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Adam

@abrokenbattery

BBC Morning Live addresses complaints after Dr Oscar Duke said that Chronic Fatigue Syndrome was “probably the best way to describe” the illness. Feedback from viewers outlines how it trivialises the illness, is just one symptom, and it does not reflect the reality of #MECFS.

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Hearing the stories of people with #MECFS who took the Decode ME results to their doctors and for the first time were believed is incredibly powerful. Sonya Chowdhury CEO of Action for ME on BBC Lifeline and how they are building on this work to move closer towards treatments.

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Darren Parkinson (@greendarrenshipley.bsky.social) says #LongCovid has “completely devastated” his life. His body feels “poisoned”, the fatigue is 24-7 and overwhelming. He spends most of his time lying down and can only shower once a week.​​​​​​​​​​​​​​​​

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“Waking up, it’s like you’ve been hit by a truck. Everything’s shaking, vibrating internally. My brain feels inflamed, it’s like you’ve got a concussion.” Rhi has had #MEcfs for over 20 years.

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“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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“It’s been devastating… it’s capsized my life as a mother.” Jane had to give up her 18yr career to care for her child with #LongCovid MP Jo Platt, who has #LongCovid and #MECFS warns we’ve stopped counting cases so don’t even know the extent of the problem. Clip from ITV News.

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“These people have been not only severely affected, but severely neglected by the National Health Service.” Dr Charles Shepherd speaking on UCB Radio about the lack of NHS care for people with severe ME/CFS during ME Awareness Week.

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“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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Dr @binitakane.bsky.social explains how a theory that #MECFS is caused by deconditioning and a fear of exercise permeated medicine and framed the illness as psychological. This led to the patients being neglected, gaslit, and some would say abused. Causing huge trauma for the community.

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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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