Pediatrig ME/CFS ymchwil adolygiad

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Research on pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is reviewed in this article. Many recent articles in this area highlight the existence of key differences between the adult and pediatric forms of the illness. This review article provides an overview of pediatric ME/ CFS, including epidemiology, diagnostic criteria, treatment, and prognosis. Challenges to the field are identified with the hope that in the future pediatric cases of ME/CFS can be more accurately diagnosed and successfully managed.

Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome by Leonard Jason, Kristen Barker, Abigail Brown

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Gwneud ESA ap̻l Рfideo

A video for people considering an Employment and Support Allowance appeal to Tribunal has been posted on You tube by Dr Jane Rayner, Chief Medical Member of the Social Security Tribunals service.

Making an appeal to the Social Security and Child Support tribunal (ESA) 

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CFS a FMS – yr un cyflwr?

Dr Benjamin Natelson has conducted a review of research studies comparing CFS and Fibromyalgia and is currently recruiting in the US for a number of studies into the nature of CFS and FM.

Abstract

Chronic fatigue syndrome (CFS) and fibromyalgia (FM) are medically unexplained syndromes that can and often do co-occur. For this reason, some have posited that the two are part of the same somatic syndrome-examples of symptom amplification.

This hypothesis would suggest that few differences exist between the two syndromes.

To evaluate this interpretation, we have searched the literature for articles comparing CFS to FM, reviewing only those articles which report differences between the two.

This review presents data showing differences across a number of parameters-implying that the underlying pathophysiology in CFS may differ from that of FM. We hope that our review encourages other groups to look for additional differences between CFS and FM.

By continuing to preserve the unique illness definitions of the two syndromes, clinicians will be able to better identify, understand and provide treatment for these individuals.

He has identified that the differences fall into these categories:

  • General (e.g., age of onset patterns);
  • Hormone and neurotransmitter dynamics (e.g., regarding somatomedin/growth hormone, melatonin, cortisol, spinal fluid substance P);
  • Genetic profiles, and gene expression (e.g., gene upregulation patterns after exertion)
  • Mechanisms of autonomic function;
  • Muscle biochemistry;
  • Sleep disruption patterns/factors;
  • Comorbidities (e.g., PTSD rates).

Is chronic fatigue syndrome the same illness as fibromyalgia: evaluating the ‘single syndrome’ hypothesis.

 

 

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Acupuncture ddefnyddiol ar gyfer poen cronig

An American review of studies into pain concluded that acupuncture has a clear effect in reducing chronic pain, more so than standard pain treatment, achieving 50% reduction in pain, compared to a 28% pain reduction for standard pain treatment.

Acupuncture for Chronic Pain: Individual Patient Data Meta-analysis

Other treatment modalities for pain listed by Dr Joseph Mercola in his article featuring this research include Emotional Freedom Technique (EFT), massage, chiropractic adjustments, energy psychology tools, and neuro-structural integration technique (NST.)

Alternatives to over-the-counter and prescription pain medications include astaxanthin, ginger, curcumin, boswellia, cayenne cream, bromelaine, Cetyl Myristoleate, and evening primrose, black currant and borage oils.

Acupuncture Confirmed Helpful for Chronic Pain

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Tipping point: costau torri i gefnogi pobl anabl

A new report from the Hardest Hit coalition exposes how the Government’s welfare cuts are hitting disabled people hardest:

  • 8 in 10 (85 per cent) claim losing their Disability Living Allowance (DLA) would drive them into isolation, and would leave them struggling to manage their condition (84 per cent).
  • 9 in 10 (95 per cent) fear that losing DLA would be detrimental to their health.

The Hardest Hit, a coalition of over 90 disabled people’s organisations and charities (including WAMES), produced the report ‘The Tipping Point’ which brings together a survey of over 4,500 disabled people, a poll of more than 350 independent welfare advisors, and more than 50 in-depth interviews with disabled people with varying conditions and impairments. The report reveals some shocking statistics:

  • Nearly 9 in 10 (87 per cent) disabled people said their everyday living costs are significantly higher because of their condition
  • More than three quarters (78 per cent) of disabled people said their health got worse as a result of the stress caused by their Work Capability Assessment (WCA) for Employment and Support Allowance (ESA)
  • Two thirds (65 per cent) of disabled people felt that ESA assessors did not understand their condition
  • Nearly 9 in 10 (87 per cent) welfare advisors said the constant re-assessments for benefits are damaging people’s health
  • 9 in 10 (90 per cent) welfare advisors said that too many disabled people are slipping through the net and are left without adequate support by the welfare system.

