DOCSLIB.ORG

Read the Full Survey Report

Total Page：16

File Type：pdf, Size：1020Kb

Download full-text PDF Read full-text
Read the Full Survey Report Evaluating a Proposed Name to Replace ‘ME/CFS’: A Community Survey Project Conducted by Lisa Petrison, Ph.D. Published by Paradigm Change (March 2015) Copyright 2015 www.paradigmchange.me 2 Table of Contents Executive Summary ...................................................................................................................................... 5 Part 1 – Results Overview .......................................................................................................................... 13 Part 2 - Implications ................................................................................................................................... 29 Part 3 – Survey Questions .......................................................................................................................... 49 Part 4 – Main Survey Results ..................................................................................................................... 66 Part 5 – ME vs. Non-ME Results ............................................................................................................... 110 Part 6 – US ME vs. Non-ME Results ......................................................................................................... 127 Part 7 – Related Illnesses Results ............................................................................................................ 161 Part 8 – US vs. Non-US Results ................................................................................................................. 181 Part 9 – Clinician Results .......................................................................................................................... 191 Part 10 – Version 1 vs. Version 2 Results................................................................................................. 204 Part 11 – Whole Survey Results ............................................................................................................... 210 Part 12 – Positive SEID Comments ........................................................................................................... 221 Part 13 – Negative SEID Comments ......................................................................................................... 237 Part 14 – More SEID Comments ............................................................................................................... 322 Part 15 – ME Comments ........................................................................................................................... 331 Part 16 – More ME Comments ................................................................................................................. 366 Part 17 – Change Decision Comments ..................................................................................................... 389 Part 18 – Setting Priorities Comments .................................................................................................... 412 Part 19 – Name Choice Comments .......................................................................................................... 429 Part 20 – More Naming Comments ......................................................................................................... 464 Part 21 – IOM Report Comments ............................................................................................................ 473 Part 22 – Additional Comments ............................................................................................................... 493 Part 23 – Community Voices .................................................................................................................... 507 Part 24 – Other Name Surveys ................................................................................................................. 517 Part 25 – Medscape Clinicians’ Comments .............................................................................................. 520 Part 26 – About the Researcher ............................................................................................................... 526 3 Executive Summary Executive Summary Introduction This survey obtained the opinions of patients, advocates and other stakeholders about the idea of using the term systemic exertion intolerance disease (SEID) as a replacement for the name myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), as was recently proposed by an Institute of Medicine (IOM) panel report. The survey also gathered opinions about the naming process and about participants’ preferred names for the disease. The survey was presented to the community by the organizations ME Advocacy and Paradigm Change. Data was collected from February 21 to March 1, 2015. Part 1 of this report summarizes the survey results in text form, and Part 2 provides an analytical discussion of the implications of the results. Subsequent sections of the report present the findings in detail with graphics. Following is a brief summary of some of the most important findings. Main Results A total of 1004 people participated in the main survey. 5 Executive Summary It was promoted by sharing information on forums, blogs and email newsletters directed at people with ME, ME/CFS, CFS and CEBV. About 89% of the respondents to the main survey reported being patients with ME, ME/CFS, CFS, or a combination of these. About 17% described themselves as advocates. About 39% of the respondents to the main survey were from the U.S. The rest were from other countries, including the UK (18%), Belgium (14%), Canada (9%), Australia (6%), Netherlands (6%) and many others. About 62% of the participants in the main survey said the proposed name was pretty bad or very bad. About 18% said that the proposed name was pretty good or very good. About 70% of the participants agreed that the naming process had failed to result in a legitimate name. About 15% of the participants disagreed that the naming process had failed to result in a legitimate name. About half of the respondents agreed that they were angry about the naming process. About 18% of the respondents disagreed that they were angry. About three-fourths of the respondents said that it would be somewhat unacceptable or totally unacceptable for the government to start using the name SEID without further public dialogue on the topic. About 20% of the respondents said that it would be somewhat acceptable or totally acceptable. About half of the respondents who were asked the question said that the proposed name was better than chronic fatigue syndrome (CFS). About 20% said the proposed name was better than myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS). Additional questions were asked on specific positive and negative aspects of the name, on whether participants had had sufficient opportunities to provide input on what the name should be, and on other topics. See Part 4 of this report for an in-depth presentation of responses to all questions in the main survey, including graphic charts. 