Joined April 2012
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1,031 Photos and videos
Jun 12
OT Abby says PEM/PESE means cost of exertion is no longer dlvd at time. Instead, it arrives l8r.
Learning 2 read sigs involves noting cxt. "I can't cook is cat. I can’t cook a full meal at 4pm after a high-demand pm w/o having rested 1st, is contextual"
tinyurl.com/ttdube24
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Jun 12
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
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Jun 12
MERUK notes NHS Digital, England has agreed to SNOMED CT UK code for v severe ME/CFS to add to mild, mod & severe ME/CFS. Parliamentary question has revealed in England "There are currently no plans to develop a separate spec for severe & v severe ME/CFS"
tinyurl.com/2vht4e3v
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Jun 12
In memory of Maeve Boothby O’Neill, by her mother Sarah.
b.1994 ME.2008 d.2021
Maeve died too young. ME didn't kill her. Medical neglect did.
Stop. Rest. Pace.
tinyurl.com/248t6fmt
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Jun 12
The proportion of child disability living allowance claimants who are refused an award when they are reassessed for PIP after reaching age 16 has doubled in last 2 yrs. B&W invites you to share your experiences as they work on a new guide to help members.
tinyurl.com/y2mwh37f
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Jun 12
Register now for 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; Carm; Pembs. s
tinyurl.com/5y8btxpj mevoiceswales@gmail.com
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Jun 12
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 mevoiceswales@gmail.com
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Jun 11
OMF briefly explains the need to develop a diagnostic tool for ME/CFS that is both sensitive and specific. omf.ngo/sensitivity-vs-speci…
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Jun 11
DRUK challenges Tories' desire to repeal Public Sector Equality Duty, saying discrimination by public bodies is still rife. There's no evidence it causes social ills, law needs to be strengthened as society no longer has a safety net to catch ppl at risk
tinyurl.com/9nae864y
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Jun 11
MERUK hilites recent US research that encouraged increased use of AI & shift towards molecular understanding of ME/CFS. They suggest
cause of ME/CFS is likely to be a complex interaction between multiple factors including genetic & epigenetic variations
tinyurl.com/4hjrkav5
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Jun 11
Online support group: A US group invites people with ME/CFS, FM & Long COVID to join. Topic: My Illness is Real and So Am I: Successfully Facing Invalidation, Prejudice and Discrimination. Tues 16 June @8pm UK time. Register in advance
tinyurl.com/5n7eucey
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Jun 11
Oonagh Cousins writes about the importance of understanding rest and how her experience of rest as an athlete clashed with her experience of rest as a patient.
tinyurl.com/dd79486f
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Jun 10
Nearly 3m pPL are currently juggling paid work & care in UK.
When they don’t have a carer friendly employer it can even become harder to cope. Every day 600 ppl have to leave their paid jobs to care.
Read Carers UK latest research to find out more:
tinyurl.com/2zae82ep
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Jun 10
An app for young carers in Wales offers: digital identity card; a way to ping your school or college; contact list for support network; useful info; and local discounts are coming soon. Download AiDi and apply online. aidi.cymru/en/
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Jun 10
OMF's CTN Lite survey identified post-exertional sx worsening & mitochondrial dysfunction as pwme's high priorities for research. Other top prios were: overall energy, cog dysfunction, neuroinflam & immune dysregulation. Webinar 22 Jun will explain more
tinyurl.com/2s3kn27x
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Jun 10
Fred Rossi taught Cognitive Behavioural Therapy (CBT) and he saw it help many, before Long COVID made him a patient. He challenges it’s value for LC and ME. "Asking it to cure ME/CFS...is a category error, like prescribing a splint for an infection."
tinyurl.com/2s3kn27x
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Jun 10
Fred Rossi taught Cognitive Behavioural Therapy (CBT) and he saw it help many, before Long COVID made him a patient. He challenges it’s value for LC and ME. "Asking it to cure ME/CFS...is a category error, like prescribing a splint for an infection."
tinyurl.com/4mfcd8d7
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Jun 10
Watch the 3rd Blue Sunday Online Concert for ME which took place in May. It is free to watch but donations will be welcome for research into ME at Edinburgh Uni, led by Prof Chris Ponting. You can also see the concerts from previous years.
tinyurl.com/mnn55737
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Jun 10
A MERUK funded study found there were differences in specific proteins associated with disease in 2 patient groups - those with ME/CFS & POTS & those with severe ME/CFS. This gives insight into biological processes behind why ppl with ME/CFS differ so much
tinyurl.com/ens5nys2
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Jun 9
9/6 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 Cymru.
tinyurl.com/5y8btxpj mevoiceswales@gmail.com
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