Review of dietary & nutrition interventions for CFS/ME

Posted on 02/08/2017 by wames

Review abstract:

Background: Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is characterised by unexplained fatigue for at least 6 months accompanied by a diverse but consistent set of symptoms. Diet modification and nutritional supplements could be used to improve patient outcomes, such fatigue and quality of life. We reviewed and discussed the evidence for nutritional interventions that may assist in alleviating symptoms of CFS/
ME.

Methods: Medline, Cinahl and Scopus were systematically searched from 1994 to May 2016. All studies on nutrition intervention were included where CFS/ME patients modified their diet or supplemented their habitual diet on patient-centred outcomes (fatigue, quality of life, physical activity and/or psychological wellbeing).

Results: Seventeen studies were included that meet the inclusion criteria. Of these, 14 different interventions were investigated on study outcomes. Many studies did not show therapeutic benefit on CFS/ME. Improvements in fatigue were observed for nicotinamide adenine dinucleotide hydride (NADH), probiotics, high cocoa polyphenol rich chocolate, and a combination of NADH and coenzyme Q10.

Conclusions: This review identified insufficient evidence for the use of nutritional supplements and elimination or modified diets to relieve CFS/ME symptoms. Studies were limited by the number of studies investigating the interventions, small sample sizes, study duration, variety of instruments used, and studies not reporting dietary intake method. Further research is warranted in homogeneous CFS/ME populations.

Dietary and nutrition interventions for the therapeutic treatment of chronic fatigue syndrome/myalgic encephalomyelitis: a systematic review, by N. Campagnolo, S. Johnston, A. Collatz, D. Staines, & S. Marshall-Gradisnik in J Hum Nutr Diet. 2017 [published online: 25 Jan 2017]

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BBC asks about using a wheelchair on public transport

Posted on 02/07/2017 by wames

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ME/CFS studies link autonomic nervous system problems to brain

Posted on 02/07/2017 by wames

Health rising blog post, by Cort Johnson, 3 Feb 2017: Chronic Fatigue Syndrome Studies Link Autonomic Nervous System Problems to Brain

Dr. Barnden of the National Centre for NeuroImmnology and Emerging Diseases (NCNED) in Griffith University, Australia has been doing some fascinating brain imaging work in chronic fatigue syndrome (ME/CFS). Over the past six years Barnden has been publishing results from a multifaceted brain imaging study, which analyzed magnetic resonance imaging results in two ways.

ME/CFS produces a plethora of possible central nervous system (fatigue, pain, movement, gait, stimulus problems, etc. ) and autonomic nervous system symptoms (fatigue, pain, sleep, gut issues, cognition. Barnden’s unique contribution has been to tie both together by identifying parts of the brain that may be causing the autonomic nervous system problems.

The Gist

  • Increased gray matter loss associated with fatigue duration suggested that gray matter loss may be proceeding more rapidly in ME/CFS over time. (As we age we all lose gray matter.)
  • Reduced white matter levels in the midbrain suggested it may be involved in the    autonomic nervous system problems found in ME/CFS
  • Other clusters in the hypothalamus and brainstem suggested that the central autonomic network has been damaged in ME/CFS
  • The damage appears to occur in the signaling pathways that connect the network
  • The low stressors employed in the study (sitting up) suggest Barnden has identified core issues in ME/CFS.

The NIH Intramural study should be able to greatly expand on Barnden’s findings

Read the full article

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Important factors to consider when treating children with CFS/ME

Posted on 02/06/2017 by wames

Research abstract:

Background:
Paediatric Chronic Fatigue Syndrome (CFS)/Myalgic Encephalomyelitis (ME) is relatively common and disabling. Improving treatment requires the development of Patient Reported Outcome Measures (PROMs) that enable clinicians and researchers to collect patient-centred evidence on outcomes. Health professionals are well placed to provide clinical insight into the condition, its treatment and possible outcomes.

This study aimed to understand the perspectives of specialist paediatric CFS/ME health professionals and identify outcomes that are clinically important.

Methods:
Focus groups and interviews were held with 15 health professionals involved in the care of children with CFS/ME from the four largest specialist paediatric CFS/ME services in the NHS in England. A range of clinical disciplines were included and experience in paediatric CFS/ME ranged from 2 months to 25 years. Ten participants (67%) were female. Focus groups and interviews were recorded, transcribed verbatim and data were analysed using thematic analysis.

