Ethical classification of ME/CFS in the United Kingdom

Posted on 02/20/2019 by wames

Ethical classification of ME/CFS in the United Kingdom, by Diane O’Leary in Bioethics, 8 February 2019

 

Article abstract:

Few conditions have sparked as much controversy as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Professional consensus has long suggested that the condition should be classified as psychiatric, while patients and advocacy groups have insisted it is a serious biological disease that requires medical care and research to develop it.

This longstanding debate shifted in 2015, when U.S. governmental health authorities fully embraced medical classification and management. Given that some globally respected health authorities now insist that ME/CFS is a serious biological disease, this paper asks whether it can be ethical for the U.K. practice guideline now in development to characterize the condition as a mental health disorder.

Following a brief history of ME/CFS controversy, I offer three arguments to show that it would be unethical for the U.K. to now characterize ME/CFS as a mental health condition, considering the relevance of that conclusion for ME/CFS guidelines elsewhere and for other contested conditions.

Read the full article 

 

Posted in News | Tagged , , , | Comments Off on Ethical classification of ME/CFS in the United Kingdom

Myalgic encephalomyelitis or chronic fatigue syndrome: how could the illness develop?

Posted on 02/19/2019 by wames

Myalgic encephalomyelitis or chronic fatigue syndrome: how could the illness develop?, by Gerwyn Morris, Michael Maes, Michael Berk, Basant K. Puri in Metabolic Brain Disease pp 1–31 [Online: 13 February

Review article abstract:
A model of the development and progression of chronic fatigue syndrome (myalgic encephalomyelitis), the aetiology of which is currently unknown, is put forward, starting with a consideration of the post-infection role of damage-associated molecular patterns and the development of chronic inflammatory, oxidative and nitrosative stress in genetically predisposed individuals.

The consequences are detailed, including the role of increased intestinal permeability and the translocation of commensal antigens into the circulation, and the development of dysautonomia, neuroinflammation, and neurocognitive and neuroimaging abnormalities.

Increasing levels of such stress and the switch to immune and metabolic downregulation are detailed next in relation to the advent of hypernitrosylation, impaired mitochondrial performance, immune suppression, cellular hibernation, endotoxin tolerance and sirtuin 1 activation.

The role of chronic stress and the development of endotoxin tolerance via indoleamine 2,3-dioxygenase upregulation and the characteristics of neutrophils, monocytes, macrophages and T cells, including regulatory T cells, in endotoxin tolerance are detailed next.

Finally, it is shown how the immune and metabolic abnormalities of chronic fatigue syndrome can be explained by endotoxin tolerance, thus completing the model.

Posted in News | Tagged , , , , , , , | Comments Off on Myalgic encephalomyelitis or chronic fatigue syndrome: how could the illness develop?

Impaired health-related quality of life in adolescent ME/CFS: the impact of core symptoms

Posted on 02/18/2019 by wames

Impaired health-related quality of life in adolescent myalgic encephalomyelitis/ chronic fatigue syndrome: the impact of core symptoms, by Maria Roma, Colleen L Marden, Marissa Flaherty, Samantha E Jasion, Erica M Cranston and Peter C Rowe in Front. Pediatr. 15 Feb 209

Research abstract:

Objective:

The objectives of this study were to compare the health-related quality of life HRQOL) of a North American population of adolescents and young adults with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to (1) healthy controls (HC), (2) adolescents with ME/CFS in other countries, and (3) other forms of pediatric chronic illness, and (4) to examine the influence of the core illness symptoms in the Institute of Medicine (IOM) case definition on impaired HRQOL.

Study design:

Cross-sectional study comparing individuals with ME/CFS referred to a tertiary care Chronic Fatigue clinic and HC. Eligible participants were age 10-30 years and met the Fukuda criteria for CFS. HC were eligible if they were age 10-30 years, with self-reported good, very good, or excellent general health. Pediatric HRQOL was measured using the PedsQL (Pediatric Quality of Life Inventory) and other validated instruments.

