Being a housebound digital academic

Posted on 11/21/2017 by wames

The Sociological review blog post, by Anna Wood, 17 November 2017:  Being a Housebound Digital Academic

I have been housebound with a chronic health condition (Myalgic Encephalomyelitis, ME) since 2008.

Yet over the last few years I’ve published three papers and submitted a fourth, given a number of conference talks and reviewed for some top journals. I have even recently started a paid research position, 5 hours per week at the University of Edinburgh in the Centre for Digital Education Research. I’m still 90% housebound, so there have been some significant challenges. Many things have coincided to make this possible: supportive colleagues, the ability to work flexibly and from home, changing research field – I now focus on the use of technology within higher (physics) education, but the most crucial of all has been the wide range of digital tools available.

Digital tools help me in a variety of ways. They help me to communicate with others asynchronously (for example e-mail) and synchronously (for example meetings via Skype). They help me to network, for example through twitter and to give live talks at conferences. They enable me to work with others through collaborative software and to minimise my energy expenditure by using software that converts text to speech and speech to text.

Read more about the technologies Anna finds helpful:

  • Studying Online
  • Twitter
  • Video conferencing
  • Recording Conference Talks
  • Speech to Text and Text to Speech
  • Collaboration

 

Anna Wood is a Research Associate at the University of Edinburgh. She holds a PhD in Physics and is also a graduate from the Digital Education MSc Programme. She blogs at The Science of Scientific Learning and tweets at @annakwood.

 

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A groundbreaking discovery could ease symptoms for millions suffering from chronic fatigue, FM & IBS

Posted on 11/20/2017 by wames

WTVFN blog post, 17 Nov 2017: Massachusetts researchers make major discovery about IBS, fibromyalgia

Researchers at Massachusetts General Hospital have made a groundbreaking discovery that could ease symptoms for millions of people suffering from conditions such as chronic fatigue, fibromyalgia and irritable bowel syndrome.

Dr. Anne Louise Oaklander said a good proportion of patients diagnosed with those health issues may actually have a disease called small fiber polyneuropathy, or SFPN.

This is a disorder in which nerve cells found under the skin are attacked by the body’s immune system.

The resulting damage can cause numerous symptoms, including gastrointestinal discomfort and feeling like the skin is on fire.

“The problem is their skin looks perfectly normal, and there’s no evidence that anything’s wrong,” Oaklander said.

Along with others, Oaklander recently published a study in which they found that drugs called immunomodulators can be effectively used to treat SFPN, though these drugs may not work in every patient because every presentation of the disorder is different.

She said patients who learn they have SFPN often feel liberated.

“It’s pretty routine that I have patients who break down and cry when they get an answer for the first time to something that’s been disabling them for years or decades,” Oaklander said.

One of those patients is MaryEllen Talbot, who had initially been diagnosed with fibromyalgia before learning she actually has SFPN.

“This diagnosis is from a biopsy, so it’s not subjective, it’s objective. It’s something they see on the lab,” she said.

Talbot isn’t alone. Because of the varying symptoms from case to case, Oaklander said the number of people with SFPN could be huge.

“Maybe it’s tens of millions of people around the world who have it, maybe it’s hundreds of millions of people, but either way this is not a rare disease,” she said.

Medical xpress, 8 Nov 2017: Autoimmunity may underlie newly discovered painful nerve-damage disorder

The team examined medical records for 55 patients who met their criteria for SFPN diagnosis, had no evidence of non-immune causes and who were treated at MGH with intravenous immunoglobulin at a starting dose of 2 grams per kilogram of weight every four weeks. All but four were treated for at least three months, the others discontinuing because of side effects. The team studied nine types of follow-up data, all of which showed improvement – 74 percent of the 51 patients rated their symptoms as improved after treatment, as did 77 percent of their physicians. For 8 patients, symptoms improved so much they were able to taper off and eventually discontinue all treatment.

