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Lena

@lena16.bsky.social
189 followers 324 following 2 posts

Carer for my daughter with very severe ME | ME-Myalgic Encephalomyelitis |

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Reposted by Lena
Naomi Whittingham @naomiwhitt.bsky.social · 30/07/2026
I realised there was a part of chronic illness that I'd never actually written about. Not the grief or the isolation. But the experience of living inside a body that feels so unpredictable and unsafe. Now I’ve written it. I’d love to know if it resonates with you.
alifehidden.com
The Burden of Chronic Illness That I Rarely Talk About
Being ill is hard.  What an obvious thing to say – and yet how often it goes unspoken.  I’ve written about many aspects of life with long-term illness: from the grief of dreams shat…
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malin-and-me.bsky.social @malin-and-me.bsky.social · 24/09/2026
George Monbiot on the continuing betrayal of people with ME — abandoned, dismissed and gaslighted despite what we now know. Sweden is explicitly called out for still recommending GET and CBT in official documents. This is not history. It is happening now. www.theguardian.com/commentisfre...
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
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Carole Bruce @cabruce.bsky.social · 26/09/2026
@georgemonbiot.bsky.social on Natasha Devon’s show on LBC - 6-9 tonight. Discussing his recent Guardian article on #ME.
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Tom Kindlon @tomkindlon.bsky.social · 26/09/2026
“Blistering New Monbiot Column on ME/CFS Mistreatment, Neglect” By David Tuller virology.ws/2026/09/26/t... #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Trial By Error: Blistering New Monbiot Column on ME/CFS Mistreatment, Neglect
Leave a Comment / By David Tuller / 26 September 2026
By David Tuller, DrPH

