Adam
@abrokenbattery
“It made me much worse… Most people I know with ME have exactly the same experience with it.” Annette Barclay, a patient with #MEcfs describing her deterioration following Graded Exercise Therapy.
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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...
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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 afrai...
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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 t...
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Dr Charles Shepherd (@meassociation.org.uk) explains how in the 80s and 90s psychiatrists claimed #MECFS was due to “deconditioning” and “abnormal illness beliefs”. Graded exercise therapy made many patients worse, with some ending up in wheelchairs. It was only removed from NICE guidance in 2021.
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.
“They’re in a darkened room, they can’t tolerate light or sound… some are even tube fed. They’re so unwell, you almost can’t fathom it” Former Team GB rower @oonagh_cousins on people with very severe #MECFS and #LongCovid and the importance to advocate for those who can’t.
“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.
Clip 3 BBC Politics North: Luke Akehurst MP says it’s “shocking” that #LongCovid services are being closed when ~2 million people live with the condition and about half consider themselves disabled. Covid is “not yesterday’s problem”, it is still causing events to be cancelled.
“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
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
“They’ve had their lives completely demolished by this illness.” Millions are living with #LongCovid while society has moved on. Former Team GB rower @oonaghcousins.bsky.social developed #MECFS following Covid and had to retire.
BBC Morning Live covered the new £4.75m UK government funded #MEcfs genetics study yesterday, which will sequence 6,000 DNA samples as part of the wider DecodeME project. Unfortunately, Dr Oscar Duke said Chronic Fatigue Syndrome is “probably the best way to describe” the illness.
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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