 

 

The team examined medical records for 55 patients who met their criteria for SFPN diagnosis, had no evidence of non-immune causes and who were treated at MGH with intravenous immunoglobulin at a starting dose of 2 grams per kilogram of weight every four weeks. All but four were treated for at least three months, the others discontinuing because of side effects. The team studied nine types of follow-up data, all of which showed improvement – 74 percent of the 51 patients rated their symptoms as improved after treatment, as did 77 percent of their physicians. For 8 patients, symptoms improved so much they were able to taper off and eventually discontinue all treatment.
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Families sought for trial of classroom robot as avatar for child with ME

Posted on 11/17/2017 by wames

Invest in ME Research newsletter, November 2017: Removing isolation from young people with ME

IiMER invites families that:

  • have a child who has been forced to stay at home due to ME,
  • and who would like to participate in a trial of a robot at their school
  • and work with IiMER and No Isolation to describe the results, then please contact them.

There will be three robots to trial.

About the project:

The Norwegian start up – No isolation – has developed a robot that helps children and young people with long-term illness participate in the classroom on their own terms.

Initially, a trial of three AV1 robots will be set up involving families who currently have a child with ME who is unable to attend school, or whose regular attendance is compromised by ME.

Children and young people with long-term illness such as ME do not need to be excluded from their friends’ activities and progress and schools have a responsibility not to ignore them – something which can lead to long term discrimination.

The robot, called AV1, acts as the students’ eyes, ears and voice in the classroom on days where they cannot be physically present.

The student controls the robot with an app on a tablet. When the student raises their hand, a light flashes on AV1’s head.

The robot can be turned 360 degrees, so the student can see the entire classroom and talk to other students.

If the student does not feel like actively participating, they communicate it by turning on a blue light on AV1’s head.

Research fellow Jorun Børsting and senior lecturer Alma Leora Culén at the Institute for Informatics, University of Oslo, are researching the technology needs of ME-patients. Having studied the use of AV1 among nine children and youths suffering from ME they see a big advantage in the fact that the robot is designed with ME-patients in mind. Børsting stresses that the robot cannot fully replace normal attendance at school or home teaching, but act as a supplement.

More info in November newsletter   02380 643736 or email at info@investinme.org

 

 

 

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BMJ Best practice guide on CFS

Posted on 11/16/2017 by wames

BMJ Best Practice Guide, updated Nov 2017: Chronic fatigue syndrome

Written by Dr James N Baraniuk
Reviewed by Dr Rosemary Vallings, Dr Abijhit Chaudhuri

Summary:
Chronic fatigue syndrome (CFS) is characterised by a sudden or gradual onset of persistent disabling fatigue, post-exertional malaise (PEM, exertional exhaustion), unrefreshing sleep, cognitive and autonomic dysfunction, myalgia, arthralgia, headache, and sore throat and lymph nodes, with symptoms lasting at least 6 months.

Exertional exhaustion is the critical aspect that distinguishes myalgic encephalomyelitis/CFS from other nociceptive, interoceptive, and fatiguing illnesses.

The lack of energy may be caused by autoimmune and metabolomic dysfunction that reduces mitochondrial ATP production.

The primary goals of management are to provide a supportive healthcare environment with a team of occupational, physio, and other appropriate therapists who will manage symptoms and improve functional capacity.

The chronic but fluctuating disabilities require substantial lifestyle changes to plan each day’s activities carefully, conserve energy resources for the most important tasks, schedule rest periods to avoid individuals overtaxing themselves, and to improve the quality of sleep.

Medications are not curative. Pharmacotherapy is indicated to treat pain, migraine, sleep disturbance, and comorbid conditions such as irritable bowel syndrome, anxiety, or depression.

