Att det i genomsnitt tar 8,5 ÅR att få den kroniska ME diagnosen (möjlighet att få sjukersättning) och undertiden får man felaktigt t.ex. utmattningssyndrom då man kan bli bättre.
Please do not. The most important thing is that they are held. And that progress is being made. 💕 I guess we are all impatient due to the catastrophic situation that we are in.
I am really glad that these meetings are held. I would so like to hear what is said though.
Kan tyvärr bara hålla med. Tortyr är rätta ordet. Kan berätta så mycket så att man inte tror att det är möjligt. Men det är det, tyvärr.
Samma här. Blir alltså värre av vård och omsorg, varje dag. ME är så otroligt dåligt förstådd så att dr inte kan hantera det och gör alltså mig sämre. (Har också sökt akut psykologhjälp sedan april 2023, men kan inte ta mig till t.ex. akutmottagning).
They are not good, is the short answer. Terrible actually. So embarrassing.
6/ 🔇Sensory safe environment🕶️ Provide private, soundproofed, and dimly lit rooms. Reduce smells, sensory overload, and physical contact to minimise post-exertional malaise (PEM). buff.ly/46wv5lD#SevereMEDay#MECFS#MyalgicEncephalomyelitis
the vocabulary of many of those who meet us who are affected. 3 short films about severe/very severe ME. www.dialogues-mecfs.co.uk/films/severe/#pwME#svmecfs#CanyouseeMEnow#MyalgicE#severeMEawarenessDay#severeMEday#verysevereMEday#severeME
special account for donations to biomedical ME/CFS research. The gifts go to the Open Medicine Foundation. Bank giro number: 136-7481 Swish number: 123 056 33 95 Thank you for reading information about this disease, which despite being so severe is missing from ->
who died of the disease. The inquest in the UK about ME sufferer Meave's death due to the ignorance and reluctance of the healthcare system to take in information. #Meaveinquest on X You can contribute to the research via RME - the Swedish National Association for ME patients, which has a ->