The proportion of child disability living allowance (DLA ) claimants who are refused an award when they are reassessed for PIP after reaching age 16 has doubled in the last 2 years. B&W invites you to share your experiences as they work on a new guide to help members.
tinyurl.com/y2mwh37f
Cort explores research into problems with the connective tissues or, more accurately, with the extracellular matrix (ECM), which makes up the connective tissues in ME & LC. He looks at the pros and cons of various possible treatments.
tinyurl.com/yxu9k4un
OT Abby says PEM/PESE means cost of exertion is no longer dlvd at point of exertion. Instead, it arrives l8r.
Learning to read sigs involves noting cxt. "I can't cook is categorical. I can’t cook a full meal at 4pm after a high-demand pm without having rested 1st, is contextual"
tinyurl.com/ttdube24
DRUK challenges the Tories' desire to repeal the Public Sector Equality Duty, saying discrimination by public bodies is still rife. There's no evidence it causes social ills, the law needs to be strengthened as society no longer has a safety net to catch people who are at risk.
tinyurl.com/9nae864y
MERUK notes NHS Digital, England has agreed to a SNOMED CT UK code for v severe ME/CFS to add to ‘mild’, ‘mod’ & ‘severe’ ME/CFS. A parliamentary question has revealed that in England "There are currently no plans to develop a separate specification for severe & v severe ME/CFS"
tinyurl.com/2vht4e3v
Cofrestrwch nawr ar gyfer gweminar ME Voices Cymru ar ddydd Llun 29 Mehefin, 1230-1330, pan fydd BIP Hywel Dda yn rhannu sut y gall eu Gwasanaeth LC a ME/CFS gefnogi pobl sy'n byw gyda ME/CFS yn y 3 sir yng ngorllewin.
tinyurl.com/5y8btxpj [email protected]
In memory of Maeve Boothby O’Neill, by her mother Sarah
b.1994 ME. 2008 d. 2021
Maeve died too young. ME did not kill her. Medical neglect did.
Stop. Rest. Pace.
tinyurl.com/248t6fmt
Register now for the ME Voices Wales webinar on Mon 29 June, 1230-1330, when Hywel Dda UHB will share how their LC & ME/CFS Service can support people living with ME/CFS in the 3 counties of west Wales: Ceredigion; Carmarthenshire; Pembrokeshire. tinyurl.com/5y8btxpj [email protected]
Dr Nina Muirhead in April 2021. She thought we were at a 'fork in the road' then. Her contributions to the DHSC 'Plan for ME' have been sidelined since, while the numbers living with #ME #LongCovid are increasing indiscriminately.
This is how we are governed.
www.youtube.com/watch?v=dX4M...
OMF briefly explains the need to develop a diagnostic tool for ME/CFS that is both sensitive and specific.
www.omf.ngo/sensitivity-...
