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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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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