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==Severely ill patients== Considerable variation exists in the severity of the disease. The [[International Consensus Criteria]] lists the following severity levels (it should be noted that even "mild" ME/CFS consists of significant debility): *Mild = 50% reduction in pre-illness activity levels *Moderate = mostly housebound *Severe = mostly bedridden *Very Severe = totally bedridden, and needing help with basic functions. At least [[Severe and very severe ME|25% of people with ME/CFS are bedbound or housebound]], often for years or even decades, so are largely an invisible population.<ref name="IOM2015MECFS" /><ref name="DerekPrisk2009" /><ref>[http://iacfsme.org/PDFS/2017JanNewsletter/8-Japan-2014-Patient-Survey.aspx ME/CFS Patient Survey Report: Ministry of Health Survey Reveals Harsh Reality of ME/CFS Patients in Japan - IACFSME - By Mieko Shinohara]</ref> So invisible in fact, that they have rarely been included as part of research because their level of debility precludes them from traveling to laboratories for required testing. The [[Open Medicine Foundation]]'s [[ME/CFS Severely Ill, Big Data Study]] will be the first in-depth study of people with a severe form of ME/CFS. This study has so far produced the groundbreaking paper [[Metabolic features of chronic fatigue syndrome]]. It is estimated that 25% of ME/CFS patients are severely ill and are housebound or bedbound. Notable patients with severe or very severe ME/CFS include [[Whitney Dafoe]], [[Karina Hansen]], [[Lynn Gilderdale]], [[Laura Hillenbrand]], [[Tom Kindlon]], [[Vanessa Li]], [[Doctor Speedy]], [[Naomi Whittingham]], [[Jamison Hill]] and [[Jessica Taylor-Bearman]]. Though uncommon, there have been [[causes of death|instances of deaths]] which have been attributed to the disease (see [[Sophia Mirza]], [[Merryn Crofts]]). National Statistics report an average of 10 - 12 deaths per year in England and Wales [[Causes of death|partly or fully caused by ME/CFS]], with almost all patients dying being of working age. <ref name="ONS2018">{{Cite web | url = https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/adhocs/008461mentionsofpostviralfatiguesyndromebenignmyalgicencephalomyelitisdeathsregisteredinenglandandwales2001to2016 | title = Mentions of postviral fatigue syndrome (benign myalgic encephalomyelitis), deaths registered in England and Wales, 2001 to 2016 | website = Office for National Statistics|access-date=2019-03-06}}</ref>
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