Results:

We enrolled 55 consecutive ME/CFS patients (46 F) aged 10-23 years. From a pool of 69 potential HC we selected 55 with similar age and gender distribution for comparison. The total and subscale scores on the PedsQL and on all other measures of HRQOL indicated significantly worse function among those with ME/CFS (all P < 0.001). The self-reported frequency of post-exertional malaise (PEM) was significantly associated with the severity of impaired HRQOL (P < 0.001). Cognitive impairment had a weaker association with the PedsQL score (P=0.02). Orthostatic intolerance was present in 96% of the ME/CFS population. Of the 55 who satisfied the Fukuda criteria, 47 (85%) also satisfied the IOM criteria for the diagnosis. Those meeting the IOM criteria had worse PedsQL total scores than those meeting just the Fukuda criteria (P < 0.001).

Conclusions:

HRQOL was substantially lower in an ambulatory population of adolescents and young adults with ME/CFS than for healthy controls in North America, consistent with reports from other continents. HRQOL was also lower in ME/CFS than has been described in children with asthma, diabetes mellitus, epilepsy, eosinophilic gastroenteritis, and cystic fibrosis. The findings of this study lend further support to the inclusion of PEM, cognitive impairment, and orthostatic intolerance as core symptoms of pediatric ME/CFS.

Posted in News | Tagged , , , , , , , , | Comments Off on Impaired health-related quality of life in adolescent ME/CFS: the impact of core symptoms

Onset patterns & course of ME/CFS

Posted on 02/14/2019 by wames

Onset patterns and course of myalgic encephalomyelitis/ chronic fatigue syndrome, by Lily Chu, Ian J Valencia, Donn W Garvert, Jose G. Montoya, in Frontiers in Pediatrics 5 Feb 2019 [Published January 14, 2019]

 

Research abstract:

Background:
Epidemiologic studies of myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) have examined different aspects of this disease separately but few have explored them together.

Objective:
Describe ME/CFS onset and course in one United States-based cohort.

Methods:
150 subjects fitting Fukuda 1994 CFS criteria completed a detailed survey concerning the initial and subsequent stages of their illness.Descriptive statistics, graphs, and tables were used to illustrate prevalence and patterns of characteristics.

Results:
The most common peri-onset events reported by subjects were infection-related episodes (64%), stressful incidents (39%), and exposure to environmental toxins (20%).

For 38% of subjects, more than 6 months elapsed from experiencing any initial symptom to developing the set of symptoms comprising their ME/CFS.

Over time, the 12 most common symptoms persisted but declined in prevalence, with fatigue, unrefreshing sleep, exertion-related sickness, and flu-like symptoms declining the most (by 20%-25%). Conversely, cognitive symptoms changed the least in prevalence, rising in symptom ranking.

Pregnancy, menopause, and menstrual cycles exacerbated many women’s symptoms.

Fatigue-related function was not associated with duration of illness or age; during the worst periods of their illness, 48% of subjects could not engage in any productive activity.

At the time of survey, 47% were unable to work and only 4% felt their condition was improving steadily with the majority (59%) describing a fluctuating course.

Ninety-seven  percent suffered from at least one other illness: anxiety (48%), depression (43%), fibromyalgia (39%), irritable bowel syndrome (38%), and migraine headaches (37%) were the most diagnosed conditions.

Thirteen percent came from families where at least one other first-degree relative was also afflicted, rising to 27% when chronic fatigue of unclear etiology was included.

Conclusions:
This paper offers a broad epidemiologic overview of one ME/CFS cohort in the United States. While most of our findings are consistent with prior studies, we highlight underexamined aspects of this condition (e.g. the evolution of symptoms) and propose new interpretations of findings. Studying these aspects can offer insight and solutions to the diagnosis, etiology, pathophysiology, and treatment of this condition.

Posted in News | Tagged , , , , , , | Comments Off on Onset patterns & course of ME/CFS

School functioning in adolescents with CFS

Posted on 02/12/2019 by wames

School Functioning in Adolescents With Chronic Fatigue Syndrome, by Sarah Jenette Knight, Jennifer Politis, Christine Garnham, Adam Scheinberg and Michelle Anne Tollit in Front. Pediatr., 16 October 2018

 

Research abstract:

Background:

It is well known that adolescents with chronic fatigue syndrome (CFS) experience greater school absenteeism compared to healthy adolescents. Less is known about other important aspects of school functioning including school participation, school connectedness, and academic performance in students with CFS.