6 Executive Summary Name Preferences Participants were asked what they would like for the disease to be called and allowed to supply up to three choices. The question asked respondents to assume that an acceptable definition would be adopted to go along with the name. It also promised that the results would not be used to select a name, but rather just to get a sense of how people were thinking. At least when the question was asked this way, Myalgic Encephalomyelitis (ME) was by far the favorite name. It received almost as many first-choice mentions as all the other names combined, and well over twice as many total mentions as any other name. Runner-up names were Neuro Endocrine Immune Disease (NEID) and Ramsay’s Disease. The name proposed by the IOM committee, Systemic Exertion Intolerance Disease (SEID), received about one-tenth as many first-choice mentions as did ME, and about one-fifth as many total mentions. The ME variant Myalgic Encephalopathy received about as many mentions as SEID did. ME/CFS was the sixth most popular name, and other name possibilities were mentioned as well. 7 Executive Summary The discussion of Implications in Part 2 of this report focuses largely on what the survey findings suggest about issues that likely would be relevant to the attempted adoption of each of these names. The full breakdown of name mentions is included in Part 4. ME, ME/CFS and CFS Patients An important finding of the research project was that patients who stated that they had ME tended to express particular attitudes relevant to the name. These individuals were more negative about the proposed name as well as about the naming process than were patients who said that they had just ME/CFS or CFS. People who said they had ME were especially likely to express specific concerns about the proposed name, including the belief that it would not meet the needs of severe patients. The differences between ME and non-ME patients were particularly substantial among those who said they are citizens of the U.S. 8 Executive Summary U.S. patients who said that they had ME but not ME/CFS or CFS expressed the most negative attitudes of all groups with regard to both the proposed name and the naming process. Complete survey results on this topic, including graphic charts, are in Parts 5 and 6 of this report. Citizenship Participants from other countries and ones from the U.S. looked similar in their responses to all the questions. The main difference was that people from other countries
Load more

Recommended publications
  • Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness
    This PDF is available from The National Academies Press at http://www.nap.edu/catalog.php?record_id=19012 Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness ISBN Committee on the Diagnostic Criteria for Myalgic 978-0-309-31689-7 Encephalomyelitis/Chronic Fatigue Syndrome; Board on the Health of Select Populations; Institute of Medicine 330 pages 6 x 9 PAPERBACK (2015) Visit the National Academies Press online and register for... Instant access to free PDF downloads of titles from the NATIONAL ACADEMY OF SCIENCES NATIONAL ACADEMY OF ENGINEERING INSTITUTE OF MEDICINE NATIONAL RESEARCH COUNCIL 10% off print titles Custom notification of new releases in your field of interest Special offers and discounts Distribution, posting, or copying of this PDF is strictly prohibited without written permission of the National Academies Press. Unless otherwise indicated, all materials in this PDF are copyrighted by the National Academy of Sciences. Request reprint permission for this book Copyright © National Academy of Sciences. All rights reserved. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness Beyond Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome Redefining an Illness Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Board on the Health of Select Populations PREPUBLICATION COPY—Uncorrected Proofs Copyright © National Academy of Sciences. All rights reserved. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001 NOTICE: The project that is the subject of this report was approved by the Govern- ing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineer- ing, and the Institute of Medicine.
    [Show full text]
  • Association Between Maternal Use of Folic Acid Supplements and Risk of Autism Spectrum Disorders in Children
    ORIGINAL CONTRIBUTION Association Between Maternal Use of Folic Acid Supplements and Risk of Autism Spectrum Disorders in Children ˚ ´ Pal Suren, MD, MPH Importance Prenatal folic acid supplements reduce the risk of neural tube defects Christine Roth, MSc in children, but it has not been determined whether they protect against other neu- Michaeline Bresnahan, PhD rodevelopmental disorders. Margaretha Haugen, PhD Objective To examine the association between maternal use of prenatal folic acid supplements and subsequent risk of autism spectrum disorders (ASDs) (autistic disor- Mady Hornig, MD der, Asperger syndrome, pervasive developmental disorder–not otherwise specified Deborah Hirtz, MD [PDD-NOS]) in children. Kari Kveim Lie, MD Design, Setting, and Patients The study sample of 85 176 children was derived from the population-based, prospective Norwegian Mother and Child Cohort Study W. Ian Lipkin, MD (MoBa). The children were born in 2002-2008; by the end of follow-up on March 31, Per Magnus, MD, PhD 2012, the age range was 3.3 through 10.2 years (mean, 6.4 years). The exposure of Ted Reichborn-Kjennerud, MD, PhD primary interest was use of folic acid from 4 weeks before to 8 weeks after the start of pregnancy, defined as the first day of the last menstrual period before conception. Synnve Schjølberg, MSc Relative risks of ASDs were estimated by odds ratios (ORs) with 95% CIs in a logistic George Davey Smith, MD, DSc regression analysis. Analyses were adjusted for maternal education level, year of birth, and parity. Anne-Siri Øyen, PhD Main Outcome Measure Specialist-confirmed diagnosis of ASDs. Ezra Susser, MD, DrPH Results At the end of follow-up, 270 children in the study sample had been diag- Camilla Stoltenberg, MD, PhD nosed with ASDs: 114 with autistic disorder, 56 with Asperger syndrome, and 100 with PDD-NOS.
