

Response to valganciclovir in chronic fatigue syndrome patients with human herpesvirus 6 and Epstein–Barr virus IgG antibody titers.

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Resources for the diagnosis and management of CFS/ME in primary care

Posted on 10/09/2012 by wames

Researchers from Manchester have developed resources to support the diagnosis and management of CFS/ME in primary care.

Abstract

NICE guidelines emphasise the need for a confident, early diagnosis of Chronic Fatigue Syndrome/ Myalgic Encephalitis (CFS/ME) in Primary Care with management tailored to the needs of the patient. Research suggests that GPs are reluctant to make the diagnosis and resources for management are currently inadequate. This study aimed to develop resources for practitioners and patients to support the diagnosis and management of CFS/ME in primary care.

Methods

Semi structured interviews were conducted with patients, carers, GPs, practice nurses and CFS/ME specialists in North West England. All interviews were audio recorded,  transcribed and analysed qualitatively using open explorative thematic coding. Two patient involvement groups were consulted at each stage of the development of resources to ensure that the resources reflect everyday issues faced by people living with CFS/ME.

Results

Patients and carers stressed the importance of recognising CFS/ME as a legitimate condition, and the need to be believed by health care professionals. GPs and practice nurses stated that they do not always have the knowledge or skills to diagnose and manage the condition. They expressed a preference for an online training package. For patients, information on getting the most out of a consultation and the role of carers was thought to be important. Patients did not want to be overloaded with information at diagnosis, and suggested information should be given in steps. A DVD was suggested, to enable information sharing with carers and family, and also for those whose symptoms act as a barrier to reading.

Conclusion

Rather than use a top-down approach to the development of training for health care practitioners and information for patients and carers, we have used data from key stakeholders to develop a patient DVD, patient leaflets to guide symptom management and a modular e-learning resource which should equip GPs to diagnose and manage CFS/ME effectively, meet NICE guidelines and give patients acceptable, evidence-based  information.

Developing resources to support the diagnosis and management of Chronic Fatigue Syndrome/Myalgic Encephalitis (CFS/ME) in primary care. A qualitative study

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ME/CFS Primer for clinical practitioners

Posted on 09/28/2012 by wames

The International Association for Chronic Fatigue Syndrome/ME (IACFS/ME) has published a Primer for clinical practitioners. It is available as a PDF file and is free to download, though donations are invited. A 42 page spiral bound print booklet can be purchased for $15 from the BookPatch website.

ME/CFS: a Primer for Clinical Practitioners has been developed by an international team of practitioners led by Dr Fred Friedberg.

Highlights of the Primer include:

  • A summary of the pathophysiological effects of ME/CFS to date
  • A user-friendly diagnostic worksheet utilizing the Canadian Consensus Criteria
  • Straightforward treatment suggestions covering an array of ME/CFS symptoms
  • Emphasis on post-exertional malaise and activity management
  • Sections on special populations/ problems (e.g. severely affected, pediatric ME/CFS, pregnancy)

 

 

 

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Pioneer for ME, David Lewis 1939- 2012

Posted on 09/19/2012 by wames

Paediatrician David Lewis has died of pancreatic cancer at the age of 73.  As a consultant paediatrician at Bronglais hospital, Aberystwyth, he was one of very few doctors in Wales to take ME seriously in the 1980s and 1990s. His care and concern for children who were often misunderstood and sometimes mistreated, led him to respond to calls for help from many parts of Wales and England. He was willing to travel far and wide to diagnose very sick children, support their families, and speak out against abuse (as in the case of Ean Proctor in the Isle of Man).

His clinic in Aberystwyth accepted adult patients for a time, even though this brought him into conflict with the hospital management. He had an acute intelligence and refreshingly open minded attitude to medicine. He practised homeopathy and recommended treatments that were often considered ‘alternative’. He was sometimes ridiculed by fellow doctors but he did not allow that to stop him looking for ways to safely relieve the suffering of his patients.

Dr Lewis was greatly missed when he retired and he will be remembered as a Pioneer for the physical illness Myalgic Encephalomyelitis. Many patients and families will always be grateful that he believed and supported them when no-one else in the medical community would.

Obituary

 

 

 

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Herpesvirus and parvovirus found in ME/CFS

Posted on 08/30/2012 by wames

A Latvian study was published in Advances in Virology: Association of active human herpesvirus-6, -7 and parvovirus b19 infection with clinical outcomes in patients with myalgic encephalomyelitis/chronic fatigue syndrome.

