"The Tiger Who Came to Tea… and stayed" by @LongCovidAdvoc
https://www.thereforme.uk/p/the-tiger-who-came-to-tea-and-stayed
Many important issues in this article: the language gap, lack of research, and lack of clinical care for severe ME/CFS patients.
Bedbound patients have a harder time getting any type of medical treatment. They'll be excluded from most research studies. And on top of that, their symptoms and lived experience are often questioned.
#ThereForME guest blog is from @LongCovidAdvoc
They write about the experience of severe ME, exclusion from research and healthcare, and how the sickest patients are putting their health at risk to help others.
https://www.thereforme.uk/p/the-tiger-who-came-to-tea-and-stayed/
@mecfs #SevereME
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
UK Government:
Publication of the long delayed Delivery Plan for ME/CFS has been delayed again. Advocacy group #ThereForME give an update, saying they have been involved in the final stages and there is a plan, but no new funding.
From the #ThereForME series:
"The importance of understanding rest"
https://www.thereforme.uk/p/the-importance-of-understanding-rest
"This cultural dismissal of rest is especially harmful to people with ME or Long Covid, who must often rest for prolonged or indefinite periods. They face not only the impact of their condition, but also repeatedly justifying their need to adapt."
I thought this was good (as I'd expect from Oonagh & #ThereForME team):
"The importance of understanding rest: How my experience of rest as an athlete clashed with my experience of rest as a patient"
https://www.thereforme.uk/p/the-importance-of-understanding-rest
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@chronicillness
@spoonies
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From #ThereforME:
We’ve got a great guest blog today from Ella Barnard 
Ella writes about the hermeneutical injustice of ME, why the right words don’t exist and how we can find them.
https://www.thereforme.uk/p/the-hermeneutical-injustice-of-me
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid @longcovid
I missed this back when it was first published:
"The hermeneutical injustice of ME"
https://www.thereforme.uk/p/the-hermeneutical-injustice-of-me?r=17hcra
When Words Fail
"For me, one of the hardest parts of living with ME was the absence of a clear framework for describing and understanding it. The way I had once made sense of my body no longer applied …
I had no reference points for what I was experiencing."
