Thirty Years of Disdain

Total Page:16

File Type:pdf, Size:1020Kb

Thirty Years of Disdain THIRTY YEARS OF DISDAIN How HHS and A Group of Psychiatrists Buried Myalgic Encephalomyelitis Mary Dimmock Matthew Lazell-Fairman December 2015 What I would most like to see is that fatigue is not abandoned as a subject for careful consideration because of further failures of CFS case definitions or frustrations arising out of shrill pressures to justify an entity of dubious validity.1 —Stephen Straus of the U.S. National Institute of Health (~1994) Preface 3 Matthew’s Story 5 Introduction 8 Myalgic Encephalomyelitis 9 The Burial of ME and the Birth and Perpetuation of CFS 14 Emergence of the Psychogenic View 14 Emergence and Broadening of the CFS Definitions 16 Reemergence of ME and Conflation of ME and CFS 19 The Debate over PACE 20 The Current Situation with the Definitions 22 Bad Science and Questionable Medical Ethicality 26 The Impact of Bad Definitions 28 Abysmal Medical Care 30 Bad Clinical Guidelines and Medical Education 30 Additional Challenges in Clinical Care 33 Flawed Epidemiological Research 35 Lack of Research and Research Funding 39 Paltry NIH Funding 39 Bias, Misunderstanding, and Lack of Agency Interest 40 Exiled by NIH Institutes and Centers 44 Lack of a Strategy and Follow-up on Key Gaps 45 A Failure in Leadership 46 Stalled Drug Development 48 Inadequate Support Mechanisms 50 HHS’s Stakeholder Engagement And Cross-Agency Coordination 52 HHS’s Failure to Listen to the Key Stakeholders of its Action 52 Lack of Interagency Coordination and Planning 55 CFS as a Social and Political Creation 57 The Architects of the Dominant Paradigm 58 The “Enablers” 61 Changing the Dominant Paradigm 64 Advancing ME Research and Clinical Care 65 Appendices and References 67 Appendix 1: Summary of the Primary CFS, ME/CFS and ME Definitions 67 Appendix 2: Estimated Prevalence Rates across Key Definitions 68 Appendix 3: Key Resources 69 Bibliography 72 Thirty Years of Disdain: How HHS Buried M.E. December 2015. (M. Dimmock, M. Lazell-Fairman) 2 Preface In 2010, I was nearing the end of a 31-year career in the pharmaceutical industry when my son, Matthew Lazell-Fairman, suddenly fell victim to myalgic encephalomyelitis (ME), a disease that causes profound neurological, immunological and energy production dysfunction and a level of debility worse than congestive heart failure, multiple sclerosis and end-stage renal disease. Since then, I have watched, helpless and heartbroken, as this disease has ripped his life to shreds, turning the promise of a vibrant and spirited future into a soul-crushing existence, at times so unrelentingly harsh and circumscribed, so brutal, so cornered, and with so little hope that I have wondered how he has managed to keep going. Compounding the heartbreak, it has been disturbing to watch as the world around my son, including his own doctors, has not only dismissed his disease but also ridiculed him for believing that it is real and serious. Worst of all has been the realization that my son is paying this terrible price because the U.S. government has so badly mismanaged the ME crisis since before he was even born. Everything I thought I understood about disease research, drug development, and the delivery of clinical care has been turned on its head. This isn’t science or medicine as I had come to know them but rather a parade of psychogenic bias, neglect, bad science, flawed public policy, and the political agendas of powerful people and institutions that have sentenced ME patients to the medical equivalent of the most squalid slum in the poorest country on earth. The political decisions taken over the last thirty years have polluted research, perverted clinical care, and shipwrecked ME patients with a life-threatening dose of stigma, disbelief and medically induced harm. As a result of 2015 reports by the Institute of Medicine (IOM) and the National Institute of Health (NIH), the situation is beginning to change. But it is not yet known whether that change will be of a speed, magnitude, direction, and serious commitment that honors the weight of this crisis – the extreme debility of patients, the complete lack of approved diagnostics and treatments, the stagnation in research and epidemiology; the widespread medical disbelief in the disease; and the utter lack of appropriate medical care and patient support structures. Band-aids, small point solutions, and incremental changes to business as usual are not acceptable substitutes for the sweeping changes that are needed to correct this medical tragedy. As a nation, we have the opportunity to make rapid change for ME patients but to achieve that, the U.S. Department of Health and Human Services (HHS) must exert its leadership position and finally takes the bold, committed, fully resourced, and