{"id":40976,"date":"2023-10-03T07:44:07","date_gmt":"2023-10-03T06:44:07","guid":{"rendered":"https:\/\/wames.org.uk\/cms-english\/?p=40976"},"modified":"2023-10-03T08:18:19","modified_gmt":"2023-10-03T07:18:19","slug":"me-cfs-delivery-plan-unhelpful-language","status":"publish","type":"post","link":"https:\/\/wames.org.uk\/cms-english\/me-cfs-delivery-plan-unhelpful-language\/","title":{"rendered":"ME\/CFS Delivery plan: Unhelpful language"},"content":{"rendered":"

Language can hurt<\/strong><\/h2>\n

 <\/p>\n

“The way language is used can frustrate or upset people who have ME\/CFS.”<\/p><\/blockquote>\n

This is one of the discoveries made by the Working Group who have developed the draft English ME\/CFS Delivery Plan:<\/p>\n

My full reality: the interim delivery plan on ME\/CFS<\/a><\/p>\n

\"\"“This insight comes from personal experience, gathered by people with personal experience who have participated in the development process for the delivery plan on ME\/CFS. The evidence has not been validated by the government but represents a flavour of what we have heard through our meetings and workshops.”<\/p>\n

They give examples of how life with ME\/CFS is often misunderstood and can lead to hurtful comments:<\/p>\n

Chronic Fatigue Syndrome as an alternative description of ME\/CFS<\/strong><\/h3>\n

“I\u2019d love it if I could stay in bed all day<\/em>“<\/p>\n

“You\u2019re just lazy<\/em>”\u00a0 \u00a0 \u00a0 \u00a0 \u00a0“Yeah, I\u2019m very tired too<\/em>“<\/p>\n

Normal experience of illness is that people recover<\/strong><\/h3>\n

“My mum\u2019s friend had that and she recovered<\/em>“<\/p>\n

“You should aim for full recovery<\/em>“<\/p>\n

“We can get you back to normal with some time and effort<\/em>“<\/p>\n

The misconception that\u00a0ME\/CFS\u00a0is a mental health condition, \u2018all in the mind\u2019 or that you can get better or overcome symptoms by the way you think<\/strong><\/h3>\n

“Maybe you should ask your doctor to put up your dose of antidepressants<\/em>“<\/p>\n

“If you thought differently, you would get better<\/em>“<\/p>\n

“It helps to have a positive attitude<\/em>“<\/p>\n

The fact that there is no medical test to prove that someone has\u00a0ME\/CFS<\/strong><\/h3>\n

“good news – the tests say there is nothing wrong with you<\/em>“<\/p>\n

“you are lying<\/em>“<\/p>\n

“maybe you are depressed about something<\/em>“<\/p>\n

\u2018Post-exertional malaise\u2019 or\u00a0PEM\u00a0is a technical term which most people will not have heard of<\/strong><\/h3>\n

“You did nothing yesterday, why are you still in bed?<\/em>“<\/p>\n

Symptoms of ME\/CFS cannot be seen<\/strong><\/h3>\n

“You look normal<\/em>”\u00a0 \u00a0 \u00a0 \u00a0“You just don\u2019t want to work<\/em>“<\/p>\n

“You don\u2019t need the wheelchair because I saw you walk last week<\/em>“<\/p>\n

“No, you can\u2019t have a home visit<\/em>“<\/p>\n

People with mild or moderate\u00a0ME\/CFS\u00a0can manage their energy to do something out of their ordinary routine, as long as they rest before and afterwards as necessary<\/strong><\/h3>\n

“How can you go for lunch with someone, but you can\u2019t go to work for 8 hours?<\/em>“<\/p>\n

“The tests are only available in the mornings<\/em>“<\/p>\n

“We need you to commit to attending weekly<\/em>“<\/p>\n

Read the full report<\/strong>: Language use in relation to\u00a0ME\/CFS\u00a0– a personal perspective<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

Language can hurt   “The way language is used can frustrate or upset people who have ME\/CFS.” This is one of the discoveries made by the Working Group who have developed the draft English ME\/CFS Delivery Plan: My full reality: … 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":[],"class_list":["post-40976","post","type-post","status-publish","format-standard","hentry","category-news"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p5qkYK-aEU","_links":{"self":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/40976","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=40976"}],"version-history":[{"count":7,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/40976\/revisions"}],"predecessor-version":[{"id":41001,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/40976\/revisions\/41001"}],"wp:attachment":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/media?parent=40976"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/categories?post=40976"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/tags?post=40976"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}