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Goodbye chronic fatigue syndrome, hello SEID

first_imgA committee convened by the Institute of Medicine (IOM) has proposed a new name for a condition known variously as chronic fatigue syndrome or myalgic encephalomyelitis. The unwieldy new moniker: systemic exertion intolerance disease, or SEID. In a report released today, the committee also suggests a new set of diagnostic criteria for SEID.After reviewing more than 9000 scientific studies, hearing testimony from experts, and soliciting input from the public, the committee concluded that “the name ‘chronic fatigue syndrome’ has done a disservice to many patients,” calling it  “stigmatizing and trivializing.” Myalgic encephalomyelitis (ME), they noted, “does not accurately describe the major features of the disease.”At least 20 sets of diagnostic criteria exist, the committee noted, which has confused patients, clinicians, and their families, as well as researchers studying the disease. The proposed diagnostic criteria are more focused on “the central symptoms” such as a reduced or impaired ability to work and study, malaise after exertion, and “unrefreshing” sleep.  The report, “Beyond Myalgic Encephalitis/Chronic Fatigue Syndrome: Redefining an Illness,” runs 235 pages.Sign up for our daily newsletterGet more great content like this delivered right to you!Country *AfghanistanAland IslandsAlbaniaAlgeriaAndorraAngolaAnguillaAntarcticaAntigua and BarbudaArgentinaArmeniaArubaAustraliaAustriaAzerbaijanBahamasBahrainBangladeshBarbadosBelarusBelgiumBelizeBeninBermudaBhutanBolivia, Plurinational State ofBonaire, Sint Eustatius and SabaBosnia and HerzegovinaBotswanaBouvet IslandBrazilBritish Indian Ocean TerritoryBrunei DarussalamBulgariaBurkina FasoBurundiCambodiaCameroonCanadaCape VerdeCayman IslandsCentral African RepublicChadChileChinaChristmas IslandCocos (Keeling) IslandsColombiaComorosCongoCongo, The Democratic Republic of theCook IslandsCosta RicaCote D’IvoireCroatiaCubaCuraçaoCyprusCzech RepublicDenmarkDjiboutiDominicaDominican RepublicEcuadorEgyptEl SalvadorEquatorial GuineaEritreaEstoniaEthiopiaFalkland Islands (Malvinas)Faroe IslandsFijiFinlandFranceFrench GuianaFrench PolynesiaFrench Southern TerritoriesGabonGambiaGeorgiaGermanyGhanaGibraltarGreeceGreenlandGrenadaGuadeloupeGuatemalaGuernseyGuineaGuinea-BissauGuyanaHaitiHeard Island and Mcdonald IslandsHoly See (Vatican City State)HondurasHong KongHungaryIcelandIndiaIndonesiaIran, Islamic Republic ofIraqIrelandIsle of ManIsraelItalyJamaicaJapanJerseyJordanKazakhstanKenyaKiribatiKorea, Democratic People’s Republic ofKorea, Republic ofKuwaitKyrgyzstanLao People’s Democratic RepublicLatviaLebanonLesothoLiberiaLibyan Arab JamahiriyaLiechtensteinLithuaniaLuxembourgMacaoMacedonia, The Former Yugoslav Republic ofMadagascarMalawiMalaysiaMaldivesMaliMaltaMartiniqueMauritaniaMauritiusMayotteMexicoMoldova, Republic ofMonacoMongoliaMontenegroMontserratMoroccoMozambiqueMyanmarNamibiaNauruNepalNetherlandsNew CaledoniaNew ZealandNicaraguaNigerNigeriaNiueNorfolk IslandNorwayOmanPakistanPalestinianPanamaPapua New GuineaParaguayPeruPhilippinesPitcairnPolandPortugalQatarReunionRomaniaRussian FederationRWANDASaint Barthélemy Saint Helena, Ascension and Tristan da CunhaSaint Kitts and NevisSaint LuciaSaint Martin (French part)Saint Pierre and MiquelonSaint Vincent and the GrenadinesSamoaSan MarinoSao Tome and PrincipeSaudi ArabiaSenegalSerbiaSeychellesSierra LeoneSingaporeSint Maarten (Dutch part)SlovakiaSloveniaSolomon IslandsSomaliaSouth AfricaSouth Georgia and the South Sandwich IslandsSouth SudanSpainSri LankaSudanSurinameSvalbard and Jan MayenSwazilandSwedenSwitzerlandSyrian Arab RepublicTaiwanTajikistanTanzania, United Republic ofThailandTimor-LesteTogoTokelauTongaTrinidad and TobagoTunisiaTurkeyTurkmenistanTurks and Caicos IslandsTuvaluUgandaUkraineUnited Arab EmiratesUnited KingdomUnited StatesUruguayUzbekistanVanuatuVenezuela, Bolivarian Republic ofVietnamVirgin Islands, BritishWallis and FutunaWestern SaharaYemenZambiaZimbabweI also wish to receive emails from AAAS/Science and Science advertisers, including information on products, services and special offers which may include but are not limited to news, careers information & upcoming events.Required fields are included by an asterisk(*)Peter Rowe, who heads the Chronic Fatigue Clinic at the Johns Hopkins Children’s Center in Baltimore, Maryland, and was one of 15 committee members, had high praise for the process and the product. “This is a phenomenal report,” Rowe said, noting that it had unanimous support. “It has the best summary of the evidence that I’ve ever read.” The U.S. Department of Health and Human Services and the Social Security Administration sponsored the IOM study and report.Systemic exertion intolerance disease does not exactly roll off the tongue. IOM committee member Ronald Davis, a biochemist who heads the genome center at Stanford University in Palo Alto, California, says the group considered about 100 options. “Boy, did we  struggle with that,” he said. “It’s hard to come up with a good name, and I don’t think this is a perfect name.”But Davis thinks its essential to do away with chronic fatigue syndrome. “My son is sick with it, and when I tell people, they say, ‘I had that once,’ because they were tired once,” he said. “ME is a better name, but there are no real data that fit the name.”Davis hopes the report will convince all clinicians that they can diagnose the disease and that it is real. “I hope it will get rid of those who may not believe it,” Davis said. “They’ll have to keep it to themselves. It’s incompetence and it’s malpractice.”The new diagnostic criteria build on what are known as the Canadian Consensus Criteria, first put forward in 2003. But the report offers a distinct, simpler definition that focuses on “the central element of this disorder,” said committee chair Ellen Wright Clayton at “public release event” held at IOM this morning. “The essence of this disorder is that if patients with this disorder engage in exertion—cognitive, emotional, physical, whatever—that their symptoms are made much worse and often for a prolonged period of time,” said Clayton, a law professor at Vanderbilt University in Nashville. The name, she said, reflects this. “We want to name it for what it is,” she said. “This is what the patients experience.”The committee was  “struck by the relative paucity of research” that has gone into SEID. “Remarkably little research funding has been made available to study the etiology, pathophysiology, and effective treatment of this disease, especially given the number of people afflicted,” the report noted. (It cited estimates that said between 836,000 and 2.5 million Americans have chronic fatigue syndrome or ME, but Davis points out that some popular diagnostic criteria have far too liberal definitions of the condition.)The report recommends that a multidisciplinary committee review the diagnostic criteria for SEID within 5 years. Rowe says they may want to review the name, too. “We don’t believe it’s going to be the name forever, but it’s a step forward,” he says.last_img

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