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Adam

@abrokenbattery

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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Gabby Rudge-Cox caught Covid in 2021 and has been diagnosed with #LongCovid #MECFS #Fibromyalgia and #POTS. “I'm gradually getting worse and it just scares me that if it continues to decline, life is going to get even smaller.”

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Emma Shorter was told people who don’t recover from behavioral treatment for #MECFS have made the illness their personality. She was told not to meet other patients and to trust the therapist over her own body. She went from walking 4 mins a day to needing a wheelchair.

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12-yr-old Aveline loved trapeze and sports. Long Covid changed everything. “Within a day my entire life was flipped around… it’s been a constant battle against my own body.” “It’s really isolating. All my friends go to school together and I would give anything to be there.”

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What is #MECFS? A brief overview of symptoms, diagnosis and management based on the 2021 NICE guideline. It’s not being tired all the time, patients have an energy impairment that dramatically limits their activity.

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Emma has #LongCovid and slowly built up to working 30 hours a week over 3 years but had to take sick leave. She then got COVID again and is back to square one. Reinfection risks making Long Covid worse.

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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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Clip 2 (WDR German TV): Dr Astrid Weber from the Long Covid Clinic in Koblenz says ME/CFS cases have exploded since Covid. ME/CFS isn’t new — despite being around for decades, many doctors know little about it. She wants to educate them. It’s a physical, not a mental, illness.

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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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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’ve grown up with me always being ill and I feel that I’ve let them down because of that.” Andrea has lived with severe #MECFS for 33 years and is confined to bed nearly 24 hours a day. From BBC Lifeline: Action for ME

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