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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Lotte has lived with #LongCOVID for 6 years. At her worst she spent 22 hrs a day in bed and was unable to hold a conversation. She worries about her future as the Dutch government doesn’t treat it as a priority and not enough is being done to help her take part in society again.
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.”
Professor Chris Ponting on how findings from the largest genetic study in #MECFS show “there is an organic disease called ME”. “We’ve had letters from GPs saying we have changed their minds” Clip from Hope 4 ME & Fibro NI Collaboration
Professor Chris Ponting on the 116 blood molecule differences his team found in people with #MECFS “This is not a psychological disease” people did not alter their blood molecules just to “spook the psychiatrists”. Clip from Hope 4 ME & Fibro NI 2026
“To fight for ourselves is dangerous.” @maggieboxey.bsky.social has #MECFS following a suspected Covid infection. In her TEDx talk, she explains that after speaking to Congress, she spent several days in a crash and that if she’s not careful, it could permanently lower her baseline.
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.”
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.
I’ve just donated to @DavidTuller1.bsky.social’s crowdfunding campaign again. I really hope his work investigating #MECFS, #LongCovid can continue. These highlights sum it up… Everything they’ve done for 30 years is not only “bad science” it’s actually been “really harmful” to people.
Post exertional malaise (PEM) is the hallmark symptom of #MECFS It’s not fatigue following activity. It is a dramatic deterioration and worsening of symptoms. Short video explainer - triggers, symptoms, and management. Repost for the last day of #MEAwarenessMonth
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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