WAMES

OT Abby explains why standing costs people with energy-limiting conditions more than you think and how useful a perching stool can be in many areas of the house. "Sit down to do more" tinyurl.com/35ber79a

A look at why the treatment LDN helps some people with ME/CFS and why it might never be an effective treatment on its own. Robert Graysman says: "LDN can be part of a layered approach. It is rarely the complete answer when the whole problem is structural." tinyurl.com/3yv9w5fx

Accessibility is esntl for creating more inclusive spaces for disabled ppl & shd never be considered a luxury or an afterthought says Disability Wales. Building accessibility from start is often more cost effective than fixing barriers later. It’s everyone’s responsibility #GAAD

NHS Digital England now features a SNOMED CT UK code for very severe ME/CFS. It is a contractual req for all NHS HC providers in England (not in Wales) to use SNOMED CT UK for capturing clinical terms, inc dx, within electronic patient record systems tinyurl.com/3wwz9xah

People in Wales who get Continuing Health Care can now use it to employ Direct Payments. tinyurl.com/mwa7dm9a Easy read version. tinyurl.com/yxu5d4ny

PRIME ME/CFS Research Involvement Hub has been launched. Applications are invited from UK residents with ME/CFS & Long COVID, carers, family & supporters to work with researchers to shape & influence research studies. No previous research experience needed tinyurl.com/bdx2wvcy

OMF reports that its large-scale biomarker project, BioQuest, has begun testing on all 1000+ BioQuest sample. Additional testing in Montreal will reveal critical immune system patterns and inflammatory markers, and validate existing findings. tinyurl.com/mrpx645s

ICE - In Case of Emergency - 'Me & my health', NHS Wales template helps u record basic info abt yrself & yr condition, in case u can't communicate effectively in an emergency. Download it or email for a pack to be sent to you. Display on fridge etc tinyurl.com/5xpxbctp

OMF briefly explains about subtyping in ME/CFS and the importance for helping guide treatments. OMF’s large-scale biomarker project, BioQuest, is working to incorporate subtype identification into its study. omf.ngo/subtyping/

MERUK reports on research showing similarities in symptoms of long COVID & Post-Acute COVID Vaccination Syndrome. "What is interesting is the inclusion of post-exertional malaise, hallmark feature of ME/CFS; and shortness of breath, which is not....... tinyurl.com/5a9zty99

Today is Global Accessibility Awareness Day. Disability Wales invites us 2 finish sentence: 📷 'Accessibility means…' Share yr response below or make yr own image & we’ll share with DW to hilite why a11y matters 2 disabled ppl, inc pwme. #GAAD #Accessibility #DisabilityWales

Webinar: Dr Leonard Jason will speak abt brain inflammation, cognitive dysfunction & patient-centered research in ME/CFS. Inc a look at BIC’s unhide® pacing questionnaire & tracking platform. 📷 Thurs May 21st, 2026 📷 8pm UK time Register in advance shorturl.at/fj3r5

Movement for good Health & Wellbeing special draw - Nominate WAMES to win £5,000. All previous 2026 nominations have been carried forward. Nominations open between 11-24 May. Please help us by reposting. Charity number 1144534 tinyurl.com/4s9nfnv3

Emma in Carmarthen has EDS, long COVID & heart problems. Her trained support dog enables her to work part time. He presses access buttons & opens doors, retrieves dropped items incl her mobile phone, gives her confidence & makes her disability visible. tinyurl.com/3jcbvun6

A French study in2 sleep in ME/CFS used a wrist accelerometer, sleep diaries & functional scales. They found under real-life conditions ppl with ME/CFS exhibit poor sleep quality & unstable Sleep Efficiency which fluctuates.... tinyurl.com/5xawczc6

TUC evidence to Timms Review into PIP shows unemployment rate for Disabled people is 8.8%, highest since before pandemic, 4.3% for non-disabled people. Figures are worse for young Disabled workers: an unemployment rate of 24.2%,12.2% for those not Disabled tinyurl.com/5ebj5cnp

Study found ppl with FM & LC show reduc brain network flexibility & inability 2 recover baseline brain states after mild exertion, but underlying mechanisms differ. "[Our findings cd offer] potential biomarker 4 central dysregulation across chronic conds" tinyurl.com/4crwy7pw

Hynt - Welsh scheme helping ppl with disabilities access theatres & arts venues. It provides up-to-date access info to help u plan yr visit & free ticket 4 PA/carer. Free membership 4 holders of certain benefits, social care packages or disability certs hynt.co.uk

Prof Anthony Komaroff presents "Causes of Symptoms & Persistence in ME/CFS & Long COVID," where he examines mechanisms by which biological abnormalities in ME/CFS & long COVID generate symptoms & why those symptoms persist. [38 mins] +Transcript +Chapters tinyurl.com/m8w8f7ta

Access Card, or Nimbus Card, is like a disability passport. It shows, in symbols, your disability/impairment. Participating companies, venues etc can easily see the support you need. Costs £15 for 3 years. Can also be used abroad. tinyurl.com/edvvxa8