    [Show full text]
  • Lower Autism Risk with Folic Acid Supplements in Pregnancy 12 February 2013
    Lower autism risk with folic acid supplements in pregnancy 12 February 2013 Women who took folic acid supplements in early of folic acid supplements in the mother during pregnancy almost halved the risk of having a child pregnancy and a reduced risk of childhood autism. with autism. Beginning to take folic acid supplements later in pregnancy did not reduce the "The study does not prove that folic acid risk. This is shown in new findings from the ABC supplements can prevent childhood autism. Study and Norwegian Mother and Child Cohort However, the findings are so apparent that they Study published in the Journal of The American constitute a good argument to further examine Medical Association (JAMA). possible causal mechanisms. It should also be ascertained whether folic acid is associated with a Women who took folic acid supplements from four reduced risk of other brain disorders in children," weeks before conception to eight weeks into says Surén. pregnancy had a 40 per cent lower risk of giving birth to children with childhood autism (classic Emphasises the importance of folic acid autism). Use of folic acid supplements midway supplements through pregnancy (week 22) had no effect. The results support the Norwegian Directorate of The findings only apply to a lower risk of childhood Health's recommendations for folic acid autism, the most severe form of autism. The supplements during pregnancy and emphasise the results show no reduction in the risk of atypical or importance of starting early—preferably before unspecific autism. The study also investigated the conception. prevalence of Asperger syndrome, but the number of examined children was too low to give a reliable Method result.
    [Show full text]
  • Sensationalism Versus Science?
    Sensationalism versus Science? Malcolm Hooper and Margaret Williams 5th May 2013 The long-promised article by Michael Hanlon on the “war” surrounding the neuroimmune disorder myalgic encephalomyelitis (ME) was published today in the Sunday Times Magazine together with a photograph of Professor Sir Simon Wessely (“This man faced death threats and abuse. His crime? He suggested that ME was a mental illness”). Whilst the article focuses on the unacceptable actions of very few alleged sufferers and not on legitimate challenges mounted by scientists, it may be of interest to reproduce the questions which Hanlon sent to Professor Malcolm Hooper on 31st January and also Professor Hooper’s reply, since that reply provides the backdrop to the on-going “war”. First, though, it must be said that much of Hanlon’s article is factually wrong. For example, Hanlon begins his article with the assertion that “Professor Sir Simon Wessely lives on the front line of science”,which immediately reveals a lack of understanding in that Sir Simon does not live on the front line of biomedical science but on the front line of psychiatry, a discipline with no biomarkers of disease. Indeed Sir Simon ignores, actively denies or dismisses the evidence of biomedical scientists that demonstrates whole-body inflammation in ME and does not accept that it has now been shown to be an autoimmune disease. Hanlon goes on to state that Sir Simon “has done a lot of work for the military, helping to treat traumatised war veterans”, when there is irrefutable published evidence that Sir Simon has for decades denied the very existence of Gulf War Syndrome.
