Rebecca Esther (they/she)Reading things I wrote when I had particularly bad brain fog is such a trip. So many spelling errors and tangents. And the things I thought were funny then are often even funnier now, only because they don't make sense 😂
KattiTrefft mich, wie ich auf der Baustelle sitze und den abgepackten Supermarktsalat mit einem Löffel esse, weil noch kein Besteck da ist. #spooniethings
PöbelHörnchenWenn jetzt noch alle relevanten Personen mal die NICE Guidelines zu ME/CFS lesen, verstehen und anwenden würden, that would be great.
Bei mir hört's schon im Themenfeld "adequate and timely access to diagnosis" auf, geschweige denn auch nur irgendwas in Sachen regelmäßiger Kontrolle, Behandlung, oder auch nur schieres Symptom-Management. Ich hasse alles daran.
(Quelle/Auslöser: https://disabled.social/@tomkindlon/109712908390191632)
Tom Kindlon (@[email protected])
Attached: 1 image 🧵 "What Primary Care Practitioners Need to Know about the New NICE Guideline for #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome in Adults" (Dec '22) 2 of 4 authors are MDs Free https://mdpi.com/2227-9032/10/12/2438 I thought this was very good. Will post extracts My overview: Paper has lots of useful points & also helpful overall to show how the UK NICE guidelines for ME/CFS have changed dramatically from the 2007 version, with the updated approach being much more sympathetic regarding helping patients
Tom Kindlon21/
“It is helpful when you can help take care of my physical needs, so that I can focus on meeting my emotional needs. For example, when you offer to drive or do the dishes, you just saved several of my spoons so I can use them elsewhere in my day. My spoons are my lifeline. Please support me in how I use them”
#spoonie @spoonies #spoonies #spoonielife #SpoonieThings #spooniesupport #chronicillness #chronicallyill
👽also, a few more hashtags that i want to be associated with here on, because i saw people doing this, too & it might be helpful to find each other:
#chronicillness #chronicallyill #chronicPain #disabilities #spoonie #spooniethings #invisibleDisabilities :)
i love that so many people have found my profile already, so happy !! /gen
twelve mice a stirrin'legitimately thought pemdas was a continuation of post exertion malaise and was trying to figure out the das part. whooooops.