Understanding the role of the GP in caring for patients with ME/CFS – volunteers needed

Posted on 03/12/2019 by wames

Understanding the role of the GP in caring for patients with ME/CFS – volunteers needed

 

Telephone interviews

A 3rd year medical student at Cardiff University would like to interview 10-20 people about their experience with ME/CFS, either as a patient or close relative/ carer.

The interviews will be semi-structured, and participants will be free to guide the conversation as much as they wish, however there will be some key themes the researcher will ask about. These include:

  • diagnosis
  • current management plan
  • the role of the GP
  • support services accessed
  • where things could be improved.

Phone calls will be audio recorded and last no longer than 2 hours, though participants may request to complete in more than one session and can withdraw at any time without giving a reason.

 

Full project title

Understanding the role of the General Practitioner in caring for patients with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome in the community.

 

Aims of the project:

  • identify factors that patients view as important to their management in primary care
  • look at the current training and support for GPs regarding ME/CFS
  • evaluate how this requires improvement
  •  make suggestions for future changes or adaptations.

 

Confidentiality

All recordings will be kept for the six week duration of the research study before being destroyed. All information taken from the interviews will be anonymised including names of healthcare professionals mentioned in your interviews. Files will be stored securely.

 

Do you want to take part?

Email research supervisor Dr Nina Muirhead with your home address and telephone number   nina.muirhead@nhs.net

You will then be contacted by the research student and a date for the interview will be arranged between 18th and 28th March.

The student’s research report may also be taken to medical conferences or published. You will not be identified in any report or publication and will be able to obtain a copy of the published results by contacting the researcher.

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

 

 

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Mitochondrial complex activity in permeabilised cells of CFS patients using two cell types

Posted on 03/11/2019 by wames

Mitochondrial complex activity in permeabilised cells of CFS patients using two cell types, by Cara Tomas, Audrey E Brown, Julia L Newton and Joanna L Elson in Peer Journal, 1 Mar 2019

 

Article abstract:

Abnormalities in mitochondrial function have previously been shown in chronic fatigue syndrome (CFS) patients, implying that mitochondrial dysfunction may contribute to the pathogenesis of disease.

This study builds on previous work showing that mitochondrial respiratory parameters are impaired in whole cells from CFS patients by investigating the activity of individual mitochondrial respiratory chain complexes.

Two different cell types were used in these studies in order to assess individual complex activity locally in the skeletal muscle (myotubes) (n = 6) and systemically (peripheral blood mononuclear cells (PBMCs)) (control n = 6; CFS n = 13). Complex I, II and IV activity and respiratory activitysupported by fatty acid oxidation and glutaminolysis were measured usingextracellular flux analysis. Cells were permeabilised and combinations of substrates and inhibitors were added throughout the assays to allow states of mitochondrial respiration to be calculated and the activity of specific aspects of respiratory activity to be measured.

Results showed there to be no significant differences in individual mitochondrial complex activity or respiratory activity supported by fatty acid oxidation or glutaminolysis between healthy control and CFS cohorts in either skeletal muscle (p ≥ 0.190) or PBMCs (p ≥ 0.065).

This is the first study to use extracellular flux analysis to investigate individual mitochondrial complex activity in permeabilised cells in the context of CFS. The lack of difference in complex activity in CFS PBMCs suggests that the previously observed mitochondrial dysfunction in whole PBMCs is due to causes upstream of the mitochondrial respiratory chain.

Dr Cara Tomas explains the results from a new study on energy production and mitochondria

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ME/CFS & Fibromyalgia: definitions, similarities, & differences

Posted on 03/07/2019 by wames

ME/CFS and Fibromyalgia: definitions, similarities, and differences, by Benjamin H Natelson in Clinical Therapeutics 2019

Article abstract:

This commentary presents a simplified way of making the diagnosis of myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) using the 1994 Centers for Disease Control and Prevention case definition.

The format used can easily be modified for other case definitions. The commentary then discusses whether ME/CFS is the same or a different illness from fibromyalgia. Because overlap exists between the 2 syndromes, some investigators have posited that they are variants of the same illness. I have viewed this as an empirically testable hypothesis and have summoned considerable amounts of data that suggest that the 2 illnesses differ.

