{"links":{"self":"https://petitions.senedd.wales/petitions/247069.json"},"data":{"type":"petition","id":247069,"attributes":{"action":"Take urgent action so those with Severe Myalgic Encephalomyelitis in Wales are no longer left without vital medical care","background":"Service provision for people with Myalgic Encephalomyelitis (ME) remains inconsistent across Wales. In particular, major concerns persist regarding access for those with the severe form of the condition, leaving some families facing life-impacting decisions, without medical guidance.\r\n\r\nSufferers are confined to dark rooms, require 24/7 care, some unable to speak, feed themselves, tolerate light or sound, or even sit up.\r\n\r\nProposed actions will ensure people with Severe ME can safely access evidence-informed medical care and improve their chances of recovery.","additional_details":"We urge the government to implement both immediate and long-term support for those in desperate need.\r\n\r\nActions co-produced by: Severe ME Difrifol Cymru (SMEDC), Welsh Association of ME and CFS Support (WAMES), Action for ME (AfME), Long Covid Support (LC Support). \r\n\r\n1. Create a National Expert Group of health care professionals and people with lived experience to coproduce an All-Wales Strategy and Delivery Plan for ME and Long Covid, ensuring equity of service and compliance with NICE guidance (NG206 ME/CFS), across all ages and all severity levels.  \r\n\r\n 2. Appoint an All-Wales Clinical Lead(s) / Medical Consultant(s) for ME and Long Covid to coordinate care across health boards, reduce regional variation, support complex cases, guide training and treatment, keeping Wales in step with emerging research.\r\n\r\n3. Develop an ME/CFS and Long COVID Research Strategy to accelerate research in Wales through the Life Sciences Sector / Life Sciences Hub by 2027. \r\n\r\n4. Consider long-term sequelae in future pandemic planning/ preventive strategies, reviewing Infection Prevention Control (IPC) guidance.","state":"open","signature_count":147,"threshold_for_referral":250,"threshold_for_debate":10000,"created_at":"2026-08-05T16:08:39.492Z","updated_at":"2026-08-10T14:58:50.000Z","rejected_at":null,"opened_at":"2026-08-10T10:38:26.006Z","closed_at":"2027-02-10T23:59:59.999Z","completed_at":null,"moderation_threshold_reached_at":"2026-08-06T04:16:50.000Z","referral_threshold_reached_at":null,"referred_at":null,"debate_threshold_reached_at":null,"scheduled_debate_date":null,"debate_outcome_at":null,"archived_at":null,"submitted_on_paper":false,"submitted_on":null,"creator_name":"Shauna Chambers","rejection":null,"debate":null,"topics":[],"signatures_by_country":[{"name":"England","code":"GB-ENG","signature_count":32},{"name":"Wales","code":"GB-WLS","signature_count":115}],"signatures_by_constituency":[{"id":"W09000049","name":"Bangor Conwy Môn","signature_count":9},{"id":"W09000051","name":"Brycheiniog Tawe Nedd","signature_count":9},{"id":"W09000052","name":"Caerdydd Ffynnon Taf","signature_count":3},{"id":"W09000053","name":"Caerdydd Penarth","signature_count":9},{"id":"W09000055","name":"Ceredigion Penfro","signature_count":17},{"id":"W09000056","name":"Clwyd","signature_count":3},{"id":"W09000057","name":"Fflint Wrecsam","signature_count":1},{"id":"W09000058","name":"Gwynedd Maldwyn","signature_count":43},{"id":"W09000059","name":"Gŵyr Abertawe","signature_count":13},{"id":"W09000060","name":"Pen-y-bont Bro Morgannwg","signature_count":3},{"id":"W09000063","name":"Sir Gaerfyrddin","signature_count":3}],"signatures_by_region":[]}}}