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Severe and very severe ME
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==<span id="verysevere">Very severe ME</span>== [[File:Merry Crofts sick.JPG|250px|thumb|right|[[Merryn Crofts]] was bedbound and unable to eat before she died of very severe ME.]] Merryn weighed six stone (84 lbs) and was just 21 years old when she died; her autopsy revealed [[Dorsal root ganglia|ganglia]] [[inflammation]]. It is suspected that in the later years of her illness Merryn also suffered from [[Ehlers-Danlos syndrome|EDS]] and [[Mast cell activation disorder|MCAD]]. Her death certificate was reported to be the second in the [[United Kingdom|UK]] to attribute a death to [[myalgic encephalomyelitis]] (M.E.).<ref name="Vindication">{{Cite news | publisher=BBC Radio 5 Live|url=https://www.bbc.co.uk/news/health-44969741 | title = 'Vindication' for woman who wanted ME on death certificate | first = Jim | last = Taylor| date = July 27, 2018}}</ref> Doctors initially suggested that Merryn was having panic attacks, and her family were later told that she may have conversion disorder, a mental condition formerly known as hysteria. "I knew it wasn't. I work with people who have panic attacks and I can talk them down," said Clare. "Merryn was starting to think 'What if it is in my head?' It made her doubt herself, which is awful." Eventually a private doctor diagnosed Merryn with ME and she began to receive treatment on the NHS. Within six months of falling ill she was using a wheelchair, and within a year she was housebound.<br> A very severe ME patient's experience photo shows clear signs of [[muscle atrophy|muscle wasting]] and [[disability]] - but for the majority of patients it remains an [[invisible illness]]. [[File:Whitney.JPG|300px|thumb|[[Whitney Dafoe]] is an American photographer who has very severe ME. Whitney can no longer speak or handle contact with anyone but his parents due to [[visual dysfunction]]. His father is [[Ronald Davis|Ron Davis]], a world-renowned geneticist who is working to solve his son's disease.]]<br> People with very severe ME are totally '''bedbound''' and unable to stand at all.<ref name="northeast" /><ref name="StrassheimLambson2017" /><br><br>Some people with very severe ME have improved over time, or after surgery from [[cervical spinal stenosis]].<ref name="cagedbird2016">{{Cite web|url=https://www.youtube.com/watch?v=ZzUo0v5lf9c | title = ME Awareness May 2016 | last = The Caged Bird | first= | author-link =| date = 2016 | website = YouTube|publisher=[[Let's Do It for ME]]|archive-url=|archive-date=|url-status=|access-date=2019-01-28}}</ref><ref name="Rowe2018" /> {{clear}}
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