Were differences to exist, that would suggest different pathophysiologic processes for each, leading to different treatments.

Read full article

 

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Epidemiology of paediatric CFS in Australia

Posted on 03/06/2019 by wames

Epidemiology of paediatric chronic fatigue syndrome in Australia, by Sarah Knight,
Shane Elders, Jill Rodda, Adrienne Harvey, Lionel Lubitz, Kathy Rowe, Colette Reveley, Sabine Hennel, Susan Towns, Kasia Kozlowska, Donald N Payne, Sonya Marshall-Gradisnik, Adam Scheinberg in Archives of Disease in Childhood [Published Online: 23 February 2019]

 

Research abstract:

Objective:

To estimate the paediatrician-diagnosed incidence of chronic fatigue syndrome (CFS) in Australia, and describe demographic and clinical features, as well as approaches to diagnosis and management.

Methods:

The Australian Paediatric Surveillance Unit facilitates monthly national surveillance of uncommon conditions seen by paediatricians. Data from young people aged <18 years diagnosed with CFS were collected. Incidence was estimated based on new cases reported from April 2015 to April 2016.

Results:

A total of 164 cases of newly diagnosed CFS in young people aged 4–17 years were identified for inclusion. The estimated national incidence for children aged 4–9 years was 0.25 per 100 000 per annum. In children aged 10–17 years, the estimated incidence of paediatrician-diagnosed cases for Victoria (17.48 per 100 000) was substantially greater than other Australian states (range 1.31–5.51 per 100 000). Most cases were female and Caucasian, most commonly presenting after an infectious illness with symptoms gradual in onset. The majority were diagnosed at least 13 months after symptom onset. Symptoms, associations, investigations and management strategies were highly variable.

Conclusions:

Current findings suggest that, consistent with other countries, the Australian incidence of CFS in children aged <10 years is very low. In contrast, the national incidence of CFS in older children and adolescents (aged 10–17 years) is more unclear, with marked variability between geographical regions apparent. This may be due to variation in service accessibility and clinician understanding of CFS. Accordingly, national initiatives to improve equity of care for children with CFS may be required.

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MtDNA population variation in ME/CFS in two populations

Posted on 03/05/2019 by wames

MtDNA population variation in Myalgic encephalomyelitis/ Chronic fatigue syndrome in two populations: a study of mildly deleterious variants, by Marianne Venter, Cara Tomas, Ilse S Pienaar, Victoria Strassheim, Elardus Erasmus, Wan-Fai Ng, Neil Howell, Julia L Newton, Francois H Van der Westhuizen, Joanna L Elson in Scientific Reports 2019; 9: 2914 [Published online Feb 27 2019]

 

Research abstract:

Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS) is a debilitating condition. There is growing interest in a possible etiologic or pathogenic role of mitochondrial dysfunction and mitochondrial DNA (mtDNA) variation in ME/CFS.

Supporting such a link, fatigue is common and often severe in patients with mitochondrial
disease. We investigate the role of mtDNA variation in ME/CFS. No proven pathogenic mtDNA mutations were found. We then investigated population variation. Two cohorts were analysed, one from the UK (n = 89 moderately affected; 29 severely affected) and the other from South Africa (n = 143 moderately affected).

For both cohorts, ME/CFS patients had an excess of individuals without a mildly deleterious population variant. The differences in population variation might reflect a mechanism important to the pathophysiology of ME/CFS.

In conclusion, this is the first paper to demonstrate mitochondrial genetic differences between ME/CFS patients and controls. It also demonstrates the power of mtDNA analysis focused on variants likely to be of a functional effect to detect differences between case and control cohorts where the traditional haplogroup association method frequently fails to do so.

Future studies need to include larger cohorts from multiple centres, within and between nations, with standardized sample handling. These studies need to take a multi-disciplinary approach linking genetics, including mtDNA copy number analysis and bioenergetics. Given the changing nature of the disease, longitudinal studies would seem to be essential to further understanding by allowing us to determine how mtDNA varation and mitochondrial dysfunction relates to fluctuations in symptom severity.

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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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