Lighting Up a Hidden World - CFS and ME
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Lighting Up a Hidden World CFS and ME The onset can be fast and shocking or slow and insidious. It can happen to anyone at any age. A flu, a vaccination, or an infection can be the innocent beginnings to the potentially life-long and disabling illness called myalgic encephalomyelitis (ME), which is more commonly known as chronic fatigue syndrome (CFS), or ME/CFS in North America. In the mid 1980s, the U.S. Centers for Disease Control (CDC) was called in by concerned doctors who were witnessing an influx of patients with a mysterious illness. Eventually the CDC labeled the condition “chronic fatigue syndrome” which turned out to be very misleading. Decades later, in 2016, health agencies are finally beginning to agree with international experts that ME/CFS is a serious, chronic, multi-system illness. Through artwork, poetry, story-telling, and meticulous research, Lighting Up a Hidden World: CFS and ME takes readers into the fascinating, yet frightening, landscape of ME/CFS. Author Valerie Free shares her personal experiences and delivers illuminating first-hand perspectives from patients, caregivers, journalists, and medical professionals from within the global community in short easy-to-read segments. These stories reveal the disgrace, controversy and tragedy of worldwide neglect by political and health care systems, leaving ME/CFS research underfunded and millions of people marginalized, sick, and socially unsupported. Lighting Up a Hidden World: CFS and ME advocates for those too ill to speak out, abounds with patient resources, and offers realistic hope for the future. People living with this illness, along with their family and friends, will find compassion and camaraderie in its pages. This book reaches beyond the ME/CFS community exposing the themes of human suffering, resilience, and the need for social change. MAY 12 IS INTERNATIONAL AWARENESS DAY COMING SOON… A Book by Valerie Free As more information becomes available about the book, including the release date, it will be posted at: www.valeriefree.org
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MAY IS ME/CFS INTERNATIONAL AWARENESS MONTH... COMING SOON: A Book by Valerie Free. This two-page flyer describes Lighting up a Hidden World: CFS and ME, a book by Valerie Free. It explores the decades-long plight of the millions worldwide who are suffering from ME and CFS, what it is, what it does, and the lack of funding and medical support which is leaving people without care, cure and prevention.
Transcript of Lighting Up a Hidden World - CFS and ME
Lighting Up a Hidden World CFS and ME
Theonsetcanbefastandshockingorslowandinsidious.Itcanhappentoanyoneatanyage.Aflu,avaccination,oraninfectioncanbetheinnocentbeginningstothepotentiallylife-longanddisablingillnesscalledmyalgicencephalomyelitis(ME),whichismorecommonlyknownaschronicfatiguesyndrome(CFS),orME/CFSinNorthAmerica.
Inthemid1980s,theU.S.CentersforDiseaseControl(CDC)wascalledinbyconcerneddoctorswhowerewitnessinganinfluxofpatientswithamysteriousillness.EventuallytheCDClabeledthecondition“chronicfatiguesyndrome”whichturnedouttobeverymisleading.Decadeslater,in2016,healthagenciesarefinallybeginningtoagreewithinternationalexpertsthatME/CFSisaserious,chronic,multi-systemillness.
Throughartwork,poetry,story-telling,andmeticulousresearch,LightingUpaHiddenWorld:CFSandMEtakesreadersintothefascinating,yetfrightening,landscapeofME/CFS.AuthorValerieFreesharesherpersonalexperiencesanddeliversilluminatingfirst-handperspectivesfrompatients,caregivers,journalists,andmedicalprofessionalsfromwithintheglobalcommunityinshorteasy-to-readsegments.Thesestoriesrevealthedisgrace,controversyandtragedyofworldwideneglectbypoliticalandhealthcaresystems,leavingME/CFSresearchunderfundedandmillionsofpeoplemarginalized,sick,andsociallyunsupported.
LightingUpaHiddenWorld:CFSandMEadvocatesforthosetooilltospeakout,aboundswithpatientresources,andoffersrealistichopeforthefuture.Peoplelivingwiththisillness,alongwiththeirfamilyandfriends,willfindcompassionandcamaraderieinitspages.ThisbookreachesbeyondtheME/CFScommunityexposingthethemesofhumansuffering,resilience,andtheneedforsocialchange.
MAY 12 IS INTERNATIONAL AWARENESS DAY
COMING SOON…
A Book by Valerie Free
As more information becomes available about the book, including the release date, it will be posted at:
www.valeriefree.org
“Ms. Free's goal in writing this book was to help the general public understand what it is like to deal with ME/CFS, a severe, common and often-overlooked chronic condition. She accomplishes her goal by sharing her personal journey in Section 1 and featuring vignettes from members of the ME/CFS community in Section 2. The book blends science, information, caring, wisdom and humour. As a fellow Canadian, I am very proud of Ms. Free's contribution to lighting up this hidden world. Everyone will find insight into ME/CFS through the tapestry of stories found in this important and informative book.”
~ MARGARET PARLOR, PRESIDENT, NATIONAL ME/FM ACTION NETWORK (CANADA)
"There is truth in this inspiring book, which shares the heroic stories of individuals with ME/CFS who have battled stigma, discrimination and persecution in their search for appropriate care. This moving account of what Valerie and others have done is a must read and ultimately provides hope for us all that the status quo can be transformed through social action."
~LEONARD A. JASON, Ph.D. AUTHOR OF “PRINCIPLES OF SOCIAL CHANGE,” OXFORD UNIVERSITY PRESS (2013)
About the Author In 1990, Valerie Freewas a happy, vibrant thirty-year-oldwoman– acourt stenographer, a lovingwife, and themother of a precious babygirl. In Julyof thatyear, shecamedownwitha sudden, flu-like illnessandaftermonthsofunrelentingandbizarresymptomswasdiagnosedwithchronicfatiguesyndrome(CFS),latertobeunderstoodasmyalgicencephalomyelitis (ME) or ME/CFS. Valerie had entered a world thatshe could never have imagined, a world she still lives in to this day.Despite thechallengesposedbyherhealth, shewenton tosearch foranswers. Lighting Up a Hidden World: CFS and ME is the result,involving decades of research and outreach to the chronic illness
community.Hernaturalcuriosity,herloveofpeople,aswellaswords,haveallowedhertowritethisin-depthinvestigationintothismysteriousillness.ValerieresidesonanacreagewithherfamilyinAlberta,Canada.
