WAMES

WAMES acts as a voice for people with ME/CFS, PVFS their carers, families and professionals.
Website: and Instagram: WAMESMECFS

[WAMES @WAMESMECFS]

Online Halloween activities:
Art Workshop Thurs 29 Oct @4pm UK Register here.
https://t.co/T0DEXYSyM4
A dramatic reading of H.G. Wells, Invisible Man, Sat 21 Oct @2am UK. Create an account: https://t.co/yB4COJRyIg
Steven’s spooky readings. Join anytime
https://t.co/M6v5GOVqfX

[WAMES @WAMESMECFS]

You can support ex Olympian Beth Dobbin in her campaign for increased ME research funding.
https://t.co/mwR2P2TFzC
#ThereForME & AfME's MP briefing -Send this to your MP
Briefing: https://t.co/7E8MmAgieV
Letter template https://t.co/0aikp3CbL2

[WAMES @WAMESMECFS]

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
https://t.co/dPQH18wrUY

[WAMES @WAMESMECFS]

ITV Border News reports on the devastating impact of ME/CFS on farmer Andrew Jackson in Cumbria, who struggles to  work on the family farm, with physical exertion often causing days of debilitating symptoms. [4 mins]
https://t.co/JW2nz62uT8

[WAMES @WAMESMECFS]

MERUK highlighted PoTS Awareness Day, 25 Oct. PoTS is a subset of the broader category of orthostatic intolerance, where symptoms are mainly experienced when upright. Some people with ME/CFS may also have PoTS as a co-existing condition.
https://t.co/ySsEZH68mh

[WAMES @WAMESMECFS]

The UK Covid inquiry is guilty of “a deep disservice” to disabled people neglected in their own homes during the pandemic by failing to examine their experiences in detail in its crucial report on the social care system, say campaigners.
https://t.co/rgORIltLpr

[WAMES @WAMESMECFS]

4th PRIME online workshop Wed 28th Oct 2-5pm GMT will cover:
why neurology has become such an important area of research in ME/CFS;
how findings are shaping future studies;
their potential to improve dx & identify therapeutic targets.
Register in advance.
https://t.co/6lf2yLUGHi

[WAMES @WAMESMECFS]

MERUK shares some of the responses to their recent survey about the experience of Orthostatic Intolerance.
https://t.co/4wHGzWIisr

[WAMES @WAMESMECFS]

Nick says:
I’ve long had a nagging feeling that, for some advocates of the mind-body model of ME and Long Covid, the desire to help patients is secondary to the desire to test, validate, and promote the model through these conditions. And I don’t like it.
https://t.co/ufb01YiSiN

[WAMES @WAMESMECFS]

Prayati says that once we learn that it is not just one type of activity that can overload us, but also that a collection of otherwise manageable activities can trigger a crash, we need to learn how to communicate our limits to those around us.
https://t.co/1nQnpDK5jg

[WAMES @WAMESMECFS]

Channel 4 prog The Experiment doesn’t pull its punches. From outset it draws strong parallels between Nazi ideol which saw Disabled ppl as unproductive, costly & burdensome & polit policies & attitudes 2wards Disabled ppl in UK 2day
https://t.co/sMaKO4D5he
https://t.co/yuGmSj0pY1

[WAMES @WAMESMECFS]

OT Abby says that when illness takes away the old routines, it can feel like the meaning went with them. But the values that mattered weren’t stored in the activity, they’re still in you. The work is finding new forms that can carry them.
https://t.co/fcYKTvjp0x

[WAMES @WAMESMECFS]

Dr Rob Wust talks about Delineating the physiology of skeletal muscle fatigue and post-exertional malaise in long COVID and ME/CFS [25 mins] +Transcript +Chapters
https://t.co/NiZ6XkPCK6

[WAMES @WAMESMECFS]

Cardiff Airport’s Special Assistance team has won Airport category at International Travel For Every Body Awards 2026. They beat a strong field of finalists inc Liverpool's John Lennon, Manchester, US's Orlando Intl & Canada's Victoria Intl
https://t.co/KmbzpOK3u8

[WAMES @WAMESMECFS]

MERUK note that a review paper found ppl with ME/CFS generally had lower cortisol levels, when measured at different times of day. This suggests stress-hormone system is less responsive in ME/CFS i.e. ability to deal with or regulate, stress may be reduced
https://t.co/ui80OoHDXs

[Ataxia_aware CIO 1184030 (previously Ataxia_and_me @Ataxia_aware]

@WAMESMECFS #DNA the code for life

#RareDisease #StrongerTogether

[WAMES @WAMESMECFS]

A report from an industry-led accessibility group says there is ‘much more to be done’ to provide Disabled passengers with better safeguards when flying, a year after a review led by Tanni Grey-Thompson.
https://t.co/TxbGomB2U5
UK Gov changes:
https://t.co/vQnWAnEiNB

[WAMES @WAMESMECFS]

Cort explains PrecisionLife focuses on identifying biol causes driving subsets of ME/CFS & LC, & targeting txs to them. Its Long COVID DNA Wellness educational report requires only saliva sample & provides info abt yr genetic inheritance Cost:$495 (£369)!!
https://t.co/08XWrFhxTu

[WAMES @WAMESMECFS]

A treatment’s mechanism of action is the specific biological process by which it produces its effect in the body. OMF explains this component of the Data Analysis stage of the research process when looking for effective treatments for disease.
https://t.co/z9aeAJ4yVD

[WAMES @WAMESMECFS]

Fred considers all the ways he has dealt with grief in the past when he has lost a cat: walking; working; music. "Illness took the walking first. Then it took much of the rest." He tried writing a song to his cat, but it wasn't the same as walking.
https://t.co/nmDy4BCTQl