Adam
@abrokenbattery
“They sometimes aren’t supported by their families. They almost always aren’t supported any longer by their friends.” Caroline Kingdon, on the profound isolation experienced by people with severe #MECFS.
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TW: Very distressing content Clip from Austrian TV report on Samuel, who developed severe ME/CFS following Covid and chose assisted suicide on his 22nd birthday. Includes a brief interview with him before his death. #MECFS #LongCovid
The CDC made a public awareness ad about #MECFS in 2007. I’m not aware of a similar public health campaign since, despite increasing numbers linked to long Covid and the lack of awareness that exercise can make people worse.
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Clip 2 from Austrian TV report about Samuel ME/CFS was largely ignored in Austria until Covid. The hallmark symptom is that exertion can make the illness worse. Many doctors are completely unaware, even though patients have been saying this for decades. #MECFS #LongCovid
Really good explanation of Post-Exertional Malaise (PEM), the hallmark symptom of ME/CFS, and why pacing activities is so important. Clip from German TV science program.
Clip from Radio New Zealand: A former city councillor describes the impact of #LongCOVID. Going from a busy, active life to, at her worst, living on her couch unable to walk, using a commode beside her.
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.
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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