An interview by David Tuller DrPH with patient advocate Anil van der Zee about his video (embedded at link) titled "The Prison of M.E." on living with severe ME made for the ME Awareness Day.
"Anil was a dancer before he got sick. Now he makes art through his images and words. I am constantly amazed at how active and engaged he manages to be with his phone as his instrument. Here is The Prison of M.E., a haunting video he posted for World ME Awareness Day on Sunday, May 12th (two days ago), about life as a severe patient."
“Severely affected persons must be shielded from all stimuli and are completely in need of care - up to artificial nutrition. The disease burden is so high that the average quality of life is lower [than] MS, cystic fibrosis, diabetes mellitus, epilepsy, AIDS or cancer”
“However, pacing in ME/CFS patients with a very high degree of severity can hardly be implemented or not at all, as even basic and vital activities such as eating or minimal movements can lead to a deterioration of the condition.”
Behind closed doors in the dark, Margot, @StillViv, @DaschaEliza, Ilse, @AnilvanderZee , Lara talk about life with severe ME. @LouCorsius talks about Céline.
@tomkindlon@mecfs#Austria is a small country with a small pop of #pwME cf. to UK or Germany, but their charities have stepped up to the plate. UK M.E. charities still drastically fail those of us with #SevereME. They seem scared of appearing too radical to the Establishment. Too much done behind closed doors. Too little involvement with our ground-up causes, needs & wishes. Dare I say perhaps UK charities seem too complacent? I love this #Austrian#AwarenessRaising ad: herrlich!
"Teach ME Treat ME will be here in the next few weeks! While many of you are preparing to host medical education events, we know that thousands of you will be participating from home!
We are beyond excited to share the Show Up From Home Toolkit! This toolkit lays out an array of ways you can take action from home based on your energy level."
"… we invite you to witness the profound narrative of Sean Henneberry, a brave soul who has been navigating the turbulent waters of ME/CFS and Postural Orthostatic Tachycardia Syndrome (POTS) since his early teens."
Longitudinal cytokine and multi-modal health data of an extremely severe ME/CFS patient with HSD reveals insights into immunopathology, and disease severity
Proposed Framework for Personalized Severity Assessment in ME/CFS to Capture Variation in ME/CFS Severity and Life Impairment across Patients and Time.
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"For many doctors, being confronted with a case of very severe ME will be their first experience of such a case. This may lead to a form of denial, whereby the doctor has to find another explanation for the presentation". Dr Speight discusses recent cases.
I decided when sending a card to Millie, I would include a couple of interesting papers which show a 20° tilt is enough to cause problems in ME/CFS & separately that orthostatic intolerance wasn't found to be related to deconditioning.