    [Show full text]
  • New ME Briefing 21 J
    1 Briefing for ‘Myalgic Encephalomyelitis: Treatment st and Research’ Westminster Hall, 21 ​ June 2018 ​ Contents About ME 3 ​ The Debate 3 Education of health professionals 4 Review of the NICE guideline on ME/CFS 5 NHS services 6 Children and young people with ME 7 Severe ME 7 Biomedical research 8 PACE trial 10 ME and welfare benefits 10 Social Care 11 References 13 Contact details 15 Appendix: The PACE Trial Controversy 16 This briefing has been produced jointly by #MEAction, Action for M.E., ME ​ ​ ​ ​ ​ Association and the ME Trust (for contact details, see page 15) ​ ​ ​ ​ ​ Supported by: Blue Ribbon for Awareness of ME, Centre for Welfare Reform, ​ ​ ​ ​ ​ Forward-ME, ME Research UK, WAMES ​ ​ ​ ​ 2 A bout ME Myalgic Encephalomyelitis (ME) is a chronic, fluctuating, neurological condition that causes symptoms affecting many body systems, more commonly the nervous and immune systems. ME affects an estimated 250,000 adults and children in the UK, and around 17 million people worldwide. People with ME experience severe, persistent fatigue associated with post-exertional malaise (PEM), their systems’ inability to recover after expending even small amounts of energy, leading to a flare-up in symptoms. PEM means that simple mental or physical activities can leave people with ​ ​ ME debilitated, experiencing a range of symptoms that are not significantly relieved by resting. PEM is the hallmark symptom of ME, other symptoms can include muscle and joint pain, cognitive difficulties, noise and light sensitivities and digestive problems. People with ME can vary enormously in their experience of the illness, and how their symptoms fluctuate. An estimated one in four children and adults with ME experience these symptoms severely (see ‘Severe ME’ on page 7).
    [Show full text]
  • Chronic Fatigue Syndrome/Myalgic
    # 13 – October 2015 1. Colofon / Personalia Scientific reviews: Richard Podell Advisory board: Leonard A. Jason Cartoons: Djanko Editor/Editorial team: David Egan, Eddy Keuninckx, Rob Wijbenga Textual contributions for the December-issue: Prof. Alan Light John Allsop Annet Lindhout Prof. Leonard Jason Bente Stenfalk Lieke Kops Brenda Vreeswijk Lisa Forstenius Dr. Byron Hyde Maartje Slot Carin Widholm Merry S. CJ Arlotta Michael Evison David Egan Dr. Neil Abbott Eddy Keuninckx P.E. Griffith Erica Verrillo Rebecca Hansen Faith Wong Dr. Richard Podell Greg & Linda Crowhurst Rob Wijbenga Helle Rasmussen Rosemary Underhill Jeannette Burmeister Ryan Prior Jerrold Spinhirne Sally K. Burch Jeryldine Saville Scott Jordan Harris Jo Best Staffan Christensen Joan McParland Distribution: Eddy Keuninckx Layout: Eddy Keuninckx Archive: http://let-me.be (here you can download all magazines for free) Facebook: https://www.facebook.com/groups/TheMEGlobalChronicle/ The editorial team doesn't accept any responsibility for any possible incorrect information that it has been supplied with and which has been published in this monthly issue. Anyone can subscribe to this free magazine by sending their email address to: [email protected] You can un-subscribe by sending a mail to: [email protected] Textual contributions for the October issue need to be supplied in Word by 10st December and sent to: [email protected] The next issue will come out on December 20nd,2015. Subscribe to this newsletter We are no association or society, just a bunch of idealists who want to give our best efforts towards recognition of this terrible disease. By trying to help connecting to each other all patients all over the world.
    [Show full text]
  • Environmental Health Issue
    FIFTH EDITION 2006, Volume 45 R5 Environmental Health and Autism In thIs Issue: Time To GeT a Grip By martha r. Herbert, m.D., ph.D. Beyond Behavior—Biomedical Diagnoses in Autism spectrum Disorders By Margaret L. Bauman, M.D. transforming the Public Debate on neurotoxicants By Elise Miller, M.Ed. ADVERTISEMENT ADVERTISEMENT Autism does not have to be a life sentence You’re not about to give up on your child. Neither Are We. Since , the Autism Treatment Center of America™ has provided innovative training programs for parents and professionals caringifor children challenged by Autism Spectrum Disorders and related developmental difficulties. • Practical Tools • Powerful Results • Limitless Hope c Help your child improve in all areas of over p learning, development, communication and hoto skill acquisition. : © W I Join us for our internationally-acclaimed ll T ERR Son-Rise Program® Start-Up, a y comprehensive weeklong training program for parents and professionals. We don’t put limits on the possibilities for your child. Free 25-Minute Initial Call 877-766-7473 We’ll give you the keys to unlock their world. HOME OF THE SON-RISE PROGRAM® SINCE 1983 South Undermountain Road Sheffield, MA - USA Telephone: -- • E-mail: [email protected] www.autismtreatment.com Copyright © 2006 by The Option Institute & Fellowship. All rights reserved. 02.06-6 CONTENTS December 2006 page 18 SpOTlIGHT Time to Get A Grip By marTHa r. HerBerT, m.D., pH.D. Does an environmental role in autism make sense? How do we decide? And if environment is involved in autism, what do we do about it? These are challenging questions.