Despite much hype about the recent Paralympic Games seemingly shifting the nation’s perception of the UK’s 11 million disabled people, the number of disability hate crime incidents in England and Wales is increasing dramatically and a survey reveals plummeting levels of public support for benefits for disabled people who cannot work.

The report highlights that disabled people are twice as likely to live in poverty and even a small loss of income can tip people with a disability into greater dependence on health and social care services or friends and family.

It’s predicted that Britain’s 3.6 million people claiming disability benefits will be £9 billion worse off from 2010 to the end of this Parliament, with an estimated 500,000 disabled people expected to lose out when DLA becomes Personal Independence Payment (PIP) in April 2013.The Government claims it will claw back about £2.2 billion but the Hardest Hit coalition estimates the potential costs of abolishing DLA will be about £1.6 billion – meaning the savings are a mere drop in the ocean compared with the £9 billion being lost in tax evasion and avoidance.

And it doesn’t end there. Around 450,000 disabled households are set to lose out under the new Universal Credit (UC) system. For example, 100,000 families with disabled children stand to lose up to £28 a week.

The Hardest Hit coalition is calling on the Government to rule out targeting disabled people for further spending cuts in the next Budget and Comprehensive Spending Review.

The Government has some urgent decisions to make. It isn’t saving the money it predicts it will by targeting disabled people; it’s hemorrhaging millions and must change its approach. The coalition wants the Government to:

  • Learn from the mistakes of the WCA and ensure the assessment for Personal Independence Payment (PIP) is as fair as possible
  • Review the Work Capability Assessment (WCA)
  • Get the fundamentals of Universal Credit (UC) right
  • Provide a lasting solution to the crisis in social care which has endured years of chronic under-funding.

Darllenwch yr adroddiad llawn: The tipping point

Llofnodi’r ddeiseb: Stop the Abolition of Disability Living Allowance for Personal Independence Payments

 

 

 

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ME: Chronic Fatigue Syndrome neu endid clinigol penodol?

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

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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Personality disorders no more common in CFS

Abstract from the Belgian study:

BACKGROUND:  It is not yet clear whether chronic fatigue syndrome (CFS) is associated with elevated levels of personality disorders.

PURPOSE:  This study aims to determine the prevalence of DSM-IV axis II personality disorders among patients with CFS.

METHODS:  We examined the prevalence of personality disorders in a sample of 92 female CFS patients and in two well-matched control groups, i.e., normal community individuals (N=92) and psychiatric patients (N=92). Participants completed the assessment of DSM-IV personality disorders questionnaire (ADP-IV), which yields a categorical and dimensional evaluation of personality disorder features.

RESULTS:  The prevalence of personality disorders in CFS patients (16.3 %) was significantly lower than in psychiatric patients (58.7 %) and was similar to that in the community sample (16.3 %). Similar results were found for dimensional and pseudodimensional scores, except for the Depressive (DE) and Obsessive-Compulsive Personality Disorder (O-C) subscales. Patients with CFS had significantly higher levels of DE features compared to normal controls and similar dimensional scores on the O-C scale compared to psychiatric controls.

CONCLUSIONS:  Although the CFS sample was characterized by depressive and obsessive-compulsive personality features, this study provides no evidence for the assumption that these patients generally show a higher prevalence of axis II pathology. Given the conflicting findings in this area, future studies using multiple measures to assess personality disorders in CFS are needed to substantiate these findings.

Prevalence of DSM-IV Personality Disorders in Patients with Chronic Fatigue Syndrome: A Controlled Study.

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Lixdexamfetamine dimesylate helps functioning, fatigue and pain in CFS subgroup

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

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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