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Adam

@abrokenbattery

TW: Assisted Suicide Clip from German TV. Kim has #MECFS and describes how her illness has progressed, leaving her bedbound and sensitive to light and sound. At 25, she talks about her decision to apply for assisted suicide, saying she can no longer live like this.

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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

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Clip from German public broadcaster ZDF’s science programme MAITHINK X – Die Show discussing claims made by the Gupta Programme, a brain-retraining approach for ME/CFS.

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6 years on from Covid, BBC Look North highlights the ongoing impact of #LongCovid. Reporter Cathy Minton says it’s personal, her husband Tom hasn’t improved in a year. He still can’t care for his toddler or go for walks. @franhaddock.bsky.social says new people continue to get long Covid.

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George Monbiot describes the treatment of #MECFS as “The Greatest Medical Scandal of the 21st century”. Repost of the introduction to my 27-minute explainer video for #MEAwarenessMonth — now optimised for phones.

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“Having ME is not a choice.” A 37-year-old woman with severe #MECFS says the disability assessment process in Switzerland is “simply dangerous and unsuitable for people like us”. Clip from Swiss TV on severe #MECFS.

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Dr Charles Shepherd (@meassociation.org.uk) explains how in the 80s and 90s psychiatrists claimed #MECFS was due to “deconditioning” and “abnormal illness beliefs”. Graded exercise therapy made many patients worse, with some ending up in wheelchairs. It was only removed from NICE guidance in 2021.

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Clip 2 from BBC Politics North: Dr Margaret O’Hara of Long Covid Support warns the condition is being “swept under the carpet” as clinics in the North East are set to close. Long Covid expert Dr Rae Duncan says Covid is not over and cases of long Covid are rising.

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“They’re in a darkened room, they can’t tolerate light or sound… some are even tube fed. They’re so unwell, you almost can’t fathom it” Former Team GB rower @oonagh_cousins on people with very severe #MECFS and #LongCovid and the importance to advocate for those who can’t.

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Brief clip: Whoopi Goldberg raises concerns about #LongCovid on The View. She says one of her employees’ mothers has the condition and can no longer go out to do her job, so now works from home. She also raises concerns about the CDC.

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Caroline Kingdon speaking about functional impairment and mortality in #MECFS Biobank research has shown people with ME/CFS to be more functionally impaired than people with MS. And between 2001–2016, ME/CFS was mentioned on 88 death certificates in England and Wales.

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