30% school absence due to ME in Norway

Posted on 02/16/2017 by wames

Phoenix rising forum post, 6 Feb 2017: Norwegian prime minister concerned about young ME-patients.

Norwegian media have reported several places today the prime minister’s concern for young ME patients.

Last year she asked Ministry of Health and Care Services to find out how many young people have ME. Today the report was given to her, and showed that about 270 pupils were absent from school last year for more than three months due to ME. The prime minister is worried the number might be even higher.

She says to the newspaper Aftenposten:

These are conditions that may not have received enough priority because they do not fit into obvious categories. It’s not like when a child has cancer. Then the hospitals and communities know what they should line up with, says Erna Solberg.

From the article:

  • 27 percent of the municipalities / districts and 44 percent of counties have indicated that the figures are incomplete, but according to the Government, this is the best numbers you can expect to get now.
  • Overall 1877 pupils were absent for more than three months in the previous school year. 735 had another known diagnosis than ME, and 873 had unknown diagnosis. 14 percent of the long absence is explained by ME.

Google translation of article

More articles on this:

Adresseavisa: “This strikes a lot of families”   Google translation

NRK: “Erna wants to help young people with ME”   Google translation

 

 

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Google translate version of the first link – http://bit.ly/2lfvL7r Google translate version of the second link – http://bit.ly/2jUewHs Google translate version of the third link – http://bit.ly/2kyPO1y

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A reexamination of the Cognitive Behavioral model of CFS

Posted on 02/15/2017 by wames

Thesis abstract:

Cognitive behavioral theories of chronic fatigue syndrome (CFS) assert that cognitions and behaviors perpetuate the fatigue and impairment that individuals with CFS experience (Wessely, Butler, Chalder, & David, 1991).

Vercoulen and colleagues (1998) utilized structural equation modeling to empirically develop a cognitive behavioral model of CFS. The resulting model indicated that attributing symptoms to a physical cause, focusing on symptoms, and feeling less control over symptoms were associated with increased fatigue. Additionally, individuals who attributed symptoms to a physical cause reported lower activity levels and more fatigue and impairment.

However, in an attempt to replicate this model, Song and Jason (2005) demonstrated that the model displayed inadequate fit statistics for a well-characterized group of individuals with CFS; the model resulted in appropriate fit for individuals with chronic fatigue from psychiatric conditions. Despite uncertainty surrounding the model’s validity, it continues to be cited to support the application of cognitive behavioral and graded exercise therapies to individuals with CFS (White et al., 2011).

The current study utilized second-stage conditional process modeling (i.e., moderated mediation) to reexamine the behavioral pathway of the Vercoulen et al. (1998) model. This pathway is characterized by the association among causal attribution for symptoms, activity level, and fatigue and impairment.

The use of a large sample allowed for a robust examination of the pathway, and moderators isolated potential factors that contributed to previous studies’ discrepant results.

Findings were generally inconsistent with the Vercoulen et al. (1998) model. Results indicated that individuals did not reduce their activity level due to illness beliefs. Although activity level and impairment were significantly correlated, this correlation decreased as case definition stringency increased.

Furthermore, a canonical correlation analysis demonstrated that activity level, impairment, and fatigue could be conceptualized as indicators of illness severity. Rather than implicating activity level as the cause of fatigue and impairment, the relation among these variables may be due to their shared association with the latent construct of illness severity.

This study represents the second attempt to replicate the Vercoulen et al. (1998) model; neither the Song and Jason (2005) nor the current study resulted in findings consistent with the original model. As this model provides the theoretical foundation for cognitive behavioral and graded exercise treatments for ME and CFS, these failed replication attempts support patient-expressed concerns about the appropriateness and efficacy of these treatments.

A reexamination of the Cognitive Behavioral Model of Chronic Fatigue Syndrome: investigating the cogency of the model’s behavioral pathway, by Madison Lindsay Sunnquist. Master of Arts thesis, Dept of Psychology, DePaul University, Chicago, 26 Jul 2016 [Published online: February 8, 2017]

Full thesis

 

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Metabolic switch may bring on CFS

Posted on 02/14/2017 by wames

New Scientist article, by Andy Coghlan, 13 February 2016: Metabolic switch may bring on chronic fatigue syndrome

It’s as if a switch has been flicked. Evidence is mounting that chronic fatigue syndrome (CFS) is caused by the body swapping to less efficient ways of generating energy.

Also known as ME or myalgic encephalomyelitis, CFS affects some 250,000 people in the UK. The main symptom is persistent physical and mental exhaustion that doesn’t improve with sleep or rest. It often begins after a mild infection, but its causes are unknown. Some have argued that CFS is a psychological condition, and that it is best treated through strategies like cognitive behavioural therapy.

But several lines of investigation are now suggesting that the profound and painful lack of energy seen in the condition could in many cases be due to people losing their ability to burn carbohydrate sugars in the normal way to generate cellular energy.

Instead, the cells of people with CFS stop making as much energy from sugar as usual, and start relying more on lower-yielding fuels, such as amino acids and fats. This kind of metabolic switch produces lactate, which can cause pain when it accumulates in muscles.