urgently executed steps necessary to correct this terrible injustice. The medical community must learn about this disease and how to appropriately manage it and stop harming ME patients with inappropriate treatments and disbelief. And as a community, we must demand what we need, not accept what we are given. About this document: For anyone new to this disease, the story of what has happened to ME patients is difficult to understand as it is obscured by a mish-mash of disease labels, bad disease definitions, sloppy science, and misinformation. The objective in creating this manuscript was to compile a detailed reference that shines a light on how neglect, political agendas and bad science have impacted research, clinical care, and ME patients and what has to change to move forward. The focus is on the policy decisions and political and social forces that have held ME hostage since the mid- 1980s, including how HHS and a group of psychiatrists have controlled the way in which this Thirty Years of Disdain: How HHS Buried M.E. December 2015. (M. Dimmock, M. Lazell-Fairman) 3 disease has been viewed, studied, and treated. Because this history is convoluted and open to interpretation, this manuscript may have unintentionally omitted or misinterpreted some key information. Any substantial errors or omissions will be corrected. Comments can be sent to medimmock@gmail.com About the use of disease labels in this document: This field has been confounded by the adoption of overly broad and fatigue-focused “CFS” definitions that do not require key features of ME and are linked to psychogenic causes. Magnifying this muddle has been the interchangeable use of disease names (e.g. “CFS,” “ME,” ME/CFS,” and now “SEID”, etc) to refer to any of a set of twenty disparate ME and CFS definitions. Together, the bad definitions and sloppy naming practices have created confusion on the nature of ME, which has impeded not only research and medical care, but also even simple communication. To avoid this confusion, this manuscript uses only the term “myalgic encephalomyelitis” when referring to the neuroimmune disease with its characteristic post-exertional malaise. This name was chosen not because of a personal preference for the name but because ME is the historical name of this disease, adopted by the World Health Organization in 1969. The term “chronic fatigue syndrome” is used to refer to the fatigue-centered disease definitions that do not require the hallmark symptoms of ME. Other terms, such as “ME/CFS” and “CFS/ME” are used when the HHS agency uses that term, as with NIH’s Trans-NIH “ME/CFS” workgroup. This document can be found at http://bit.ly/The_Burial_of_ME_Summary. A longer version with additional content and references is available at http://bit.ly/The_Burial_of_ME_Background. Feel free to link to the document, print for personal use or quote as long as you cite the authors, the title, the version date (December 2015) and the link. Many of the references cited in this document are available online and can be quoted directly. As this document may change, we ask that you link to it rather than posting it elsewhere. I want to acknowledge the huge debt of gratitude that I owe to the many patients, researchers, and clinicians who have been fighting this battle for many years, sometimes decades, in spite of continued dismissal by HHS. Their painfully gained knowledge and experience has been and continues to be my teacher. I am honored to know them and to learn from them. Finally and most of all, I want to thank my son for his inspiration and encouragement to pursue this project. In spite of his young age, he quickly and accurately sized up the institutional barriers and neglect that he and all ME patients have been up against. He understood the importance of telling this story even when he became unable to do so himself. The vision, the heart, and the soul of this project belong to him. Mary Dimmock Thirty Years of Disdain: How HHS Buried M.E. December 2015. (M. Dimmock, M. Lazell-Fairman) 4 Matthew’s Story My son, Matthew, was always determined to take on challenges beyond his years. When he was 12, he declared that he wanted to learn to skydive and was heartbroken to learn that safety regulations dictated that he wait until he turn 18. When I asked why he was so disappointed, he said that he didn’t want to reach the end of his life and discover that he had missed his chance to experience the world. He went skydiving on his eighteenth birthday. That type of quiet determination and hunger for experience defined my son. It drove him to study in Hanoi, Vietnam during college and to devote himself to academics, achieving high honors and departmental awards. It led his advisor to say that he had one of the most incisive and analytical minds of any student that she had ever taught.