Results:
All health professionals identified the impact of CFS/ME across multiple aspects of health. Health professionals described four areas used to assess the severity of the illness and outcome in children: 1) symptoms; 2) physical function; 3) participation (school, activities and social life); and 4) emotional wellbeing.

They also described the complexity of the condition, contextual factors and considerations for treatment to help children to cope with the condition.

Conclusions:
Clinically important outcomes in paediatric CFS/ME involve a range of aspects of health. Health professionals consider increases in physical function yet maintaining school functioning and participation more widely as important outcomes from treatment. The results are similar to those described by children in a recent study and will be combined to
develop a new child-specific PROM that has strong clinical utility and patient relevance.

Important factors to consider when treating children with  chronic fatigue  syndrome/ myalgic encephalomyelitis (CFS/ME): perspectives of health professionals from specialist services, by Roxanne M. Parslow, Alison Shaw, Kirstie L. Haywood, Esther Crawley in BMC Pediatrics Vol. 17, #1, page 43, February 1, 2017

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30% of people with ME/CFS in Japan are severely affected

Posted on 02/03/2017 by wames

Article abstract:

In 2014, the Japanese Ministry for Health, Labour, and Welfare commissioned a national patient survey of ME/CFS patients in  Japan. Japan ME Association president Mieko Shinohara graciously summarizes the survey results here for us, which revealed that 30% of ME/CFS patients in Japan are severely ill patients. The study was originally published in Japanese in the July 2015 issue of Normalization.

ME/CFS Patient Survey Report: Ministry of Health Survey Reveals Harsh Reality of ME/CFS Patients in Japan, by Mieko Shinohara in IACFS/ME  newsletter, January 30, 2017

Health rising post, by Cort Johnson, 4 Feb 2017: Chronic Fatigue Syndrome (ME/CFS) Even Worse in Japan Than U.S.

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Time to Change Wales – mental health campaign to end stigma & discrimination

Posted on 02/02/2017 by wames

Time to Change Wales is the first national campaign to end the stigma and discrimination faced by people with mental health problems.

National Time to Talk Day – 2nd February 2017 – It’s a day that brings the nation together to get talking and break the silence around mental health problems.

Don’t be afraid to talk about mental health – download the talking tips card  Cymraeg

ME is not a psychiatric condition but the stresses and struggles of this debilitating and misunderstood condition can lead to depression and anxiety for some people.

Mental health problems are common. One in four of us will be affected at some point in our lives. So being able to talk about mental health is something that’s important for us all.

Have a look at the tips to help you talk to someone about their mental health problems, or if you have a mental health problem and you feel ready to talk about it there are tips on how to talk about your mental health.

Check out the TV advert to inspire you to start your conversation today!

People are talking about mental health on Facebook , so why not join in the conversation?

Remember that you can read about people’s experiences of living with mental health problems (and how to talk about it!) in the blogs.

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The interface between CFS & depression

Posted on 02/02/2017 by wames

Research abstract:

The chronic fatigue syndrome (CFS) remains a contentious and controversial presentation despite decades of systematic research into the presentation from a variety of specialties within the medical and associated disciplines.

Variously championed as an aetiology of immunological, neurological, neurophysiological, psychiatric and psychological origin, consensus on a cogent and evidenced-based pathway  has yet to be achieved. Irrespective of the ambiguity regarding aetiology, what is incontrovertible regarding this most distressing of clinical presentations is the experience of significant depression which often accompanies this disorder.

The current paper examines the potential underlying mechanisms which may determine and explain this relationship between CFS and depression and in doing so offer some insights which may be of value in the development of evidence based and scientifically-anchored interventions to improve outcomes in relation to depression specifically and improve quality of life generally, in individuals experiencing this diagnosis.

The interface between Chronic Fatigue Syndrome and Depression: a psychobiological and neurophysiological conundrum, by Derek Larkin, Colin Martin in Neurophysiologie Clinique/Clinical Neurophysiology [Preprint Date: January 26, 2017]

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Treatment and management of CFS/ME: all roads lead to Rome

Posted on 02/01/2017 by wames

Review abstract:

This comprehensive review explores the current evidence on benefits and harms of therapeutic interventions in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) and makes recommendations.

CFS/ME is a complex, multi-system, chronic medical condition whose pathophysiology remains unknown. No established diagnostic tests exist; nor are any FDA-approved drugs available for treatment. Because of the range of symptoms of CFS/ME, treatment approaches vary widely.