More information (mostly behind a paywall) on:

Definition

Theory: Epidemiology; Aetiology; Case history

Diagnosis: Approach; History and exam; Investigations; Differentials; Criteria

Management:  Approach; Treatment algorithm; Emerging; Patient discussions

Follow up: Monitoring; Complications; Prognosis

Resources: Guidelines; References; Patient leaflets; Evidence

 

Comment:

Virology blog post, by Steven Lubet and David Tuller, 13 Nov 2017: Trial By Error : The Surprising New BMJ Best Practice Guide

Something has changed.

That’s the only explanation for the recent publication of a “Best Practice” guide for “chronic fatigue syndrome” (behind a paywall, unfortunately) from the BMJ Publishing Group. This thing is good. It’s very good, in fact. One bottom line at this stage for any treatment guide is the following: Would it lead a clinician to prescribe cognitive behavior therapy or graded exercise therapy for patients with ME, as opposed to those suffering from a vague fatiguing illness? The answer here is an unequivocal no.

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Vitamin D status in CFS/ME

Posted on 11/15/2017 by wames

Research abstract:

Vitamin D status in chronic fatigue syndrome/myalgic encephalomyelitis: a cohort study from the North-West of England, by KE Earl, et al in BMJ Open 2017 Nov 8;7(11)

OBJECTIVE:
Severe vitamin D deficiency is a recognised cause of skeletal muscle fatigue and myopathy. The aim of this study was to examine whether chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is associated with altered circulating vitamin D metabolites.

DESIGN:
Cohort study.

SETTING:
UK university hospital, recruiting from April 2014 to April 2015.

PARTICIPANTS:
Ninety-two patients with CFS/ME and 94 age-matched healthy controls (HCs).

MAIN OUTCOME MEASURES:
The presence of a significant association between CFS/ME, fatigue and vitamin D measures.

RESULTS:
No evidence of a deficiency in serum total 25(OH) vitamin D (25(OH)D2 and 25(OH)D3 metabolites) was evident in individuals with CFS/ME. Liquid chromatography tandem mass spectrometry (LC-MS/MS) analysis revealed that total 25(OH)D was significantly higher (p=0.001) in serum of patients with CFS/ME compared with HCs (60.2 and 47.3 nmol/L, respectively). Analysis of food/supplement diaries with WinDiets revealed that the higher total 25(OH) vitamin D concentrations observed in the CFS/ME group were associated with increased vitamin D intake through use of supplements compared with the control group. Analysis of Chalder Fatigue Questionnaire data revealed no association between perceived fatigue and vitamin D levels.

CONCLUSIONS:
Low serum concentrations of total 25(OH)D do not appear to be a contributing factor to the level of fatigue of CFS/ME

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The presence of co-morbid mental health problems in a cohort of adolescents with CFS

Posted on 11/14/2017 by wames

Research abstract:

The presence of co-morbid mental health problems in a cohort of adolescents with chronic fatigue syndrome, by Maria Elizabeth Loades, Katharine A Rimes, Sheila Ali, Kate Lievesley, Trudie Chalder in Clinical Child Psychology and Psychiatry [Preprint November 2, 2017]

Objective:
To report on the prevalence of mental health disorders in adolescents with chronic fatigue syndrome (CFS) and to compare the diagnoses identified by a brief clinician-administered psychiatric interview with self-report screening questionnaires.

Design:
Cross-sectional study.

Setting:
Consecutive attenders to specialist CFS clinics in the United Kingdom.

Patients:
N = 52 adolescents, age 12-18 years with CFS.

Measures:
Self-report questionnaires and a brief structured psychiatric diagnostic interview, administered by a researcher.

Results:
On the psychiatric interview, 34.6% met a diagnosis of major depressive disorder and 28.8% had an anxiety disorder. Of these, 15% had co-morbid anxiety and depression.

Those with a depression diagnosis reported significantly greater interference on the school and social adjustment scale. They also scored significantly higher on trait anxiety, but not
on state anxiety.