Together, this would explain both the shortness of energy, and why even mild exercise can be exhausting and painful.

Read the full article for an overview of amino acid anomalies found in ME/CFS by Øystein Fluge in Norway and Chris Armstrong in Australia.

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Narratives of young people living with a diagnosis of CFS/ME

Posted on 02/13/2017 by wames

Thesis abstract:

CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) is a distressing and potentially debilitating condition. It can also be understood as a contested condition, surrounded by controversy about its nature, causes and treatment. Previous research indicates that those affected experience this climate of contestation as a troubling and
discrediting assault, not only on the nature of their condition, but also on their identities. However, little attention has been paid to the voices of young people living with CFS/ME.

This thesis extends a relatively small literature in new directions, focusing a constructionist, discursive narrative lens on the accounts of ten young people (aged 13-18) living with a diagnosis of CFS/ME.

Narratives constructed during repeated interviews over a year, and drawing on multimodal materials collected by participants over that period, were analysed for their content, structure and performance, with reference to the local and broader contexts of their production.

This analysis demonstrates that teenagers construct rich, multi-layered narratives with the potential to enhance understanding of their situation and broader features of the social world. As they speak of the onset of illness, attempts to live with enduring, unpredictable symptoms and their psychosocial consequences, and (for some) the possibility of
“moving on” from the worst of illness, this analysis throws new light on how young people’s narratives can be understood as simultaneously constructing the condition (“M.E.”) and the identities of those involved (“me” and others), in ways that engage with, reflect and resist prevailing discourses.

It is argued that the discursive contexts of CFS/ME and adolescence raise particular challenges for young people as they try to construct credible narratives that convey the full extent of their difficulties, while resisting stigmatising identities (eg, as “complaining”, “lazy” or otherwise “not normal”). This analysis highlights implications for them, their families and those who work professionally with them; and for the ongoing social construction of CFS/ME in young people.

There are powerful cultural pressures on YP living with CFS/ME to demonstrate that they are not “lazy”, and are doing everything possible to try to improve their situation – and ideally, that they are successful in making progress over time, suggesting a path either back towards health or towards other “personal growth” and learning. Though this applies to many living with illness, it is particularly salient in the context of cultural pressures for YP to demonstrate increasing levels of autonomy and self-mastery. Professionals should be conscious of their own wish (and pressure) for YP to produce such narratives of progress; and that this may silence other important stories, including those of ongoing problems and a need for continuing support.     [p287]

Narratives of young people living with a diagnosis of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME), by  Wendy Solomons University of Hertfordshire, School of Psychology, Doctoral Thesis, Mar 2016 [published online 6 Feb 2017]

Download full thesis

 

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Video lectures from English & Norwegian researchers in Norwich

Posted on 02/10/2017 by wames

Invest in ME public talks in Norwich on ME/CFS biomedical research, published 7 Feb 2017

An event held in Norwich in January 2017 gave the public a chance to hear about some of the biomedical research being undertaken on the debilitating condition ME (Myalgic Encephalomyelitis) by a team from the Haukeland University Hospital in Bergen, Norway. [1 hr 39 mins]

Complex disease strategy at NRP: establishing Norwich as a European centre of excellence for ME/CFS research

  • Starts 12.39 mins: Prof Simon Carding, Norwich medical school:

B lymphocyte depletion on CFS/ME – efforts to understand disease mechanisms

  • Starts at 40 mins: Kari Sorland
  • Starts at 58 mins: Ingrid G Rekeland
  • Starts at 1.19 mins:  Dr Øystein Fluge

Link to youtube

 

 

 

 

FoodResearch

 

Published on 7 Feb 2017

 

An event held in Norwich in January 2017 gave the public a chance to hear about some of the biomedical research being undertaken on the debilitating condition ME (Myalgic Encephalomyelitis).

 

The event was hosted by IFR and Invest in ME Research, a charity promoting biomedical research and education into ME, which is aiming to establish a UK centre of excellence, to improve ME diagnosis and coordinate research into treatments and cures.

 

The talks were introduced by Dr Ian Gibson, former MP for Norwich North and from the Invest in ME Research Advisory Board.

Speakers

Simon Carding (12m34s)

Kari Sorland (40m11s)

Ingrid Rekeland (58m44s)

Oystein Fluge (1h19m34s)

 

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic disease causing long-term health problems, characterised by severe exhaustion, as well as pain and dysfunction of the brain, gut and immune system. ME/CFS has no effective treatments, and its causes still remain unknown.

 

Tackling ME, and bringing hope of relief to the estimated 250,000 sufferers in the UK needs high quality biomedical research and international collaboration.

 

Dr Øystein Fluge, a senior consultant and oncologist at Haukeland University Hospital in Norway spoke about ground-breaking research he is leading on Rituximab. This drug has been used to treat leukaemia and lymphoma, as it targets B-cells, a type of blood cell. In 2004, Dr Fluge noticed that ME patients being treated for lymphoma with Rituximab also saw substantial improvements in their ME symptoms.