Abstract:

Frequency of active human herpesvirus-6, -7 (HHV-6, HHV-7) and parvovirus B19 (B19) infection/coinfection and its association with clinical course of ME/CFS was evaluated. 108 ME/CFS patients and 90 practically healthy persons were enrolled in the study.

Viral genomic sequences were detected by PCR, virus-specific antibodies and cytokine levels-by ELISA, HHV-6 variants-by restriction analysis. Active viral infection including concurrent infection was found in 64.8% (70/108) of patients and in 13.3% (12/90) of practically healthy persons. Increase in peripheral blood leukocyte DNA HHV-6 load as well as in proinflammatory cytokines’ levels was detected in patients during active viral infection.

Definite relationship was observed between active betaherpesvirus infection and subfebrility, lymphadenopathy and malaise after exertion, and between active B19 infection and multijoint pain. Neuropsychological disturbances were detected in all patients.

The manifestation of symptoms was of more frequent occurrence in patients with concurrent infection. The high rate of active HHV-6, HHV-7 and B19 infection/coinfection with the simultaneous increase in plasma proinflammatory cytokines’ level as well as the association between active viral infection and distinctive types of clinical symptoms shows necessity of simultaneous study of these viral infections for identification of possible subsets of ME/CFS.

 

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Clonidine in the treatment of adolescent CFS: pilot study

Posted on 08/07/2012 by wames

Norwegian researchers have completed a trial into the use of Clonidine with adolescents with CFS. Clonidine is used for a wide range of disorders including hypertension, neuropathic pain, ADHD, anxiety/panic disorder, migraine and hot flushes.

ABSTRACT:

BACKGROUND:

This pilot study (ClinicalTrials.gov ID: NCT01507701) assessed the feasibility and safety of clonidine in adolescent chronic fatigue syndrome (CFS). Specifically, we assessed clonidine dosage in relation to a) plasma concentration levels, b) orthostatic cardiovascular responses, and c) possible adverse effects.

FINDINGS:

Five adolescent CFS patients (14-19 years old) received 50 μg clonidine twice per day during 14 days in an open, uncontrolled design. Plasma concentration of clonidine was assayed by standard laboratory methods. Changes in orthostatic cardiovascular responses were assessed by a 20o head-up tilt-test (HUT). Adverse effects were mapped by a questionnaire.After 14 days, C0 median (range) of clonidine was 0.21 (0.18-0.36) μg/L, and Cmax median (range) of clonidine was 0.41 (0.38-0.56) μg/L. Also, supine blood pressures and heart rate were lower during clonidine treatment, and the HUT response was closer to the normal response. No serious adverse effects were registered.

CONCLUSION:

Clonidine 50 μg BID seems to be safe enough to proceed from a pilot study to a controlled trial in a select group of adolescents with CFS (ClinicalTrials.gov ID: NCT01040429).

Clonidine in the treatment of adolescent chronic fatigue syndrome: a pilot study for the NorCAPITAL trial

 

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Mitochondrial dysfunction found in ME/CFS

Posted on 07/20/2012 by wames

Abstract:

The objectives of this study are to test the hypothesis that the fatigue and accompanying
symptoms of Chronic Myalgic Encephalomyelitis/ Fatigue Syndrome are in part due to defects in energy provision at the cellular level, and to understand the pathophysiology of the defects so that effective medical intervention can be implemented.

We performed an audit of 138 patients (ages 18-65) diagnosed with ME/CFS and attending a private practice.

The patients and 53 normal, healthy controls had the ATP Profile test carried out on neutrophils from a 3-ml venous blood sample. This test yields 6 numerical factors that describe the availability of ATP and the efficiency of oxidative phosphorylation in mitochondria. Other biomedical measurements, including the concentration of cell-free DNA in plasma, were made.

The results of the audit are compared with the controls and a previous cohort of 61 patients.

We find that all patients tested have measureable mitochondrial dysfunction which correlates with the severity of the illness.

The patients divide into two main groups differentiated by how cellular metabolism attempts to compensate for the dysfunction.

Comparisons with exercise studies suggest that the dysfunction in neutrophils also occurs in other cells. This is confirmed by the cell-free DNA measurements which indicate levels of tissue damage up to 3.5 times the normal reference range.

The major immediate causes of the dysfunction are lack of essential substrates and partial blocking of the translocator protein sites in mitochondria.

The ATP Profile is a valuable diagnostic tool for the clinical management of ME/CFS.

Mitochondrial dysfunction and the pathophysiology of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)  Norman E Booth, Sarah Myhill and John McLaren-Howard

Press release and comment by Booth, Myhill and McLaren-Howard

 

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