The Influence of the Xenotropic Murine Leukaemia Virus-Related Virus (XMRV) Research Findings on the Thoughts and Feelings of People Living with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: An Interpretative Phenomenological Analysis

2013 ◽  
Vol 10 (4) ◽  
pp. 369-381 ◽  
Author(s):  
Megan Anne Arroll ◽  
Emily Baron
Keyword(s):  
Chronic Fatigue Syndrome ◽  
Interpretative Phenomenological Analysis ◽  
Chronic Fatigue ◽  
Phenomenological Analysis ◽  
Myalgic Encephalomyelitis ◽  
Leukaemia Virus ◽  
Murine Leukaemia Virus ◽  
Fatigue Syndrome ◽  
Related Virus ◽  
Research Findings

scholarly journals Absence of xenotropic murine leukaemia virus-related virus in UK patients with chronic fatigue syndrome

Retrovirology ◽  
2010 ◽  
Vol 7 (1) ◽  
pp. 10 ◽  
Author(s):  
Harriet CT Groom ◽  
Virginie C Boucherit ◽  
Kerry Makinson ◽  
Edward Randal ◽  
Sarah Baptista ◽  
...  
Keyword(s):  
Chronic Fatigue Syndrome ◽  
Chronic Fatigue ◽  
Leukaemia Virus ◽  
Murine Leukaemia Virus ◽  
Fatigue Syndrome ◽  
Related Virus

scholarly journals A Multicenter Blinded Analysis Indicates No Association between Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and either Xenotropic Murine Leukemia Virus-Related Virus or Polytropic Murine Leukemia Virus

mBio ◽  
2012 ◽  
Vol 3 (5) ◽  
Author(s):  
Harvey J. Alter ◽  
Judy A. Mikovits ◽  
William M. Switzer ◽  
Francis W. Ruscetti ◽  
Shyh-Ching Lo ◽  
...  
Keyword(s):  
Chronic Fatigue Syndrome ◽  
Murine Leukemia Virus ◽  
Leukemia Virus ◽  
Chronic Fatigue ◽  
Myalgic Encephalomyelitis ◽  
Xenotropic Murine Leukemia ◽  
Fatigue Syndrome ◽  
Related Virus ◽  
Murine Leukemia ◽  
Polytropic Murine Leukemia Virus

ABSTRACT The disabling disorder known as chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) has been linked in two independent studies to infection with xenotropic murine leukemia virus-related virus (XMRV) and polytropic murine leukemia virus (pMLV). Although the associations were not confirmed in subsequent studies by other investigators, patients continue to question the consensus of the scientific community in rejecting the validity of the association. Here we report blinded analysis of peripheral blood from a rigorously characterized, geographically diverse population of 147 patients with CFS/ME and 146 healthy subjects by the investigators describing the original association. This analysis reveals no evidence of either XMRV or pMLV infection. IMPORTANCE Chronic fatigue syndrome/myalgic encephalomyelitis has an estimated prevalence of 42/10,000 in the United States, with annual direct medical costs of $7 billion. Here, the original investigators who found XMRV and pMLV (polytropic murine leukemia virus) in blood of subjects with this disorder report that this association is not confirmed in a blinded analysis of samples from rigorously characterized subjects. The increasing frequency with which molecular methods are used for pathogen discovery poses new challenges to public health and support of science. It is imperative that strategies be developed to rapidly and coherently address discoveries so that they can be carried forward for translation to clinical medicine or abandoned to focus resource investment more productively. Our study provides a paradigm for pathogen dediscovery that may be helpful to others working in this field.

scholarly journals Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Major Impact on Lives of Both Patients and Family Members

Medicina ◽  
2021 ◽  
Vol 57 (1) ◽  
pp. 43
Author(s):  
Esme Brittain ◽  
Nina Muirhead ◽  
Andrew Y. Finlay ◽  
Jui Vyas
Keyword(s):  
Quality Of Life ◽  
Chronic Fatigue Syndrome ◽  
Physical Health ◽  
Family Members ◽  
Chronic Fatigue ◽  
Myalgic Encephalomyelitis ◽  
World Health ◽  
Life Questionnaire ◽  
Fatigue Syndrome

Background and objectives: To explore the impacts that Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has on the patient and their family members using the WHOQOL-BREF (Abbreviated World Health Organisation Quality of Life questionnaire) and FROM-16 (Family Reported Outcome Measure-16) quality of life assessments. Materials and Methods: A quantitative research study using postal questionnaires was conducted. A total of 39 adult volunteers expressed an interest in participating in the study: 24 returned appropriately completed questionnaires. Patients with ME/CFS completed the WHOQOL-BREF and up to four of their family members completed the FROM-16 questionnaire. Results: ME/CFS negatively affects the quality of life of the patient (median scores WHOQOL-BREF: Physical health = 19, Psychological = 44, Social relationships = 37.5, Environment = 56, n = 24) and their family members’ quality of life (FROM-16: Emotional = 9.5, Personal and social = 11.5, Overall = 20.5, n = 42). There was a significant correlation between the patient’s reported quality of life scores and their family members’ mean FROM-16 total scores. Conclusions: This study identifies the major impact that having an adult family member with ME/CFS has on the lives of partners and of other family members. Quality of life of ME/CFS patients was reduced most by physical health compared to the other domains. Quality of life of family members was particularly impacted by worry, family activities, frustration and sadness. This highlights the importance of measuring the impact on the lives of family members using tools such as the FROM-16 in the ME/CFS clinical encounter and ensuring appropriate support is widely available to family members.

Sign in / Sign up

Export Citation Format

Share Document