The aim of this study was to compare school functioning as a multifaceted construct in adolescents with CFS to healthy adolescent peers. We also explored whether illness factors were associated with school functioning in adolescents with CFS.

Methods:

Thirty-nine participants with CFS and 28 healthy controls (aged 13–17 years) completed a range of subjective and objective measures of school functioning, as well as measures of fatigue and emotional symptoms.

Results:

Adolescents with CFS demonstrated significantly higher rates of school absence, as well as poorer school-related quality of life, reduced school participation, poorer connectedness with school, and reduced academic performance. Fatigue severity and emotional symptoms were significantly associated with most aspects of school function.

Conclusions:

Adolescents with CFS are at increased risk for poor school functioning across a range of indicators which extend beyond school absenteeism.

… This study demonstrated that in addition to increased school absence, CFS is also associated with poorer school-related quality of life, school participation, connectedness with school, and academic achievement when compared to healthy adolescent peers. School is the principle location for the development of not only academic skills, but also cognitive, social, and community-related skills during childhood and adolescence.

Therefore, the impact that CFS has on school functioning may place these adolescents at a heightened risk of long-term maladjustment across a range of key developmental areas.

Posted in News | Tagged , , | Comments Off on School functioning in adolescents with CFS

Can you help the doctors of the future understand ME?

Posted on 02/11/2019 by wames

Can you help the doctors of the future understand ME?

What should medical students learn about ME?

Email Dr Nina Muirhead nina.muirhead@nhs.net with a list of what you think medical students should learn about the condition.

Nina has already sent a questionnaire to UK medical schools and would like to compare what is actually being taught, to what patients think should be taught, so she can campaign for better medical education.

Be aware that the amount of time available to spend on individual conditions in a medical course is very small, so select the key topics.

Dr Muirhead is a Dermatology surgeon in Buckinghamshire, a tutor & research supervisor at Cardiff University Medical school and a person with ME.

Posted in News | Tagged , , | 60 Comments

Impairments in cognitive performance in CFS are common, not related to co-morbid depression but do associate with autonomic dysfunction

Posted on 02/08/2019 by wames

Impairments in cognitive performance in chronic fatigue syndrome are common, not related to co-morbid depression but do associate with autonomic dysfunction, by
Lucy J Robinson, Peter Gallagher, Stuart Watson, Ruth Pearce, Andreas Finkelmeyer, Laura Maclachlan, Julia L Newton in  PLoS ONE 14 (2) [Published: February 5, 2019]

Research abstract:

Objectives:
To explore cognitive performance in chronic fatigue syndrome (CFS) examining two cohorts. To establish findings associated with CFS and those related to co-morbid depression or autonomic dysfunction.

Methods:
Identification and recruitment of participants was identical in both phases, all CFS patients fulfilled Fukuda criteria. In Phase 1 (n=48) we explored cognitive function in a heterogeneous cohort of CFS patients, investigating links with depressive symptoms (HADS). In phase 2 (n=51 CFS & n=20 controls) participants with co-morbid major depression were excluded (SCID). Furthermore, we investigated relationships between
cognitive performance and heart rate variability (HRV).

Results:
Cognitive performance in unselected CFS patients is in average range on most measures. However, 0-23% of the CFS sample fell below the 5thpercentile. Negative correlations occurred between depressive symptoms (HAD-S) with Digit-Symbol-Coding (r=-.507, p=.006) and TMT-A (r=-.382, p=.049). In CFS without depression, impairments of cognitive performance remained with significant differences in indices of psychomotor speed (TMT-A: p=0.027; digit-symbol substitution: p=0.004; digit-symbol copy: p=0.007; scanning: p=.034) Stroop test suggested differences due to processing speed rather than inhibition.

Both cohorts confirmed relationships between cognitive performance and HRV (digit-symbol copy (r=.330, p=.018), digit-symbol substitution (r=.313, p=.025), colour-naming trials Stroop task (r=.279, p=.050).

Conclusion:
Cognitive difficulties in CFS may not be as broad as suggested and may be restricted to slowing in basic processing speed. While depressive symptoms can be associated with impairments, co-morbidity with major depression is not itself responsible for reductions in cognitive performance. Impaired autonomic control of heart-rate associates with
reductions in basic processing speed.

