Adam
@abrokenbattery
“So what you’re really telling us is that everything we’ve been taught in our training as nurses is wrong for this condition.” Dr Nigel Speight describing a nurse’s reaction after he explained how to care for a patient with severe #MECFS.
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“This is not a life, it is miserable. So how do I feel? Not even human anymore.” A 36-year-old woman with severe #MECFS confined to bed, on oxygen and a feeding tube, unable to tolerate light, sound or vibrations. Clip from Swiss TV
Congratulations to @sharonhodgsonmp.bsky.social on her new role Minister for Public Health and Prevention. Sharon has been a strong supporter of people with ME/CFS and has spoken in a number of parliamentary debates. Here are some highlights from a debate in 2019.
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Intro to a 1993 documentary on #MECFS When medicine doesn’t understand an illness, patients are often mistreated. New discoveries challenge existing beliefs, but in the meantime, for those suffering, life can be a living hell.
Clip: Dr @binitakane.bsky.social explains how ME is an energy-limiting illness. The hallmark symptom, Post-Exertional Malaise (PEM), means even normal activities can trigger a worsening of symptoms. Some of her patients have to choose between a shower or preparing a meal that day.
“The injustice of it, I couldn’t believe it.” Former Team GB rower @oonaghcousins.bsky.social talking about the #MECFS “scandal” where patients were told they were deconditioned and needed Graded Exercise and CBT. It is the “opposite of what they needed” and that legacy still runs “super deep”.
Edited clip from German TV: 14-year-old Philipp developed ME/CFS following a Covid infection. He hasn’t been to school in a year and barely sees his friends. His mother says we have never felt so helpless in our entire lives. #MECFS #LongCovid
BBC Wales Today. Carer and campaigner Rob Messenger, who has two children with #MECFS in their 30s, says there are no specialists to turn to and describes care for Severe and Very Severe ME in Wales as a ‘desert’.
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