There were no differences between those who had an anxiety disorder and those who did not on fatigue, disability or depressive symptoms. Children’s Depression Inventory (CDI) score was associated with a depression diagnosis on the psychiatric interview. However, neither the state nor the trait subscale of the State-Trait Anxiety Inventory (STAI) was associated with an anxiety diagnosis.

Conclusion:
Clinicians should assess for the presence of anxiety and depressive disorders in adolescents with CFS using a validated psychiatric interview. Treatment should be flexible enough to accommodate fatigue, depression and anxiety. Transdiagnostic approaches may suit this purpose. Goals should include pleasurable activities particularly for those who are depressed.

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Brain chemistry profiles shows CFS & Gulf War Illness as unique disorders

Posted on 11/13/2017 by wames

Georgetown Medical Centre Press Release, 10 November 2017: Brain Chemistry Profiles Shows Chronic Fatigue Syndrome and Gulf War Illness as Unique Disorders

Researchers at Georgetown University Medical Center have found distinct molecular signatures in two brain disorders long thought to be psychological in origin — chronic fatigue syndrome (CFS) and Gulf War Illness (GWI).

In addition, the work supports a previous observation by GUMC investigators of two variants of GWI. The disorders share commonalities, such as pain, fatigue, cognitive dysfunction and exhaustion after exercise.

Their study, published in Scientific Reports, lays groundwork needed to understand these disorders in order to diagnosis and treat them effectively, says senior investigator, James N. Baraniuk, MD, professor of medicine at Georgetown University School of Medicine. Narayan Shivapurkar, PhD, assistant professor of oncology at the medical school, worked with Baraniuk on the research.

The changes in brain chemistry — observed in levels of miRNAs that turn protein production on or off — were seen 24 hours after riding a stationary bike for 25 minutes.

“We clearly see three different patterns in the brain’s production of these molecules in the CFS group and the two GWI phenotypes,” says Baraniuk. “This news will be well received by patients who suffer from these disorders who are misdiagnosed and instead may be treated for depression or other mental disorders.”

Chronic fatigue syndrome affects between 836,000 and 2.5 million Americans, according to a National Academy of Medicine report. The disorder was thought to be psychosomatic until a 2015 review of 9,000 articles over 64 years of research pointed to unspecified biological causes. Still, no definitive diagnosis or treatment is available.

Gulf War Illness has developed in more than one-fourth of the 697,000 veterans deployed to the 1990-1991 Persian Gulf War, Baraniuk and his colleagues have reported in earlier work.

Gulf War veterans were exposed to combinations of nerve agents, pesticides and other toxic chemicals that may have triggered the chronic pain, cognitive, gastrointestinal and other problems, Baraniuk says. Although the mechanisms remain unknown, the study provides significant insights into brain chemistry that can now be investigated.

This study focused on spinal fluid of CFS, GWI and control subjects who agreed to have a lumbar puncture. Spinal taps before exercise showed miRNA levels were the same in all participants. In contrast, miRNA levels in spinal fluid were significantly different after exercise. The CFS, control and two subtypes of GWI groups had distinct patterns of change. For example, CFS subjects who exercised had reduced levels of 12 different mRNAs, compared to those who did not exercise.

The miRNA changes in the two GWI subtypes add to other differences caused by exercise. One subgroup developed jumps in heart rate of over 30 beats when standing up that lasted for two to three days after exercise. Magnetic resonance imaging showed they had smaller brainstems in regions that control heart rate, and did not activate their brains when doing a cognitive task. In contrast, the other subgroup did not have any heart rate or brainstem changes, but did recruit additional brain regions to complete a memory test. The two groups were as different from each other as they were from the control group.

Finding two distinct pathophysiological miRNA brain patterns in patients reporting Gulf War disease “adds another layer of evidence to support neuropathology in the two different manifestations of Gulf War disease,” he says.

Baraniuk adds that miRNA levels in these disorders were different from the ones that are altered in depression, fibromyalgia, and Alzheimer’s disease, further suggesting CFS and GWI are distinct diseases.

