{"id":21075,"date":"2019-05-11T07:19:47","date_gmt":"2019-05-11T07:19:47","guid":{"rendered":"https:\/\/wames.org.uk\/cms-english\/?p=21075"},"modified":"2021-11-08T21:00:56","modified_gmt":"2021-11-08T21:00:56","slug":"bbc-wales-news-humanitarian-crisis-for-me-sufferers-in-wales","status":"publish","type":"post","link":"https:\/\/wames.org.uk\/cms-english\/bbc-wales-news-humanitarian-crisis-for-me-sufferers-in-wales\/","title":{"rendered":"BBC Wales news: ‘Humanitarian crisis’ for ME sufferers in Wales"},"content":{"rendered":"

BBC Wales News article, 11 May 2019: ‘Humanitarian crisis’ for ME sufferers in Wales<\/a><\/strong><\/h3>\n

 <\/p>\n

\"\"<\/a><\/p>\n

“People thought I’d moved away or joined a nunnery”, said Marian Gray, who admits going “missing from life”.<\/p>\n

She disappeared because she was one of the 13,000 people in Wales battling ME.<\/p>\n

Campaigners say there is a “humanitarian crisis” and promises of better support from the Welsh Government have failed to materialise.<\/p>\n

On Saturday, Cardiff joins 300 places around the world is holding an event for ME awareness week, with empty shoes symbolising people missing from life.<\/p>\n

“I’m a profoundly sociable person but people in Aberystwyth thought I’d moved away or joined a nunnery because they hadn’t seen me in the places they should see me,” said Ms Gray.<\/p>\n

“I had to leave my mountain biking shoes, my violin playing shoes.<\/p>\n

“To continue working, I had to empty my life of anything else, including a social life.”<\/p>\n

Myalgic encephalomyelitis (ME) or Chronic Fatigue Syndrome is usually triggered by a viral infection which leads to muscle fatigue, pain and neurological symptoms such as short term memory loss.<\/p>\n

About 13,000 people in Wales are thought to suffer from ME, and 70% of those are women.<\/p>\n

Ms Gray, an international officer at Aberystwyth University, first had symptoms at primary school – but more than 30 years later, she says little has improved.<\/p>\n

“The dialogue has not changed,” she added.<\/p>\n

“The doctor says ‘you have this diagnosis but there is nothing we can do’.”<\/p>\n

By being allowed to work from home at times, she manages a career – but said some people suffering severe symptoms cannot bear bright lights or being around loved ones.<\/p>\n

“There is a humanitarian crisis in the healthcare system,” said Jan Russell, who has suffered with the condition for 30 years.<\/p>\n

“There is 13 to 15,000 people with ME in Wales, 25% of which are severely affected.<\/p>\n

“In Wales people are missing from the healthcare system, and when they go to the surgery, not always treated with respect.”<\/p>\n

Ms Russell, who is chairwoman of Working for ME in Wales, said few GPs had enough knowledge of the condition – and those left housebound felt “invisible and ignored”.<\/p>\n

“You are lucky if you can find a doctor who has an understanding of ME,” said Miriam Wood, a former NHS worker who is part of Cardiff-based ME Support in Glamorgan.<\/p>\n

“They might be thinking the person is depressed and just give them antidepressants.”<\/p>\n

Ms Wood said the First Minister Mark Drakeford had pledged to create a pathway for people to get help more easily when he was health minister between 2013 and 2016.<\/p>\n

“We have been trying to find out what progress has been made but haven’t been able to,” she said.<\/p>\n

“We are still in the same place we were all those years ago when Mark Drakeford said changes would be made.”<\/p>\n

‘Invisible condition’<\/strong><\/h3>\n

A Welsh Government spokesman said: “We understand the challenges faced by people living with this condition and the impact it can have on their lives and their families.<\/p>\n

“That is why we are working with healthcare professionals and the third sector to strengthen ME services available across Wales.”<\/p>\n

Royal College of General Practitioners chairman Dr Peter Saul said ME is very difficult to diagnose and distinguish from other conditions.<\/p>\n

“It can take longer to diagnose it than other conditions but patients should not feel that they are being ignored or dismissed,” he added.<\/p>\n

“It is a sort of invisible condition for which there are no quick medical treatments.”<\/p>\n

Read the full article<\/a> with all the links<\/p>\n","protected":false},"excerpt":{"rendered":"

BBC Wales News article, 11 May 2019: ‘Humanitarian crisis’ for ME sufferers in Wales   “People thought I’d moved away or joined a nunnery”, said Marian Gray, who admits going “missing from life”. She disappeared because she was one of … 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":[2811,1850,5027,2192,5022,101,5023,195],"class_list":["post-21075","post","type-post","status-publish","format-standard","hentry","category-news","tag-millionsmissing","tag-bbc-news","tag-dr-peter-saul","tag-jan-russell","tag-marian-gray","tag-me-awareness-week","tag-miriam-wood","tag-welsh-government"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p5qkYK-5tV","_links":{"self":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/21075","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=21075"}],"version-history":[{"count":4,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/21075\/revisions"}],"predecessor-version":[{"id":33397,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/21075\/revisions\/33397"}],"wp:attachment":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/media?parent=21075"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/categories?post=21075"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/tags?post=21075"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}