WAMES acts as a voice for people with ME/CFS, PVFS their carers, families and professionals. Website: https://nitter.cf/t.co/sL34tzYWHX Facebook and Instagram: WAMESMECFS
Wales
Joined April 2012
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Carers will have to wait until at least 2030 for an end to the unfair cliff edge in Carer’s Allowance. The DWP says it will take that long to build a new IT system — leaving carers at risk of overpayment recovery and even prosecution in the meantime.
tinyurl.com/y8y25b4h
The #MEAction Ptnr Caregivers Support Group invites caregivers who are spouses, partners etc of ppl with ME/CFS or LC (& assoc conditions) to connect, share & support each other via zoom - first Sun of month. 1 Nov @ 8pm UK Contact [email protected]
tinyurl.com/292h9yu2
Abby explains how an OT can help ppl with ME/CFS. LC & ME/CFS are about losing access to your life.
Occupational Therapy sees the doing, the meaning & energy cost.
It helps you redesign daily life so it’s sustainable, possible & connected to who you are.
tinyurl.com/mrxws4r4
DNS reports that Instagram, Facebook and TikTok have failed to act over animations that are spreading hate and lies about disabled people who receive benefits at an “alarming” rate.
tinyurl.com/4yvadt2p
Cort explores a study which found that about 40% of long COVID patients still had cytotoxic, or killer T-cells 18 months after catching COVID. He compares this to research into Epstein Barr Virus and abnormal T-cells in ME/CFS.
tinyurl.com/ycy534a6
Anil has been asked why he holds on when others with sev ME have died from suicide or euthanasia. He explains how altho he's severely ill life has been worse, he still wants 2 try 2 have a life b4 he dies & he wants "2 fight injustice done to pt community"
tinyurl.com/mu5enmwt
B&W report a case where the assessor refuse to provide a copy of the audio recording of their PIP assessment, even though they have a legal right to it. They suggest how to proceed if this happens to you, and invite you to share your experience with them.
tinyurl.com/ynafx3mh
A US group invites people with ME/CFS, FM & Long COVID to join.
Topic: Navigating the healthcare industry. Register in advance. Tues 3 Nov @8pm UK time.
tinyurl.com/2nnyw3pt
Anna explains diff of being a disability advocate at intl disability events which don't recog or cater 4 ppl with energy limiting conditions. "We remain largely invis within global disability movements, just as we're in wider world they're trying 2 change"
tinyurl.com/cfm5m2nx
Prof Rob Wüst, a researcher into muscle function in ME/CFS, tells Men's Health journal that ME/CFS isn’t abt being ‘out of shape’. Even a shower or a convo can trigger a crash hrs l8r. That’s post‑exertional malaise, hallmark of a serious, multi‑system dx
tinyurl.com/2jcf4d2c
Hear about the Signal study, which uses home based treatments to advance ME/CFS and LC research. Register in advance. 10 Nov @ 11pm UK
tinyurl.com/5e3sax7h
Dr Nancy Klimas talks about Mediator based treatment strategies in ME/CFS. An overview of treatment targets, current care and research directions. [53 mins] +Transcript +Chapters
tinyurl.com/c4krwcce
The Disability Poverty Campaign Group (DPCG) has sent a letter to the new Chancellor, Rt Hon John Healey, urging him to break the endless cycle of disability poverty and to rebuild trust between the community and the UK Gov.
tinyurl.com/3fdrwu4j
US neurologist Dr Ilene Ruhoy listens to ppl with ME/CFS who are struggling to be heard, because her brain tumour sxs were also not taken seriously by doctors. "One thing I’ve come to learn is that their defining sx is not "fatigue."
tinyurl.com/4d8s9xcm
Commissioner is inviting older ppl living in rural communities to share their views & experiences abt best things abt rural life, plus some of challenges & changes that would have biggest positive impact.
Help influence policy and support positive change.
tinyurl.com/3z2t7u9k
MERUK echoes the points about the need for research, made by Beth Dobbin when she wrote the PM. Especially the need for a cost-benefit analysis and ring-fenced funding, which have been consistently ignored by the UK Gov.
tinyurl.com/mr6c9mjw
Dr Jarred Younger is speaking at an Online symposium on the Neurology of ME/CFS on Wed 28 Oct. Begins 2pm UK time. Register in advance.
Also speaking: James Cox; Felipe Correra de Silva, Keyla Santos Guedes de Sá and Beata Godlewska.
tinyurl.com/vm7uav7p
Online Halloween activities:
Art Workshop Thurs 29 Oct @4pm UK Register here.
tinyurl.com/5bpbwhfh
A dramatic reading of H.G. Wells, Invisible Man, Sat 21 Oct @2am UK. Create an account: twitch.tv/corywysz
Steven’s spooky readings. Join anytime
tinyurl.com/y4ey3p5b
You can support ex Olympian Beth Dobbin in her campaign for increased ME research funding.
tinyurl.com/yc3sxss2
#ThereForME & AfME's MP briefing -Send this to your MP
Briefing: linktr.ee/ThereForME?lt_utm_…
Letter template tr.ee/t7FLOe0LPV
WG's COVID-19 pandemic review will not have stat powers 2 compel wit. 2 give evidence, says First Minister. Campaigners representing families who lost loved ones 2 Covid-19 have warned they'll not take part if wit. are'nt reqd 2 give evidence under oath
tinyurl.com/ykmzauh5
