Overview of vision problems in ME/CFS

ME Research UK article, 13 Feb 2017: Shifting focus

Problems with vision are relatively common among people with ME/CFS, the majority of whom report symptoms such as hypersensitivity to light, difficulties focusing, and dry eyes.

But despite their significant impact on quality of life, there is still a lack of scientific research into these symptoms, and they are not included in any clinical and diagnostic guidelines for ME/CFS.

Fortunately, scientists such as Dr Claire Hutchinson of the University of Leicester have recognised that this is an area worthy of study. Supported in part by grants from ME Research UK, Dr Hutchinson and her group have looked at a number of vision-related problems in ME/CFS.

Applying sophisticated eye-tracking techniques, they showed that patients have difficulties focusing on an object while ignoring irrelevant information, are slower than normal in shifting attention between objects, are slower and less accurate in their eye movements, and are vulnerable to pattern-related visual stress.

Furthermore, the group found that around 90% of ME/CFS patients reported a degree of eye pain and sensitivity to bright lights at least some of the time.

Also helping to fill this gap in our knowledge is a group from Antwerp in Belgium, which has recently published an interesting study on binocular vision in the American Orthoptic Journal.

The investigators carried out full orthoptic examinations on 41 patients fulfilling the CDC criteria for CFS and 41 healthy individuals matched for age and gender.

A series of tests looked at how the eye adjusts to keep focus on an object as it moves closer or further away, an adjustment that requires both vergence and accommodation.

Vergence is the simultaneous movement of the pupils of both eyes, either inwards (convergence) or outwards (divergence), while accommodation is the ability of the eye to change its focal length to maintain a clear image.

Compared with the control group, the patients in this study showed reductions in convergence, divergence and accommodation amplitude; i.e. all three factors necessary for smooth focusing.

This ties in neatly with Dr Hutchinson’s findings of difficulties in focusing, and also means, say the authors, that these factors should be routinely assessed in patients with CFS, who may also benefit from reading glasses at an earlier stage.

(Interestingly, an article in the Washington Post from 2010 suggests that convergence problems may affect one’s ability to watch 3D movies, because the special glasses require healthy convergence.)

Exercises to improve convergence may help some people, but they can be very tiring, and the investigators emphasise that there is not yet any evidence of how effective they might be in ME/CFS.

 

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Inflammation test could be tailor-made for CFS

Simmaron research blog post, by Cort Johnson, 12 February 2017: Inflammation Test Could be Tailor-Made for Chronic Fatigue Syndrome: Are the Mitochondria To Blame?

“More than 90 percent of all noncommunicable diseases of aging are associated with chronic inflammation”  David Furman  – Stanford Institute for Immunity, Transplantation and Infection

Inflammation is a big deal in the medical world.  Even mild inflammation, if it’s consistently present, is known to increase one’s risk of getting cardiovascular diseases, diabetes, Alzheimer’s and many others. Standard tests for inflammation such as C-reactive protein or cholesterol, however, are often unrevealing. For instance, inflammation is a key driver of heart disease, but the first sign for many of heart problems is still a heart attack.

Chronic, low levels of inflammation are found in many serious diseases.  Likewise it’s been said that chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) are inflammatory diseases, but standard tests for inflammation often indicate that none is present. Dr. Montoya believes that current inflammation tests are missing a lot and that future tests will be able to detect the kind of inflammation occurring in ME/CFS.

Given that tests for inflammation are relatively crude, it makes sense that significant efforts would be directed to developing a better test.  It’s no surprise that Mark Davis at Stanford is involved.

Davis’s Institute for Immunity, Transplantation and Infection is spitting out interesting findings like there’s no tomorrow.  Coffee drinkers and dark chocolate lovers were recently pleased to learn that metabolites associated with caffeine and dark chocolate were associated with increased longevity and reduced inflammation. In fact, incubating cells with these metabolites  shut off their inflammatory response.

A 2015 study overturned decades of perceived wisdom that self-attacking or auto-reactive lymphocytes are mostly weeded out early in childhood. (They’re actually very common in adults.)  Davis upended another pillar of orthodoxy when he determined that environment – the microbes, toxins, foods, etc. that we encounter – have far more of an impact on our immune system than our genes. Davis found, for instance, that a single cytomegalovirus infection causes stunningly large and permanent changes to our immune systems.

Davis is bold enough to want to replace all mouse research forever (“Free the mice!”) with a human based approach using immune modeling. In 2015 the Bill Gates foundation gave him $50 million to figure out how to build more effective vaccines. Lastly and most importantly for us, Davis is one of the luminaries sitting on the Open Medicine Foundation’s Scientific Board.  A friend of Ron Davis, I met him at the Davis’ Palo Alto fundraiser a year or so ago. (He said when Ron Davis asks you to do something, you do it).

Davis may have come up with the best test yet for inflammation – an apt subject for ME/CFS and FM patients.  In fact this test sounds like it was made for people with chronic fatigue syndrome and fibromyalgia.

Old Before Their Time?
The study originated in an attempt to quantify the link between inflammation and something perhaps pertinent to chronic fatigue syndrome and fibromyalgia – aging.  While the evidence is sketchy, it does suggest that people with ME/CFS and/or FM might be aging faster.  Decreased brain gray matter, shortened telomere lengths,  gait alterations, and the cognitive and sleep issues, could all reflect a group of patients who are aging a bit before their time.

The Study
Scientists develop inflammation test that may predict cardiovascular disease Cell Syst. 2016 Oct 26;3(4):374-384.e4. doi: 10.1016/j.cels.2016.09.009. Epub 2016 Oct 13. Defective Signaling in the JAK-STAT Pathway Tracks with Chronic Inflammation and Cardiovascular Risk in Aging Humans. Shen-Orr SS1, Furman D2, Kidd BA2, Hadad F3, Lovelace P4, Huang YW4, et. al.

Read more about the study

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30% school absence due to ME in Norway

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

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

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

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

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

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

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

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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