The study was supported by funding from The Sergeant Sullivan Center, Dr. Barbara Cottone, Dean Clarke Bridge Prize, Department of Defense Congressionally Directed Medical Research Program (CDMRP) W81XWH-15-1-0679, and National Institute of Neurological Diseases and Stroke R21NS088138 and RO1NS085131.

Baraniuk and Shivapurkar are named as inventors on a patent application that has been filed by Georgetown University related to the technology described.

Research paper: Exercise – induced changes in cerebrospinal fluid miRNAs in Gulf War Illness, Chronic Fatigue Syndrome and sedentary control subjects

Science blog: Chronic fatigue syndrome, Gulf War illness unique disorders

Daily Mail: Chronic fatigue syndrome is NOT all in the mind- but caused by changes in brain chemistry, a study finds

  • Chronic fatigue syndrome and Gulf War Illness are caused by changes in brain chemistry and are not  psychological disorders
  • Both disorders cause pain, physical and mental fatigue, cognitive dysfunction and flu-like symptoms
  • Controversy has raged for nearly 30 years on whether the disorders were genuine illnesses
  • Now researchers from Georgetown University have found changing levels in molecules in sufferers’ brains

Health rising: Different Triggers – Different Illnesses: Exercise Affects Brains of ME/CFS and GWI Patients Differently

Psychology today: Chronic Fatigue Syndrome: More Research Backs Up Patients

ME Association: MEA Summary Review: Changes in ‘brain chemistry’ after exercise in CFS, Gulf War Illness and sedentary controls 

 

 

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Brain imaging study crowdfunding request – Dr Michael VanElzakker

Posted on 11/13/2017 by wames

Massachusetts General Hospital press release, 11 November 2017: Support research into Myalgic Encephalomyelitis (Chronic Fatigue Syndrome)

Goal: USD $29,900 / £22,854

About the Campaign:

Myalgic Encephalomyelitis (Chronic Fatigue Syndrome) represents a challenging intersection of immunology, neurology, endocrinology, and other fields. Investigating such a broad and complex condition requires access to technology, instrumentation, and methods that are not available at the average doctor’s office.

The Martinos Center for Biomedical Imaging in Boston is one of the world’s premier research centers. This unique facility consistently produces high-impact research largely due to a highly collaborative organization and culture. Clinical researchers such as neuroscientists, neurologists, and immunologists are able to push the envelope in their respective fields because they work alongside bioengineers, radiologists, and physicists with expertise in imaging technology. Thus we have the ability to answer challenging research questions due to the advances in the technology that are happening on our own campus.

Dr. Michael VanElzakker is a Martinos Center research fellow affiliated with Massachusetts General Hospital, Harvard Medical School, and Tufts University. He has a background in neuroendocrinology and clinical neuroscience and is known for an influential hypothesis of ME (CFS) that centers on the intersection between the nervous and immune systems.

Our ongoing research program includes three projects:

1. Neuroinflammation scanning

2. Scanning before and after exercise challenge

3. Targeting cellular activity in the Nucleus of the Solitary Tract

Your contribution will fund these studies. Each answers novel questions in novel ways, elucidating the mechanisms of ME (CFS) pathology.

(We’ve set a goal of paying for 5 scans, which will be enough to use for pilot data in applying for more funding to finish a well-powered study. If someone with a lot of resources wants to fund the whole study, contact me.)

More about Michael VanElzakker

8% of goal reached on 12 November 2017      Find out how to donate

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What it’s like to travel again after 14 years of being housebound

Posted on 11/12/2017 by wames

The Telegraph blog post, by Juliette Llewellyn, 10 Nov 2017: What it’s like to travel again after 14 years of being housebound

It was the summer of 1995. I was 24 and in the GP surgery waiting room about to get travel vaccinations ahead of a year-long trip to Nepal and India, where I was planning to work as a tree-planting volunteer in Uttar Pradesh. I had never been and I couldn’t wait. Trekking in the Himalayas was at the top of my bucket list and I had already been imagining how I would capture the snow-capped mountains from atop the pinnacle. But the holiday never materialised.

