{"id":18449,"date":"2018-10-26T11:41:35","date_gmt":"2018-10-26T11:41:35","guid":{"rendered":"http:\/\/wames.org.uk\/cms-english\/?p=18449"},"modified":"2018-10-29T09:02:40","modified_gmt":"2018-10-29T09:02:40","slug":"situation-for-me-patients-in-wales-is-disgraceful-english-translation","status":"publish","type":"post","link":"https:\/\/wames.org.uk\/cms-english\/situation-for-me-patients-in-wales-is-disgraceful-english-translation\/","title":{"rendered":"Situation for ME patients in Wales is ‘disgraceful’ (English translation)"},"content":{"rendered":"

Situation for ME patients in Wales is ‘disgraceful’<\/strong><\/h2>\n

a translation of: Sefyllfa i gleifion ME yng Nghymru yn ‘warthus’\u00a0<\/a>on the BBC Cymru fyw website, 24 Oct 2018 (This translation is not definitive, it may need some tweaking!)<\/p>\n

Emma-Jayne Lloyd from Cardiff shares her experience of living with the condition of ME.<\/em><\/strong><\/p>\n

The situation for people in Wales who suffer from the condition of ME, or chronic fatigue syndrome, is “disgraceful”, according to one specialist in the field.<\/p>\n

Charities will be holding a protest at the Senedd in Cardiff Bay on Wednesday to show a movie about the disease.<\/p>\n

Jan Russell, from WAMES (Support Society ME and CFS Cymru), has called the lack of diagnosis and lack of advice on symptoms “a health and social care crisis, even a humanitarian crisis”.<\/p>\n

The Welsh Government said “health boards in Wales are responsible for the healthcare requirements of their populations”.<\/p>\n

‘Lack of understanding’ of chronic fatigue<\/strong><\/h3>\n

Speaking on the BBC’s Eye On Wales program, Charles Shepherd, a medical advisor to the ME Association, said:<\/p>\n

“From my experience with patients in Wales, many GPs are still very uncertain about how to diagnose this illness.<\/p>\n

“They’re just as insecure about how to manage the illness.<\/p>\n

“There are five adult services in Wales but none of them are led by a multidisciplinary doctor, and that is what these services should be.<\/p>\n

“Overall, the situation in Wales is scandalous.”<\/p>\n

Mistaken ME for depression<\/strong><\/h3>\n

Emma-Jayne Lloyd, aged 39 and from Cardiff, has suffered from ME symptoms since she was 18, but only last year she was given an official diagnosis.<\/p>\n

“Imagine rising in the morning with a hangover, flu and the worst \u00a0jet-lag you’ve ever had, all mixed up together,” she said.<\/p>\n

“Then imagine that you get up every day and feel like that. That’s what ME is.<\/p>\n

“The pain is all through the body, you are so tired and you’re so weak that you cannot get up, or dress, or try to make food – everything is difficult.<\/p>\n

“Everything you do, you must think about, because everything causes pain, or can cause you to go back to bed and sleep.”<\/p>\n

\"\"<\/p>\n

Two years ago Emma-Jayne had to stop her job as a teacher, and she does not drive now<\/p>\n

For years, doctors thought she was depressed, and Ms Lloyd says that health workers are only beginning to understand ME.<\/p>\n

She says that ME clinics and consultants are available in England, but there is no such provision in Wales.<\/p>\n

“There’s nothing in the blood, so they all think it’s something mental,” he said.<\/p>\n

“There is no medication, no consultants, no clinic here.<\/p>\n

“If you break your arm or have cancer, you know that you can go somewhere and someone with expertise can talk to you – but there is no one with expertise in ME in Wales . “<\/p>\n

‘Change is slow’<\/strong><\/p>\n

In 2014, recommendations were made to the Welsh Government on how to improve diagnosis at primary care level, as well as treating and managing symptoms.<\/p>\n

An action group was set up in 2015 to work with Local Health Boards across Wales to make these recommendations active.<\/p>\n

Owen Hughes, who chairs the action group, said “progress has been slow”.<\/p>\n

“There are some very good services in Wales and it’s a shame that everyone does not have those services on their doorstep,” he said.<\/p>\n

“That is part of the role of the action group – to share good practice and ensure that everyone is able to access high quality information and services.”<\/p>\n

What is ME?<\/strong><\/p>\n

Around 13,000 people in Wales suffer from ME (Myalgic Encephalomyelitis), or chronic fatigue syndrome (CFS).<\/p>\n

70% of people with the disease are women – and it is more likely to hit people between their twenties through to their 50s.<\/p>\n

The disease is usually triggered by a viral infection.<\/p>\n

Symptoms include muscle tiredness caused by activity, often with pain, as well as neurological symptoms such as short-term memory loss and ‘brain fog’.<\/p>\n

Patients can also have problems with balance, ability to find words and lack of temperature control.<\/p>\n

There is no complete cure to the condition, but symptoms with early diagnosis and with the right advice can be improved.<\/p>\n

#TimeForUnrestWales<\/p>\n

\u00a0<\/u><\/p>\n","protected":false},"excerpt":{"rendered":"

Situation for ME patients in Wales is ‘disgraceful’ a translation of: Sefyllfa i gleifion ME yng Nghymru yn ‘warthus’\u00a0on the BBC Cymru fyw website, 24 Oct 2018 (This translation is not definitive, it may need some tweaking!) Emma-Jayne Lloyd from … 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":[4674,4683],"class_list":["post-18449","post","type-post","status-publish","format-standard","hentry","category-news","tag-bbc-cymru","tag-emma-jayne-lloyd"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p5qkYK-4Nz","_links":{"self":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/18449","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=18449"}],"version-history":[{"count":2,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/18449\/revisions"}],"predecessor-version":[{"id":18461,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/18449\/revisions\/18461"}],"wp:attachment":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/media?parent=18449"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/categories?post=18449"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/tags?post=18449"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}