Very severe #MECFS can cause profound suffering, extreme disability and life-threatening symptoms. Many are completely dependent on care, yet still face misunderstanding and inappropriate management. #SevereMEAwarenessWeek
Adam
@abrokenbattery.bsky.social
Severe ME patient currently on a 10% battery, the gas goes out more than I do. I also compile ME/CFS Awareness videos. https://linktr.ee/abrokenbattery
“ME is a very dangerous & debilitating condition.” Karen Gordon’s mum, explains why travelling 100 miles for an assessment could cause a serious relapse. Karen needs tube feeding & would be better off at home but is effectively trapped in hospital. #MECFS #SevereMEAwarenessWeek
As Rod Liddle has died, I notice this column I wrote in 2019 about his attacks on people with M.E. is on the most read again. Rebekah Brooks, of News UK, described Liddle today as “provocative”. In reality, he spread lies about very sick people for cash. www.theguardian.com/commentisfre...
Rod Liddle vilifies disabled people. I’m tired of the hate. We all should be | Frances Ryan
Whether it is ME patients or another target, huge swathes of the media have normalised hatred of minorities for years, says Guardian columnist Frances Ryan
theguardian.com
It’s Severe ME Awareness Week. Here are some highlights from the explainer video on severe and very severe #MECFS I made in 2021. Experts discuss the lack of medical care, swallowing difficulties and tube feeding often being delayed until it becomes life threatening.
“It can feel like if you’ve run a marathon, you collapse onto the floor. That’s what it feels like.” Jo Porter describes living with ME after 20 years with the illness, followed by footage from the #MillionsMissing protest in Oxford in 2016. #MECFS
"Covid has just ruined my life and the lives of so many other children" Samir, 16, has seen little improvement 5 years after developing #LongCovid. He is still disabled, housebound, and wheelchair-bound. The only medical help has been private because there was nothing on the NHS.
"This is not rare. This is one of life's worst diseases." Professor Chris Ponting speaking about harm from graded exercise therapy and hospital care, and how patients have been let down for decades because #MECFS was wrongly thought to be psychological. (Clip from 2024)
No.03 in our 101 series covers The Biopsychosocial Model. A vital topic as much of our clinical care is BPS. Lack of progress in care, research & treatment rests on this theory. Yet, it's a complex topic, so we have created an accessible article AND a 1-page visual summary. Link 👇
🇳🇱 This paper from Rob Wüst's group was published yesterday in Nature Communications. They found several differences between ME/CFS and LC patients and deconditioned participants who underwent 60 days of bed rest 👇
ME/CFS Science@mecfsscience.org · last yr.1) Dutch researchers compared muscle biopsies of ME/CFS and Long Covid patients to healthy participants who underwent 60 days of strict bed rest as part of a NASA study. A brief overview of how ME/CFS and LC differed from deconditioning...
Councillor Bill Armer, whose late wife had #MECFS, said patients were given a label, but “nothing at all to follow up”. After hearing evidence at a Kirklees Council meeting, he said “I don’t think we’ve made much progress in the last 15–16 years.” He was “disappointed” and “concerned”.
“He has difficulty with chewing and swallowing… it’s a struggle to make sure that we’re getting the right nutrition, the right hydration into him… basically to be keeping him alive.” @karenlhargrave.bsky.social on caring for her husband James, who developed very severe ME following COVID. #MECFS
Arguments for a biological cause are “mocked” and “overwhelmed”, science is “ignored”, and clinicians with success treating ME are “hounded out of business”. The Countess of Mar speaking about a “school of psychiatry” in the House of Lords, 2010. #MECFS
“On my bad days I can’t walk properly. I can just about get out of bed. Some days I can just about lift my arm up.” 16 year old Olivia Cole talks about living with ME on Good Morning Britain in 2015. #MECFS
My 27-minute #MECFS Medical Scandal Explainer video has now passed 300,000 views on YouTube. YouTube’s AI summary has analysed over 3,100 comments.
"They perpetuated a real misunderstanding around the world" about what #MECFS is. @davetuller1.bsky.social speaking on the South African investigative programme Carte Blanche about the impact of the discredited PACE trial in 2017.
"This is serious neglect, and in some situations, abuse... As a former child protection social worker, I've seen some harrowing things and the way some people with severe ME are treated is up there.” Sonya Chowdhury, CEO of @actionforme.bsky.social #MECFS
Adam@abrokenbattery.bsky.social · 3w ago“ME is a really horrific illness… Many people tell us that ME steals their lives quite literally.” Sonya Chowdhury, CEO of @actionforme.bsky.social, explains Myalgic Encephalomyelitis (ME) and its symptoms. Clip from the Biology Matters podcast by @precisionlife.bsky.social. #MECFS
“ME is a really horrific illness… Many people tell us that ME steals their lives quite literally.” Sonya Chowdhury, CEO of @actionforme.bsky.social, explains Myalgic Encephalomyelitis (ME) and its symptoms. Clip from the Biology Matters podcast by @precisionlife.bsky.social. #MECFS
“For people with severe and very severe ME, the amount they can do without triggering post-exertional malaise is very small, and this group of people are just too ill to work.” Action for ME’s Clare Ogden giving evidence to the UK Parliament #MECFS
Adam@abrokenbattery.bsky.social · 3w ago“We surveyed 5,000 people with ME. The majority were not completing any paid work at all, and those who were, only 1 in 10 were able to work full-time.” @actionforme.bsky.social’s Clare Ogden, giving evidence to UK Parliament #MECFS
“We surveyed 5,000 people with ME. The majority were not completing any paid work at all, and those who were, only 1 in 10 were able to work full-time.” @actionforme.bsky.social’s Clare Ogden, giving evidence to UK Parliament #MECFS
1) 🇩🇪 There's a new randomised trial of cognitive behavioural therapy (CBT) for Long Covid, from the Johannes Gutenberg University Mainz in Germany. It claims that CBT lowered fatigue but it has the usual fatal limitations that make the results unreliable.
“They’re cross and they’re upset… many are only finding out through social media.” Dr Charles Shepherd, Medical Adviser to the @meassociation.org.uk, discussing the closure of the specialist #MECFS service at George Eliot Hospital, Nuneaton.
I hate the term Chronic Fatigue Syndrome because “fatigue doesn’t even come close to describing what it is” and it’s “a minor symptom” compared to the others. Natalie Williams explains why CFS is misleading. #MECFS
Clip from Stephen Bartlett's recent interview with mitochondrial researcher Dr Martin Picard. Bartlett says the top question on Martin’s videos was about #MECFS and #LongCOVID, but he's not sure what #MECFS is. Interesting, given the earseeds controversy.
“It was horrendous, it was almost like being in a semi-coma. All my very basic bodily functions were struggling and my capacity to do anything like read or watch TV was zero.” Dr Nina Muirhead, describing how ME affected her in 2020 #MECFS
“5 years after the introduction of NICE guideline NG206 [for #MECFS], little has changed. Service provision according to NG206 remains patchy and poor, with many patients having traumatic experiences” Helen Morgan MP, UK Parliament
ME “is as serious as AIDS, cancer, multiple sclerosis. You feel as ill as those people do, but neglected a lot by friends and family because they don’t realise how sick you really are.” ME patient Barbara Kell, BBC Look North 2012 #MECFS