My multiple jabs, which were administered over the course of two months, went terribly wrong. Instead of protecting me against infections, the cocktail of vaccinations triggered an adverse reaction. What should have helped me travel the world prevented me doing so – and no one could tell me for how long.

For the first few days following the initial set of jabs, I had severe muscular pain all over my body and was almost paralysed on my right side. Weak and fatigued, I stayed in bed for several days. I tried every painkiller available at the chemist’s but nothing was working. This obviously wasn’t just a simple case of the flu, so I went back to my GP, but he couldn’t work out what was wrong either. As a last resort, I saw other physicians for a second opinion but even they couldn’t establish an accurate prognosis.

Finally, one doctor referred me to the University Hospital of Wales where a consultant did an extensive investigation. I was diagnosed with myalgic encephalomyelitis (ME) and fibromyalgia, and I also developed multiple chemical sensitivity or MCS, an allergic-type reaction to low levels of chemicals in everyday products, which is a symptom of ME. All these conditions combined meant that I was unable to lift my body off the bed or even feed myself.

The consultant was unable to confirm that my ailments were the direct consequence of the vaccinations, however he was unable to find any other probable cause. The initial symptoms appeared when I had my first few jabs and progressed rapidly during the two months while having the rest.

Travel was impossible as I struggled to remaster the basics of daily living. I was housebound for a long time and only glimpsed the world through friends’ postcards. My preoccupations for the day were rudimentary: How was I going to get dressed? How was I going to eat? Life before then was adventure-filled, with trips to Europe and destinations further afield such as Egypt and Russia. I wanted desperately to again explore beyond the four walls of my bedroom.

Finally, in 2009, after 14 long years of rehabilitation and therapy, I got the chance. It had been more than a decade since I had last seen the sea, so I organised a trip to Findhorn near Inverness for a coastal retreat and walks along the beach.

When I arrived, I was like a child – full of joy and excitement at the sight and sound of water lapping against the shore. I dipped my feet in the cool water and felt so grateful that I was less restricted than before. Sure, I still packed a walking stick, but I could walk on my own.

The distances were modest and I ambled along small stretches of the six-mile sands. There was a real sense of freedom exploring alone for the first time in so long. My newfound confidence was bolstered by a lot of preparation: several weeks of mapping out my itinerary, extra support from a personal assistant, researching accommodation that was suitable given my chemical sensitivities, contacting proprietors beforehand with health requests and booking travel assistance at the airport.

Read more about her travels

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A comparison of case definitions for ME & CFS

Posted on 11/09/2017 by wames

Research abstract:

A Comparison of Case Definitions for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome, by Madison Sunnquist, Leonard A Jason, P Nehrke, Ellken M Goudsmit in Chronic Dis Manag. 2017;2(2). pii: 1013. Epub 2017 May 21

Many professionals have described the clinical presentation of myalgic encephalomyelitis (ME), but recent efforts have focused on the development of ME criteria that can be reliably applied.

The current study compared the symptoms and functioning of individuals who met the newly-developed Institute of Medicine (IOM) clinical criteria to a revised version of the London criteria for ME. While 76% of a sample diagnosed with chronic fatigue syndrome (CFS) met the IOM criteria, 44% met the revised London criteria. The revised London criteria identified patients with greater physical impairment.

The results of this study indicate the need for a standard case definition with specific guidelines for operationalization. The application of case definitions has important implications for the number of individuals identified with ME, the pattern of symptoms experienced by these individuals, and the severity of their symptoms and functional limitations. Sample heterogeneity across research studies hinders researchers from replicating findings and impedes the search for biological markers and effective treatments.

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