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]
  • 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: subscribe@let-me.be You can un-subscribe by sending a mail to: unsubscribe@let-me.be Textual contributions for the October issue need to be supplied in Word by 10st December and sent to: contribute@let-me.be 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]
  • 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]
  • 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
    [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]
  • Journal of Iime Volume 1 Issue 1 2
    JJJooouuurrrnnnaaalll ooofff IIIiiiMMMEEE IIInnnvvveeesssttt iiinnn MMMEEE IIInnnttteeerrrnnnaaatttiiiooonnnaaalll MMMEEE///CCCFFFSSS CCCooonnnfffeeerrreeennnccceee 222000000777 SSSpppeeeccciiiaaalll VOLUME 1 ISSUE 1 Invest in ME Charity Nr 1114035 www.investinme.org Journal of IiME Volume 1 Issue 1 2 Welcome from Invest in ME Welcome to the first Journal of Invest in ME – a combination of research, information, news, stories and other articles relating to myalgic encephalomyelitis (ME). Facts About ME This first version is also serving a dual purpose in that it is acting as a An estimated 250,000 component of the delegate’s conference pack for the 2nd Invest in ME International ME/CFS Conference 2007, held in Westminster, London, UK. people suffer from ME in the UK Invest in ME welcomes delegates, presenters and media from ten countries around the world to the conference – emphasising that ME recognises no international boundaries. The interest in the conference also demonstrates the need for some of IiME’s main objectives – more education and proper funding for biomedical research into ME. In this document we include articles from renowned ME experts who ME Story were not able to be present at the conference this year as well as those who are. We also include other ME experts who are presenting. IiME I fell ill with the flu the hope to publish our journal throughout the year. As with the IiME same time as Antony, conference it will allow a platform for researchers, scientists, healthcare my then staff and politicians to be able to share and provide information boyfriend/fiancé. He relevant to those supporting, campaigning for or suffering from ME.
    [Show full text]
  • Parliamentary Briefing
    1 BRIEFING FOR MYALGIC ENCEPHALOMYELITIS: 'TREATMENT AND RESEARCH' WESTMINSTER HALL, 21 JUNE 2018. (This briefing has been reproduced without amendment for the Back Bench Business debate on 24 Jan 2019) Contents About ME 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, Tymes Trust, WAMES, Hope 4 ME & Fibro Northern Ireland, 25% M.E. Group 2 About 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.
    [Show full text]
  • CBT and GET Database
    www.hfme.org/cbtandget.htm A CBT and GET database CBT and GET database Copyright © Jodi Bassett September 2006. This version updated April 2009. Taken from www.hfme.org The CBT and GET Database is a stand-alone comprehensive guide to the use of CBT and GET on patients with Myalgic Encephalomyelitis (M.E.) and the bogus psychiatric or 'behavioural' paradigm of M.E. generally. This 170 + page resource is aimed at lawyers, politicians, media, the friends and family of sufferers - but primarily at those clinicians who choose to recommend CBT and GET to their patients. It is hoped that these doctors will read something here that will forever change their minds on this subject and so benefit their patients, and themselves, as well as society in general. TABLE OF CONTENTS: Page 3 Section 1: Introduction/Overview: Features the ‗Smoke and Mirrors‘ paper and includes a copy of ‗The effects of CBT and GET on patients with Myalgic Encephalomyelitis‘ Page 43 Section 2: Recommended background reading. Includes a copy of ‗A warning on ‗CFS,‘ ‗ICD- CFS‘ and ‗ME/CFS‘ research and advocacy‘ and ‗What is M.E.?‘ Page 69 Section 3: Research and articles which expose the lack of scientific legitimacy (and the hidden financial and political motivations) underlying the 'behavioural' paradigm of M.E. and the use of CBT and GET on M.E. patients Page 122 Section 4: A summary of the available medical research Page 132 Section 5: Patient accounts of CBT Page 153 Section 6: Patient accounts of GET Page 177 Section 7: Conclusion/Summary of key points (followed by a full reference list) www.hfme.org 2 A CBT and GET database Smoke and mirrors - An analysis of the scientific legitimacy of the claims that cognitive behavioural therapy (CBT) and graded exercise therapy (GET) are appropriate, safe and effective treatments for people with M.E.
    [Show full text]
  • Briefing for ‘Myalgic Encephalomyelitis: Treatment St and Research’ Westminster Hall, 21 ​ June 2018 ​
    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, Hope 4 ME & Fibro Northern Ireland ​ ​ ​ ​ ​ ​ 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.
    [Show full text]
  • NAM Chronic Fatigue Syndrome
    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]