Impact of ME/CFS on patients & their family – volunteers needed

Posted on 03/04/2019 by wames

Impact of ME/CFS on patients & their family:

 a clinical research study by a third-year medical student at Cardiff University

 

Aim of the project:

The aim of this project is to gain a better insight into the many ways in which ME/CFS can manifest itself in patients with ME/CFS and to explore the impact this has on the patients and their family members.

To help with this, two short ‘quality of life’ questionnaires will be sent to everyone who wishes to participate in this research.

  • All participants must be at least 18 years of age.
  • Participants should have a diagnosis of ME/CFS made by a doctor or practicing healthcare professional.
  • Please try to assess whether you are likely to be well enough to take part at the specified time, but participation is voluntary and you can withdraw at any time if necessary.
  • All family members do not need to live at the same address.

The student is looking for a maximum of 40 families to take part, each with up to 4 family members.

Questionnaires will be sent out the week commencing 11th March 2019

Do you want to take part, or do you have questions?

The person with ME/CFS, (or primary carer if severely affected) should email the research supervisor Dr Nina Muirhead    nina.muirhead@nhs.net

Give your home address and state:

‘I and my family would like to volunteer to be part of a pilot study to look at the impact of ME/CFS on quality of life for both the patient and their families’.

University of Cardiff, School of Medicine
UHW Main Building, Heath Park
Cardiff       CF14 4XN

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The role of mitochondria in ME/CFS: a perspective

Posted on 02/28/2019 by wames

The role of mitochondria in ME/CFS: a perspective, by Cara Tomas, Joanna L Elson in Fatigue: Biomedicine, Health & Behavior, 26 Feb 2019

 

Research review abstract:

Chronic fatigue syndrome (CFS) also known as Myalgic encephalomyelitis (ME) is a debilitating disease, characterized by the symptom of severe fatigue. ME/CFS is a heterogeneous condition in both clinical presentation and disease duration. A diagnosis of ME/CFS is based on the exclusion of other diseases due to a current lack of known biomarkers for the disease. Patients may be split into categories based on the severity of their illness – mild, moderate and severe.

Here we consider some of the recent advances in the understanding of mitochondrial dysfunction and mitochondrial DNA (mtDNA) variation that may have relevance to ME/CFS. Thus far, we have shown that ME/CFS patients do not harbor proven mtDNA mutations, another exclusion, albeit an important one. As such this group of patients do not fall within the category of patients with mitochondrial disorder.

If ME/CFS patients have some form of mitochondrial dysfunction, the form and cause of this dysfunction is a matter of debate. The current data underlines the need to move from small studies to larger endeavors applying multiple methods to well-defined cohorts with samples taken longitudinally.

Read the full article

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UK parliament Q&A: CFS Research

Posted on 02/25/2019 by wames

UK House of Commons Written Questions and Answers: Chronic Fatigue Syndrome: research: Written question – 221619, & 221620. 22 February 2019.

 

Question 1: Asked by Sharon Hodgson (MP Washington & Sunderland) 14 February 2019

To ask the Secretary of State for Business, Energy and Industrial Strategy, how many grant applications have been made to the Medical Research Council for ME/CFS related research since 2010; how many of those applications have been awarded funding; and if he will make a statement.

Answered by Chris Skidmore (Parliamentary Under-Secretary, Department of Health and Social Care), 22 Feb 2019

Since 2009/10, the Medical Research Council (MRC) has received 32 research proposals relating to Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME), seven of which have been funded.

The MRC supports research in response to proposals from the research community. High quality applications on any aspect of human health are always welcomed and awards are made according to their scientific quality and importance to human health.

Question 2: Asked by Sharon Hodgson (MP Washington & Sunderland) 14 February 2019

To ask the Secretary of State for Health and Social Care, how much funding his Department has allocated to ME/CFS for (a) biopsychological and (b) biopsychosocial research in each year since 2010; and if he will make a statement. [221620]

Answered by Caroline Dineage (Minister of State, Department of Health and Social Care), 22 Feb 2019

We do not hold the information requested on funding for myalgic encephalitis/chronic fatigue syndrome (ME/CFS) research according to biopsychological, biopsychosocial and biomedical research.

The following table shows information provided by the National Institute for Health Research (NIHR) on Departmental programme research funding for ME/CFS, per year, since financial year 2010-11. Further information on this research is available through the NIHR Journals Library at the following link: https://www.journalslibrary.nihr.ac.uk/programmes/

———————–
Financial Year Pounds
———————–
2010-11  189,438
2011-12  381,874
2012-13  501,461
2013-14  561,950
2014-15  426,055
2015-16  475,676
2016-17  554,785
2017-18  464,902
———————–

The NIHR welcomes funding applications for research into any aspect of human health, including ME/CFS; it is not usual practice to ring-fence funds for particular topics or conditions. Applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality.

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Are surgeons missing the major differential diagnosis that is more common than multiple sclerosis & HIV combined?

Posted on 02/25/2019 by wames

Are surgeons missing the major differential diagnosis that is more common than multiple sclerosis and HIV combined?, by Nina Muirhead in Royal College of Surgeons blog, 21 Feb 2019

 

It’s a great feeling when we meet a new outpatient that we know how to manage surgically. Unfortunately, every surgical specialty experiences a subgroup of patients who present with symptoms that cannot be resolved by surgery. These symptoms may span immune, neurological and vascular systems within the body or brain and may manifest themselves in various ways in several organs at the same time. (See list of symptoms below)

Often these patients have been back-and-forth to the GP or passed on by other medical and surgical specialties. They tend to be the cases that are difficult to diagnose, quantify, understand and detect with routine investigations.

My story

In September 2016, I became ill with acute Epstein Barr Virus Glandular Fever. I continued working, exercising and trying to lead a normal family and social life. I developed all the symptoms listed below, as well as post-exertional malaise (PEM). Every time I tried to do anything challenging (mentally, physically or emotionally) I would experience severe symptom exacerbation and flu-like sore throats with head and neck pain. I couldn’t work, read or watch TV. I couldn’t look after myself, let alone my children, and could barely walk and digest food. Eventually I was diagnosed with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS).

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Often triggered by a viral infection, ME/CFS, can be distinguished from medical and psychiatric conditions by the presence of debilitating fatigue for more than six months and/or combinations of cognitive dysfunction, total body pain, unrefreshing sleep that does not restore normal function and PEM.

I was never taught about ME/CFS at medical school and it certainly wasn’t in the MRCS examinations that I passed a decade ago. I had a vague notion that it was an illness related to deconditioning, but I was wrong. ME/CFS is a serious neurological condition which can be fatal.

Given that my own prior understanding of ME/CFS was so misguided, I was not surprised to read in the BMJ that 90% of cases of ME/CFS are thought to go undiagnosed, suggesting that people with ME/CFS are substantially undercounted, underdiagnosed and undertreated. In another study, 41.9% of ME/CFS patients were told by emergency department staff that it was all in their heads. Biobank data suggests ME/CFS is a heritable condition estimated to affect over 286,000 people in the UK; this is more common than multiple sclerosis and HIV combined, and many patients are waiting years for a diagnosis.

Read the full article

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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 

 

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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.

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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.

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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.

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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.

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