Studies undertaken have heterogeneous designs and are limited by sample size, length of follow-up, applicability and methodological quality. The use of rintatolimod and rituximab as well as counselling, behavioural and rehabilitation therapy programs may be of benefit for CFS/ME, but the evidence of their effectiveness is still limited.

Similarly, adaptive pacing appears to offer some benefits, but the results are debatable: so is the use of nutritional supplements, which may be of value to CFS/ME patients with lab-proven deficiencies.

To summarize, then, the recommended treatment strategies should include proper administration of nutritional supplements in CFS/ME patients with demonstrated deficiencies and personalized pacing programs to relieve symptoms and improve performance of daily activities, but a larger RCT evaluation is required to confirm these preliminary observations.

At present no firm conclusions can be drawn because the few RCTs undertaken to date have been small-scale, with a high risk of bias, and have used different case definitions. Further RCTs are now urgently needed with rigorous experimental designs and appropriate data analysis, focusing particularly on the comparison of outcomes measures according to clinical presentation, patient characteristics, case criteria and degree of disability (i.e., severely ill ME cases or bedridden).

Treatment and management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: all roads lead to Rome, by Jesus Castro-Marrero, Naia Sáez-Francàs, Dafna Santillo, Jose Alegre, in British Journal of Clinical Pharmacology [Published online: 4 January 2017]

This article has been accepted for publication and undergone full peer review but has not been through the copyediting, typesetting, pagination and proofreading process, which may lead to differences between this version and the Version of Record.

 

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Team Shareth raises over £420 for WAMES

Posted on 01/31/2017 by wames

Sharon Price writes:

Yesterday evening Gareth and I completed our 5 mile swimathon for WAMES! Woop woop!

322 lengths of 25 metres; so two and a half miles each. A long way!

We are aching but feeling very proud of ourselves. We have been supported by many kind people and have so far managed to raise just over £420. We hope this will increase before we close our fundraising page. There is still time to donate!

We also hope that other people will follow our lead and raise funds for WAMES’ vital work.

Finally, I hope that it inspires people with ME to never give up; I never believed I would have been able to achieve such a feat after 20 years of chronic ME, so never forget that sometimes there are better times to come.

Sharon Price’s Team Shareth’s Sponsored Swim for WAMES on BT MyDonate

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Giardia-specific cellular immune responses in post-giardiasis CFS

Posted on 01/31/2017 by wames

Research abstract:

Background: The role of pathogen specific cellular immune responses against the eliciting pathogen in development of post-infectious chronic fatigue syndrome (PI-CFS) is not known and such studies are difficult to perform.

The aim of this study was to evaluate specific anti-Giardia cellular immunity in cases that developed CFS after Giardia infection compared to cases that recovered well. Patients reporting chronic fatigue in a questionnaire study three years after a Giardia outbreak were clinically evaluated five years after the outbreak and grouped according to Fukuda criteria for CFS and idiopathic chronic fatigue.

Giardia specific immune responses were evaluated in 39 of these patients by proliferation assay, T cell activation and cytokine release analysis. 20 Giardia exposed non-fatigued individuals and 10 healthy unexposed individuals were recruited as controls.

Results: Patients were clinically classified into CFS (n = 15), idiopathic chronic fatigue (n = 5), fatigue from other causes (n = 9) and recovered from fatigue (n = 10). There were statistically significant antigen specific differences between these Giardia exposed groups and unexposed controls.

However, we did not find differences between the Giardia exposed fatigue classification groups with regard to CD4 T cell activation, proliferation or cytokine levels in 6 days cultured PBMCs. Interestingly, sCD40L was increased in patients with PI-CFS and other persons with fatigue after Giardia infection compared to the non-fatigued group, and correlated well with fatigue levels at the time of sampling.

Conclusion: Our data show antigen specific cellular immune responses in the groups previously exposed to Giardia and increased sCD40L in fatigued patients.

Giardia-specific cellular immune responses in post-giardiasis chronic fatigue syndrome, by Kurt Hanevik, Einar Kristoffersen, Kristine Mørch, Kristin Paulsen Rye, Steinar Sørnes, Staffan Svärd, Øystein Bruserud and Nina Langeland in BMC Immunology 2017 18:5 [Published: 28 January 2017]

 

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