Subsequently pilot studies and a randomised, blinded, placebo controlled study also showed positive results, with a large, multi-site Phase III clinical study now running.

 

Dr Fluge was visiting Norwich to discuss future collaborations over another Rituximab trial being carried out on the Norwich Research Park with Professor Simon Carding from the Institute of Food Research (IFR) and University of East Anglia. Professor Carding also introduced the audience to research in his own group, who are looking for causes and treatments for ME in the gut and its microbial communities. The Norwich Research Park is establishing itself as a hub for biomedical research into ME, in the UK and Europe and through international collaborations.

 

More information

 

For more information, please follow Invest in Me Research and our own websites and social media channels. Whilst we are working closely with the group of Dr Oystein Fluge in Bergen, Norway to help with the development and planning of a trial in Norwich similar to the ones currently underway in Norway, if the results from the Norway trial are positive. The outcome of this trial is critical to determining what we would plan to do in Norwich. Until this is known, and we have consulted with clinical colleagues, it is impossible to say what a future Norwich trial will consist of, or what the recruitment process will be.

 

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The experiences of healthcare professionals working in chronic fatigue services

Posted on 02/10/2017 by wames

Thesis abstract:

The first part of this thesis is a systematic review and narrative synthesis of healthcare professionals’ experiences of working with people with Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (CFS/ME).

A total of 15 qualitative studies met the inclusion criteria. There was significant overlap of themes across the 15 studies. Themes were organised into four categories: Contesting the Legitimacy of CFS/ME, Emotional Burden, Stereotyping the CFS/ME Patient, and Tension in Clinician-Patient Communication and Relationships.

The review identified a need for further research to better understand differences in
understandings of CFS/ME, including the understandings and experiences of specialist CFS/ME healthcare professionals.

The second part of this thesis is an empirical paper describing a study that used Interpretative Phenomenological Analysis (IPA) to explore the lived experiences of healthcare professionals working in specialist CFS/ME services. Interviews were conducted with eight clinicians from a range of healthcare professions.

Four superordinate themes were identified: Safe Haven, Challenges of Understanding, Person-Centredness, and Recovery Road. Some of these findings support issues identified by previous research, but novel themes were also discovered. Clinical
implications and suggestions for further research are discussed.

A qualitative study investigating the experiences of healthcare professionals working in chronic fatigue services, by Elizabeth May. University of Southampton, School of Psychology, Doctoral Thesis May 2016 [published online 30 Jan 2017]

Download full thesis

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Thousands could have Lyme disease without knowing

Posted on 02/09/2017 by wames

ITV news Wales report, 8 Feb 2017: Thousands could have Lyme disease without knowing

A campaign to raise awareness of Lyme disease has found that thousands of people could be living with the condition, having been diagnosed with something else.

Lyme disease is spread to humans through infected ticks. The NHS says up to 3,000 people are diagnosed with the condition every year.

It can be treated effectively if it’s detected early enough, otherwise those with the disease may develop severe and long-lasting symptoms.

The Fight Lyme Now campaign surveyed Lyme disease sufferers across the UK.

It found almost one in five of those who had a laboratory test on the NHS tested positive for the ‘infective agent’ of Lyme disease after receiving a diagnosis of a different condition previously.

Some of the alternative conditions people had been diagnosed with were chronic fatigue syndrome, psychiatric disorders, autoimmune diseases, irritable bowel syndrome, myalgic encephalomyelitis (ME), multiple sclerosis and Alzheimer’s disease.

 

 

“The overall finding is that there are a lot of people out there with conditions that might actually be infected by the… I call it the sort of ‘signature agent’ of Lyme disease – and that’s an organism called Borrelia.”          – Dr Chris Newton, Fight Lyme Now

Read the full article for more about Lyme disease

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Dr Chris Armstrong talks about the role of gut health in ME/CFS

Posted on 02/09/2017 by wames

Huffington post Australia article, by Emma Brancatisano, 2 Feb 2017: How Gut Bacteria Is Helping To Unpack Chronic Fatigue Syndrome

Can improving a person’s gut health help?

Extracts:

Dr Chris is part of a team of researchers at Melbourne University who have been studying the metabolites (aka products of metabolism) and gut microbiota in the faeces, blood and urine of those with ME/CFS.

Their research, replicated in later studies, has shown a microbial difference in those with the disorder. Essentially, the gut bacterial microbiome in chronic fatigue syndrome patients isn’t normal…

According to Armstrong, changes to the gut bacteria are common in a lot of disorders.

“This is a common trend — we are trying to hone in on how this relationship exists for people with CFS and we want to know whether we can improve their symptoms by improving their gut health.”

Now, Armstrong and his team are working on longitudinal studies that will make alterations to patient’s diets to study the potential benefits.

“We might look at giving them more amino acids or more lipids in a metabolised form and seeing whether this aids them,” Armstrong said.

“If we can induce improvement and notable changes in their bacteria and metabolism then we may develop markers and more importantly a system for monitoring and treating individual patients.”

Read the full article

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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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