{"id":7938,"date":"2016-04-18T06:09:31","date_gmt":"2016-04-18T06:09:31","guid":{"rendered":"http:\/\/wames.org.uk\/cms-english\/?p=7938"},"modified":"2016-04-18T06:09:31","modified_gmt":"2016-04-18T06:09:31","slug":"what-im-really-thinking-the-person-with-me","status":"publish","type":"post","link":"https:\/\/wames.org.uk\/cms-english\/what-im-really-thinking-the-person-with-me\/","title":{"rendered":"What I\u2019m really thinking: the person with ME"},"content":{"rendered":"

Guardian article, by Anonymous,\u00a016 April 2016: What I\u2019m really thinking: the person with ME<\/a><\/p>\n

It is sometimes called chronic fatigue syndrome, but that\u2019s a bit of a misnomer. I\u2019m not just tired<\/p>\n

I have myalgic encephalomyelitis<\/a>. If you think it is hard to say, try living with it every day.<\/p>\n

Yes, I understand that your aunt had chronic fatigue, and that she took some B-vitamins and is all-better now. No, it isn\u2019t adrenal fatigue because that doesn\u2019t exist. Oh yes, how fantastic that your friend\u2019s friend was really tired after a virus, but she tried acupuncture and cut out wheat and dairy from her diet and next week she is running the London marathon.<\/p>\n

I don\u2019t have what they probably had, you see, because only 5% of people recover from myalgic encephalomyelitis. It is sometimes called chronic fatigue syndrome, but that\u2019s a bit of a misnomer. I\u2019m not just tired. The paralysis was the first worry. Then all the muscle pain. Then the memory loss. Then losing the ability to speak without stuttering. I started to forget what words meant. Or who my boyfriend was. Then the fatigue came to kick me when I was down. Then the nausea. Then the constant, unrelenting joint pain, headaches, and flu-like symptoms.<\/p>\n

Ah yes, I know. You were so tired last weekend, you just fell asleep on the sofa. But were you so tired that you slept solidly for 22 hours and then spent an hour getting from your bedroom to the bathroom and back again before sleeping for another 22 hours? I thought not.<\/p>\n

I\u2019ve improved a lot in eight years. But I\u2019ve been told this is as good as it gets. I will never recover unless medicine has a breakthrough. And I have accepted that, so why can\u2019t you? I appreciate your sympathy. Your advice and suggestions are well meant. But please, back off.<\/p>\n

\u2022 Tell\u00a0them what you\u2019re really thinking \u2013 email mind@theguardian.com<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

Guardian article, by Anonymous,\u00a016 April 2016: What I\u2019m really thinking: the person with ME It is sometimes called chronic fatigue syndrome, but that\u2019s a bit of a misnomer. I\u2019m not just tired I have myalgic encephalomyelitis. If you think it … Continue reading →<\/span><\/a><\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[1],"tags":[77],"class_list":["post-7938","post","type-post","status-publish","format-standard","hentry","category-news","tag-guardian"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p5qkYK-242","_links":{"self":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/7938","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/comments?post=7938"}],"version-history":[{"count":1,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/7938\/revisions"}],"predecessor-version":[{"id":7939,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/7938\/revisions\/7939"}],"wp:attachment":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/media?parent=7938"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/categories?post=7938"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/tags?post=7938"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}