Graphic from pngtree.com
Posted in News | Tagged , , , , , , , , , | Comments Off on Impairments in cognitive performance in CFS are common, not related to co-morbid depression but do associate with autonomic dysfunction

A Winter’s Tale – a former mountain climber reflects on PEM & ME/CFS/FM

Posted on 02/07/2019 by wames

Health rising blog post, by Simon Parker, 5 Feb 2019: A winter’s tale – a former mountain climber reflects on Post Exertional Malaise and ME/CFS/FM.

Fifteen years ago I was diagnosed with Fibromyalgia and ME (aka Chronic Fatigue Syndrome), a debilitating condition that includes continual pain and delayed fatigue as its primary symptoms.

I often find myself trying to explain to other people what the delayed fatigue is like by giving an example that describes the degree of exhaustion I experience …

Have you ever been Winter Climbing?

Well let me tell you a tale …

[Simon tells the story of a tough climb in snow and ice, concluding:]

I was utterly exhausted from the physical efforts of the day and I hadn’t realised that the cotton underclothing I was wearing was soaked through. A combination of sweat from the physical effort of the climb and the copious amounts of water from the snow showered over me during the boulder-in-the-gully incident had seeped through my clothes and my padded mountain jacket.

The heat from my body core was draining away and the sub-zero wind chill was not helping. Tunni walked ahead of me breaking a path and I followed, using his footsteps to make each step I took easier. By the time we reached the mouth of the cwm, I was flailing and failing. Each step required a Herculean effort and I was falling further and further behind.

I remember thinking that I would sit down and rest for a couple of minutes to recover myself. Even as I lay back into the snowdrift, I realized that if I didn’t get up, there and then I would simply fall asleep and die of exposure, and at this juncture my resolve was overcome by a fatigue that went beyond movement and reason. I had become hypothermic. Blood wasn’t reaching my legs, arms, or brain. I was drifting into that blissful state between waking and sleep.

My brain was shutting down and I didn’t care …

All I recall of the remainder of that day is a dim memory of being hauled to my feet and half-carried the remainder of the way to the car; sometime later standing in front of a roaring fire whilst being plied with large mugs of hot tea; and a long hot bath to gently re-heat my body core back to normal.

That’s what friends are for.

They save your life.

And now, in 2019, I get to feel like this whenever I do more than I’m capable of; like walking upstairs or having a bath.

And when I’m asked, ‘How fatigued are you’?

Well, this is my measure.

Paul Tunnicliffe – Diary entry for 10 Feb 1996

“Winter Climb. Black Ladders. Eastern Gully with Simon, Loads of snow. Walk-in took 4 hours! v.knackered. climb took over 4 hours. so much banked up powder the climb was hard to start, even. Si had a couple of new screws & pegs and I got placements on the first bit and belayed on the lip with no rope left. Snow in the gully proper a bit dodgy looking and loose(ish) and we ‘daggered’ about 90% of it. 5.00pm top out and v.exhausting walk out mainly with head-torches during which I lost the spare battery and Swiss army knife and Simon had an epic! A good day.”
Dedicated to Paul ‘Tunni’ Tunnicliffe and Mark Pither

Simon Parker is now 62 years old. He lives in rural Anglesey, North Wales. His story:

Simon Parker
In 2000 I was completing my PhD in Pedagogy at Bangor University North Wales and enjoying an active outdoor lifestyle, when I caught a bout of flu that resulted in increasing periods of debilitating fatigue and pain after exercising. I was diagnosed in 2003 with fibromyalgia and ME/CFS.

When I was first diagnosed I underwent the procedures recommended by my local ME/pain clinic (CBT & GET) who advised me to ‘exercise to my full capacity as the condition is temporary’ – a course of action which only made my symptoms worsen.

Luckily I found a ME/CFS consultant (Dr Sarah Myhill) whose tests and approach (leaky gut, PK diet, and mitochondrial functioning, etc.) made a huge difference in understanding the condition and in taking appropriate steps to mitigate the worst of the symptoms.

My symptoms have increased in severity over time and I now spend about 80% of my time in bed and the remaining 20% of my time trying not to over-exert myself while making time-lapse videos of blossoming trees in my locale each Spring.

I still (literally) dream of going climbing and live in hope that the current research avenues will one day lead to a cure or at the least an alleviation of the symptoms so that I could go rock climbing again with my son.