    [Show full text]
  • Sensitivity and Specificity of Early Screening for Autism
    BJPsych Open (2019) 5, e41, 1–8. doi: 10.1192/bjo.2019.34 Sensitivity and specificity of early screening for autism Pål Surén, Alexandra Saasen-Havdahl, Michaeline Bresnahan, Deborah Hirtz, Mady Hornig, Catherine Lord, Ted Reichborn-Kjennerud, Synnve Schjølberg, Anne-Siri Øyen, Per Magnus, Ezra Susser, W. Ian Lipkin and Camilla Stoltenberg Background (95% CI 58–79) for ASD without phrase speech and 34% (95% CI – Early identification and diagnosis is beneficial for children with 29 40) for ASD with phrase speech. Specificity was then reduced – autism spectrum disorder (ASD). Universal early screening is to 89% (95% CI 89 90). recommended by many experts, but disputed because evidence is limited, and sensitivity and specificity in general populations Conclusions are largely unknown. Early ASD screening with a parent checklist had low sensitivity. It identified mainly individuals with ASD with significant develop- Aims mental delay and captured very few children with ASD with To estimate the sensitivity and specificity of early population- cognitive skills in the normal range. Increasing sensitivity was not based screening for ASDs. possible without severely compromising specificity. Method Declaration of interest The study was based on the Norwegian Mother and Child Cohort C.L. receives royalty for the Social Communication Study. The 36-month cohort questionnaire included the Social Questionnaire, which she has co-authored. Communication Questionnaire (SCQ), a 40-item screening instrument for ASD. Keywords Results Autistic spectrum disorders; developmental disorders; A total of 58 520 mothers (58%) responded to the questionnaire. epidemiology. By the end of follow-up on 31 December 2015, 385 (0.7%) indi- viduals with ASD had been identified among the responders’ Copyright and usage children.
    [Show full text]
  • Straight-Jacketed by Empty Air
    Straight-jacketed by empty air Psychiatry’s long and shameful involvement in Myalgic Encephalomyelitis St Straight-jacketed by empty air Greg Crowhurst Please note that the publisher and the author cannot be held accountable for any damages or actions arising from reading this book, which is presented for informational purposes only. It is not intended as a substitute for professional medical advice. The views of contributors are not necessarily those of the publisher or author, under no circumstances can they be held accountable for any loss or claim arising out of the opinions expressed or suggestions made. “There is no doubt that ME is an organic disorder. The sufferers are denied proper recognition, misdiagnosed, vilified, ridiculed and driven to great depths of despair.” Hansard (House of Commons) 23rd February 188/columns 167-168 Books by Greg Crowhurst : Kevin Mayhew : St Pauls : Holy Way , Stonebird S Stonebird Holy Way Dedication I dedicate this, with all the love in my heart to my wife Linda, whose agony is beyond imagination or comprehension. All I have to help are these arms to reach out, hold and comfort, but that is more and more unbearable for her to cope with, so severe is her torture. Acknowledgements: Many, many thanks for all the support and enthusiasm for this book, it spurred me on! Special thanks to Rachel Higginson, Susanna Agardy, Geoffrey Keith Brown, Sally K Burch, Colleen Steckel, Nancy Blake, Corina Duyn, Clare Norton, Naomi Whittingham and Theresa Brennan. “I must emphasise that the most important message
    [Show full text]
  • Prenatal Exposure to Antipsychotic Medication Does Not Increase Odds of Autism, ADHD
    Spectrum | Autism Research News https://www.spectrumnews.org NEWS Prenatal exposure to antipsychotic medication does not increase odds of autism, ADHD BY PETER HESS 20 AUGUST 2021 Listen to this story: Children born to mothers who take antipsychotic medications during pregnancy do not have elevated odds of autism or attention deficit hyperactivity disorder (ADHD), nor are they more likely to be born preterm or underweight, according to a study released this past Monday in JAMA Internal Medicine. Some women with schizophrenia, Tourette syndrome or bipolar disorder take antipsychotic drugs, such as aripiprazole, haloperidol or risperidone. Clinicians have long debated whether women should discontinue these medications during pregnancy out of concern for the drugs’ effects on the developing fetus. But children born to mothers who take antipsychotics during pregnancy and to those who do not take them have similar outcomes, the new work shows. “Our findings do not support a recommendation for women to discontinue their regular antipsychotic treatment during pregnancy,” says senior investigator Kenneth Man, research fellow at the University College London School of Pharmacy in the United Kingdom. Prescribing antipsychotics during pregnancy can help prevent potentially dangerous psychotic episodes and ensure that an expectant mother can take care of herself, says Mady Hornig, associate professor of epidemiology at Columbia University, who was not involved in the study. “We certainly don’t want to be cavalier about the use of any medication during pregnancy, but one 1 / 2 Spectrum | Autism Research News https://www.spectrumnews.org also wants to balance out the implications of not treating.” Any apparent effects of antipsychotics on a developing fetus are likely due to the condition being treated, rather than the treatment, the study shows.
