Sundheds- og Forebyggelsesudvalget 2014-15 (1. samling)
SUU Alm.del Bilag 1324
Offentligt
Kære Sundhedsminister, Sundhedsstyrelse, Sundhedsudvalg, Regionsformænd og Lægeforeninger
Jeg skriver til jer, da jeg vil være helt sikker på, at I kender den nyeste udvikling om sygdommen ME –
Myalgisk Encephalomyelitis (i folkemunde kaldet Kronisk Træthedssyndrom).
Det er nu slået helt fast at ME er en meget alvorlig fysisk sygdom.
Det er konklusionen af to uafhængige tilbundsgående undersøgelser, hvor man har gennemgået viden
på området herunder 9000 peer reviewed videnskabelige artikler om emnet.
Den første rapport (1) er iværksat af de forskellige amerikanske sundheds-institutioner (the Center of
Disease Control and Prevention (CDC), the National Institute of Health (NIH), the Food and Drug
Administration (FDA), the Department of Health and Human Services (HHS), the Agency for
Healthcare Research and Quality og the Social Security Administration).
I rapporten fra det uvildige Institute of Medicin of the National Academies of Science (IOM), som
udkom d. 10 februar 2015 konkluderes:
“The primary message of this report is that ME/CFS is a serious, chronic, complex, multisystem
disease that frequently and dramatically limits the activities of affected patients. In its most severe
form, this disease can consume the lives of those whom it afflicts. It is “real.””
Rapporten kommer med forslag til diagnostiske kriterier, og det foreslås at sygdommens navn ændres
til SEID (Systemic Exertion Intolerance Disease). Komiteen har valgt dette navn for at tydeliggøre, at
anstrengelse af enhver art —fysisk, kognitiv, emotionelt— har negative påvirkninger i mange af
patientens organsystemer og i mange aspekter af patientens liv.
Den anden rapport (2) er resultatet af en pathway-to-prevent workshop afholdt d. 9.-10. december
2014 iværksat af the National Institute of Health (NIH).
I draft-rapporten konkluderes:
”Often, patients with ME/CFS are labeled as lazy, deconditioned, and disability-seeking; this hampers
scientific progress. Both society and the medical profession often treat patients with ME/CFS with
disdain, suspicion, and disrespect. Patients are frequently treated with psychiatric and other
inappropriate drugs that may cause harm. Patients usually have to make extraordinary efforts, at
extreme personal costs, to find a physician who will correctly diagnose and treat ME/CFS symptoms”.
Og om GET og CBT står der:
”Existing
treatment studies (cognitive behavioral therapy [CBT] and graded exercise therapy [GET])
demonstrate measurable improvement, but this has not translated to improvements in quality of life
(QOL). Thus, they are not a primary treatment strategy and should be used as a component of
multimodal therapy”.
Columbia University har også lige publiceret biologiske beviser for at ME er en fysisk sygdom i peer
reviewed videnskabelige tidsskrifter (3).