Adam
@abrokenbattery
#MECFS is a “medical” and a “social catastrophe.” — Jörg Heydecke, founder of Germany’s ME/CFS Research Foundation. One patient waited 19 years for a diagnosis. Another said she was told her symptoms were psychological and that she needed to get on with it.
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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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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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#MECFS mentioned briefly in yesterday’s parliamentary debate on EDS. Liz Twist MP highlights EDS overlaps with ME/CFS, MCAS and PoTS, and Minister Sharon Hodgson says the NIHR is already expanding its work on overlapping conditions including ME/CFS and post-viral syndromes.
“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.
TW: Very distressing content Clip from Austrian TV report on Samuel, who developed severe ME/CFS following Covid and chose assisted suicide on his 22nd birthday. Includes a brief interview with him before his death. #MECFS #LongCovid
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
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.
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.
Clip from Radio New Zealand: A former city councillor describes the impact of #LongCOVID. Going from a busy, active life to, at her worst, living on her couch unable to walk, using a commode beside her.
Nikki Proctor on BBC Radio 4’s Feedback says she was surprised Amol Rajan didn’t raise #MECFS with Suzanne O’Sullivan on his podcast, after O’Sullivan said #LongCOVID was largely psychosomatic, given the “backlash and criticism of her position” on #MECFS.
Edited Clip from BBC inside science ME/CFS diary: Jo @therealmecfs.bsky.social talks through a week with #MECFS: showering once a week, rationing mental and physical energy, pacing carefully, and experiencing post-exertional malaise if she exceeds her limits.
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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