    [Show full text]
  • Absence of Evidence for Bornavirus Infection in Schizophrenia, Bipolar
    Molecular Psychiatry (2012) 17, 486–493 & 2012 Macmillan Publishers Limited All rights reserved 1359-4184/12 www.nature.com/mp ORIGINAL ARTICLE Absence of evidence for bornavirus infection in schizophrenia, bipolar disorder and major depressive disorder M Hornig1,2, T Briese1,2, J Licinio3, RF Khabbaz4, LL Altshuler5, SG Potkin6, M Schwemmle7, U Siemetzki1, J Mintz5, K Honkavuori1, HC Kraemer8, MF Egan9, PC Whybrow5, WE Bunney6 and WI Lipkin1,2 1Center for Infection and Immunity, Columbia University Mailman School of Public Health, New York, NY, USA; 2Department of Epidemiology, Columbia University Mailman School of Public Health, New York, NY, USA; 3John Curtin School of Medical Research, The Australian National University, Canberra, ACT, Australia; 4Centers for Disease Control and Prevention, Atlanta, GA, USA; 5Department of Psychiatry and Biobehavioral Sciences, University of California Los Angeles, Los Angeles, CA, USA; 6University of California Irvine, Irvine, CA, USA; 7Department of Virology, Universita¨tsklinikum, Freiburg, Germany; 8Department of Psychiatry and Behavioral Sciences, Stanford University, Palo Alto, CA, USA and 9Clinical Neuroscience, Merck & Company, North Wales, PA, USA In 1983, reports of antibodies in subjects with major depressive disorder (MDD) to an as-yet uncharacterized infectious agent associated with meningoencephalitis in horses and sheep led to molecular cloning of the genome of a novel, negative-stranded neurotropic virus, Borna disease virus (BDV). This advance has enabled the development of new diagnostic assays, including in situ hybridization, PCR and serology based on recombinant proteins. Since these assays were first implemented in 1990, more than 80 studies have reported an association between BDV and a wide range of human illnesses that include MDD, bipolar disorder (BD), schizophrenia (SZ), anxiety disorder, chronic fatigue syndrome, multiple sclerosis, amyo- trophic lateral sclerosis, dementia and glioblastoma multiforme.
    [Show full text]
  • The Biopolitics of Chronic Fatigue Syndrome
    The Biopolitics of Chronic Fatigue Syndrome Thesis submitted for the degree of Doctor of Philosophy at the University of Leicester by Nikos Karfakis School of Management University of Leicester March 2013 Abstract The Biopolitics of Chronic Fatigue Syndrome by Nikos Karfakis This thesis approaches Chronic Fatigue Syndrome (CFS) as a biopolitical problem, that is as a shifting scientific object which needs to be studied, classified and regulated. Assemblages of authorities, knowledges, and techniques make CFS subjects and shape their everyday conduct in an attempt to increase their supposed autonomy, wellbeing and health. CFS identities are, however, made not only through government, scientific and medical interventions but also by the patients themselves, a biosocial community that collaborates with scientists, educates itself about the intricacies of biomedicine, and contests psychiatric truth claims. CFS is a socio-medical disorder, an illness trapped between medicine, psychology and society, an illness that is open to debate, and therefore difficult to manage and standardise. CFS is, thus, more than a fixed and defined medical category; it is a performative and multiple category, it is a heterogeneous world. This thesis studies that performative complexity by assembling different pieces of empirical data that constitute its heterogeneity: medical and psychiatric journals and monographs, self-help books, CFS organisations’ magazines, newsletters and websites, illness narratives and social studies of CFS, CFS blogs, and qualitative interviews with diagnosed CFS patients and CFS activists. The thesis delineates different interventions by medicine, science, the state and the patients themselves and concludes that CFS remains elusive, only partially standardised, in an on- going battle between all the different actors that want to define it for their own situated interests.
    [Show full text]