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Adam

@abrokenbattery

Psychiatry has caused a lot of delays and damage in the field of #MECFS. A lot of work needs to be done to undo harm from theories such as patients excessively resting, being afraid to exercise, or perpetuating their illness. Dr Nina Muirhead, interview in The Times (2020)

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NIH Director Jay Bhattacharya says patients with ME/CFS, long COVID, vaccine injury and chronic Lyme are often gaslit and told their symptoms are psychological, making them feel crazy. He’s told NIH staff he wants to invest in finding real answers for these conditions.

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Gabby Rudge-Cox caught Covid in 2021 and has been diagnosed with #LongCOVID #MECFS #Fibromyalgia and #POTS. Her husband had to give up his job as a policeman after a Covid infection as well ”it has ruined our lives”.

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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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“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

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Highlights from BBC Radio Gloucester. Helen Stout, who has lived with ME since 2020, and Clare Ogden from @actionforme.bsky.social say the UK government’s £4.75m research investment is welcome, but a ‘drop in the ocean’.

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Adam

Covid has led to an increase in #MECFS. In Germany, numbers have gone from ~250,000 to over 600,000 since the start of the pandemic. It’s been around for decades, yet many patients still aren’t believed and are given harmful advice by doctors, as one patient reports.

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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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#MECFS “is a real hidden illness and it can shrink lives” Fliss and Rob Shepley spoke on BBC Radio Merseyside about their upcoming Land’s End to John O’Groats cycle ride to raise funds for the ME Association. They are taking on the challenge for their daughter, who lives with #MECFS

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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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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.

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