Read full article

Posted in News | Tagged , , | Comments Off on A Winter’s Tale – a former mountain climber reflects on PEM & ME/CFS/FM

Evaluation of four clinical laboratory parameters for the diagnosis of ME

Posted on 02/07/2019 by wames

Evaluation of four clinical laboratory parameters for the diagnosis of myalgic encephalomyelitis, by Kenny L. De Meirleir, Tatjana Mijatovic,
Krishnamurthy Subramanian, Karen A. Schlauch and Vincent C. Lombardi in
Journal of Translational Medicine 2018 16:322 [Published: 21 November 2018]

Research abstract:

Background:
Myalgic encephalomyelitis (ME) is a complex and debilitating disease that often initially presents with flu-like symptoms, accompanied by incapacitating fatigue. Currently, there are no objective biomarkers or laboratory tests that can be used to unequivocally diagnosis ME; therefore, a diagnosis is made when a patient meets series of a costly and subjective inclusion and exclusion criteria. The purpose of the present study was to evaluate the utility of four clinical parameters in diagnosing ME.

Methods:
In the present study, we utilized logistic regression and classification and regression tree analysis to conduct a retrospective investigation of four clinical laboratory [tests] in 140 ME cases and 140 healthy controls.

Results:
Correlations between the covariates ranged between [− 0.26, 0.61]. The best model included the serum levels of the soluble form of CD14 (sCD14), serum levels of prostaglandin E2 (PGE2), and serum levels of interleukin 8, with coefficients 0.002, 0.249, and 0.005, respectively, and p-values of 3 × 10−7, 1 × 10−5, and 3 × 10−3, respectively.

Conclusions:
Our findings show that these parameters may help physicians in their diagnosis of ME and may additionally shed light on the pathophysiology of this disease.

Posted in News | Tagged , , , , , | Comments Off on Evaluation of four clinical laboratory parameters for the diagnosis of ME

Relationship between exercise-induced oxidative stress changes & parasympathetic activity in CFS

Posted on 02/05/2019 by wames

Relationship between exercise-induced oxidative stress changes and parasympathetic activity in Chronic Fatigue Syndrome: an observational study in patients and healthy subjects, by Andrea Polli, Jessica Van Oosterwijck, Jo Nijs, Uros Marusic, Inge De Wandele, Lorna Paul, Mira Meeus , Greta Moorkens, Luc Lambrecht, Kelly Ickmans

Research abstract:

Purpose:
Oxidative stress has been proposed as a contributor to pain in patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). During incremental exercise in patients with ME/CFS, oxidative stress enhances sooner and antioxidant response is delayed. We explored whether oxidative stress is associated with pain symptoms or pain changes following exercise, and the possible relationships between oxidative stress and parasympathetic vagal nerve activity in patients with ME/CFS versus healthy, inactive controls.

Methods:
The present study reports secondary outcomes from a previous work. Data from 36 participants were studied (women with ME/CFS and healthy controls). Subjects performed a submaximal exercise test with continuous cardiorespiratory monitoring. Levels of thiobarbituric acid–reactive substances (TBARSs) were used as a measure of oxidative stress, and heart rate variability was used to assess vagal activity. Before and after the exercise, subjects were asked to rate their pain using a visual analogic scale.

Findings:
Significant between-group differences in pain at both baseline and following exercise were found (both, P < 0.007). In healthy controls, pain was significantly improved following exercise (P = 0.002). No change in oxidative stress level after exercise was found. Significant correlation between TBARS levels and pain was found at baseline (r = 0.540; P = 0.021) and after exercise (r = 0.524; P = 0.024) in patients only. No significant correlation between TBARS and heart rate variability at baseline or following exercise was found in either group. However, a significant correlation was found between exercise-induced changes in HRV and TBARS in healthy controls (r = −0.720; P = 0.001).

Implications:
Oxidative stress showed an association with pain symptoms in people with ME/CFS, but no exercise-induced changes in oxidative stress were found. In addition, the change in parasympathetic activity following exercise partially accounted for the change in oxidative stress in healthy controls. More research is required to further explore this link.

Read article in full

Posted in News | Tagged , , , , , , , , , , , , | Comments Off on Relationship between exercise-induced oxidative stress changes & parasympathetic activity in CFS