George Monbiot, the British investigative journalist and longtime contributor to The Guardian, has written a corker of a column about the mistreatment and abuse of people with ME/CFS, including those with Long COVID. This newest piece follows two of Monbiot’s previous Guardian essays—in March, 2024, and October, 2024–that were equally blunt about the failures of the medical and academic establishments in this domain.
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George Monbiot @georgemonbiot.bsky.social · 24/09/2026
Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2 www.theguardian.com/commentisfre...
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
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Paula Knight 🎨✒️♿ @paulaknight.bsky.social · 24/09/2026
Important article in the Guardian today by George Monbiot about ME. I've been bedridden for 8 yrs and likely had ME for over 30 yrs since I had glandular fever in the '90s. My health was never the same since. Initially I was told I was 'just unlucky'. #MEcfs #MedicalScandals
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George Monbiot @georgemonbiot.bsky.social · 21/09/2026
While there are horror stories from many countries, the Netherlands and Sweden really stand out. They might be very "civilised" in some respects, but on ME/CFS they seem to be in the Dark Ages.
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Adam @abrokenbattery.bsky.social · 04/07/2026
“He was a doctor who ran marathons. Now, walking to the bathroom is harder than any marathon he ever ran. In this grade of severity ME is only invisible if people purposefully look away.” Evelien van den Brink calling for biomedical #MECFS research in European Parliament in 2019.
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EndMalnutritioninME @malnutritionme.bsky.social · 08/08/2026
The 25% ME Group and Action for ME @actionforme.bsky.social have released a report on severe ME drawing on the experience of people with #ME, their carers, and professionals. 25megroup.org/wp-content/u... #SevereMEDay
25megroup.org
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Jamie Crawford @jamiecrawford68.bsky.social · 08/08/2026
Unless it’s someone you know personally, you won’t meet anyone with severe ME. They’re typically bedbound, and live in constant, well, discomfort doesn’t come close to it. See below. The govt, and by extension NHS, do nothing. It’s a living hell. #severeMEday #severeMECFS
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Adam @abrokenbattery.bsky.social · 03/08/2026
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.
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Adam @abrokenbattery.bsky.social · 04/08/2026
“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
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Adam @abrokenbattery.bsky.social · 05/08/2026
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
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Adam @abrokenbattery.bsky.social · 06/08/2026
“Patients have battled for years against doctors, psychiatrists and the public who believed ME was a psychological condition.” ITV journalist Stacey Poole reporting on severe ME in 2005. More than 20 years later, little has changed. #SevereMEAwarenessWeek #MECFS
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Adam @abrokenbattery.bsky.social · 08/08/2026
Content warning Today is #SevereMEDay the birthday of Sophia Mirza. Sophia was wrongfully sectioned for refusing to attend a clinic that treated patients with Graded Exercise Therapy. The mistreatment during her stay resulted in a dramatic deterioration and she later died.
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Adam @abrokenbattery.bsky.social · 18/06/2026
“These [Prevention of Future Deaths] reports make it clear that it’s not just a question of future improvement but a question of patient safety now. More deaths from ME must be prevented.” Baroness Scott of Needham opening the House of Lords debate on Severe #MECFS
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Adam @abrokenbattery.bsky.social · 19/06/2026
“Only 10.8% of people with severe or very severe ME feel supported by the NHS.” Baroness Walmsley, during a House of Lords debate also mentions a patient being offered a multivitamin and talking therapy despite being unable to tolerate sound.
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Anna @annadite.bsky.social · 01/07/2026
Dagens viktigaste läsning. Det FÅR INTE gå till såhär. Det bara får inte. Men ändå så är det exakt vad som sker och det är förtvivlande och vidrigt.
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Bateman Horne Center @batemanhornecenter.bsky.social · 21/05/2026
Orthostatic intolerance is common in ME/CFS & Long COVID, yet many patients go undiagnosed for years. Our latest blog explains: • Tilt Table Tests • Active Stand Tests • NASA Lean Tests …and why accessible testing matters. Read more: bit.ly/49ZOOgw
Arm with blood pressure cuff and stethoscope; banner: new blog post about orthostatic intolerance testing methods.
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Bateman Horne Center @batemanhornecenter.bsky.social · 02/06/2026
Been told your orthostatic testing was "normal," but standing still makes you feel worse? Orthostatic intolerance is broader than POTS. Our latest blog explores emerging research, diagnostic gaps, and why "no POTS" doesn't always mean "no dysautonomia." Read blog: bit.ly/4egSlcU
Person covering their eyes, promotional graphic for a blog about dysautonomia and POTS.
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Adam @abrokenbattery.bsky.social · 04/06/2026
“People with ME have sadly had to endure far too much disbelief and delay.” Clip of Dr Hans Kluge, WHO Regional Director for Europe, opening the @investinmeresearch.bsky.social 2026 International ME Conference #IIMEC18.
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Adam @abrokenbattery.bsky.social · 02/05/2026
“You mourn yourself while still alive. And others move on as if you’ve already died.” Buried Alive with M.E. — a new film by Anil van der Zee (13 mins) Extraordinary work from someone who is so severely affected by #MECFS
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Adam @abrokenbattery.bsky.social · 09/05/2026
“So what you’re really telling us is that everything we’ve been taught in our training as nurses is wrong for this condition.” Dr Nigel Speight describing a nurse’s reaction after he explained how to care for a patient with severe #MECFS.
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EndMalnutritioninME @malnutritionme.bsky.social · 11/05/2026
People with #ME need protection from overexertion. Any activity can trigger post-exertional malaise which can cause a flare up of symptoms and possibly a relapse or crash. Too much exertion can cause a permanent worsening of the disease. #MEAwarenessWeek
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EndMalnutritioninME @malnutritionme.bsky.social · 12/05/2026
People with #severeME need protection from stimulation. Noise, light, scented beauty products, and even quiet talking can trigger post-exertional malaise, causing a flare up of symptoms and risking a relapse. Their room may need to be completely dark, scent free, and silent. #MEAwarenessWeek
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EndMalnutritioninME @malnutritionme.bsky.social · 13/05/2026
Lots of information on how to prevent life-threatening #malnutrition in patients with #severeME in this presentation by Helen Baxter. #MEAwarenessWeek #EndMalnutritionInME @patientsafetylearning.org @patientsafetywatch.bsky.social www.youtube.com/watch?v=FRx7...
youtube.com
Helen Baxter V2
YouTube video by Malnutrition Task Force
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ThereForME @thereforme.bsky.social · 24/05/2026
“Very severe ME is quite a unique condition in that there is effectively no NHS specialist services that are available for someone in James’ position.” Our co-founder @karenlhargrave.bsky.social speaks to @theipaper.com about the financial cost of supporting a loved one with very severe ME.
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Adam @abrokenbattery.bsky.social · 28/05/2026
“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
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Adam @abrokenbattery.bsky.social · 15/05/2026
Clip from the Post Exertional Mayonnaise podcast. ME and a history of disbelief with Dr Nigel Speight. The whole episode is well worth a watch. Thanks to @talmandaniel.bsky.social. youtu.be/xwOaRAFwOxY?...
youtu.be
Myalgic Encephalomyelitis and a history of disbelief with Dr Nigel Speight
YouTube video by Post-Exertional Mayonnaise
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Adam @abrokenbattery.bsky.social · 15/05/2026
Sleep hygiene can be just as “damaging as graded exercise” for patients with #MECFS Dr Nigel Speight describes a girl with severe sleep reversal. She walked into hospital and was carried out a month later needing to be tube fed.
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Adam @abrokenbattery.bsky.social · 18/05/2026
George Monbiot describes the treatment of #MECFS as “The Greatest Medical Scandal of the 21st century”. Repost of the introduction to my 27-minute explainer video for #MEAwarenessMonth — now optimised for phones.
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Adam @abrokenbattery.bsky.social · 19/05/2026
“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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Adam @abrokenbattery.bsky.social · 20/05/2026
Caroline Kingdon speaking about functional impairment and mortality in #MECFS Biobank research has shown people with ME/CFS to be more functionally impaired than people with MS. And between 2001–2016, ME/CFS was mentioned on 88 death certificates in England and Wales.
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Adam @abrokenbattery.bsky.social · 26/05/2026
“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.
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Adam @abrokenbattery.bsky.social · 26/05/2026
“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.
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Adam @abrokenbattery.bsky.social · 27/05/2026
“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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Adam @abrokenbattery.bsky.social · 29/05/2026
“Having ME is not a choice.” A 37-year-old woman with severe #MECFS says the disability assessment process in Switzerland is “simply dangerous and unsuitable for people like us”. Clip from Swiss TV on severe #MECFS.
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Adam @abrokenbattery.bsky.social · 30/05/2026
“I don’t think I can think of another condition that would be treated this way.” Dr Anna Brooks, Liggins Institute. A powerful opening to Zoe Madden-Smith’s award-winning RE:News documentary on #MECFS
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Adam @abrokenbattery.bsky.social · 31/05/2026
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
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Adam @abrokenbattery.bsky.social · 19/01/2026
My #MECFS scandal explainer video has just passed 200,000 views. Given the level of interest, I’ve written a follow-up article covering key examples I didn’t include, as well as some developments since. medium.com/@abrokenbatt...
medium.com
ME/CFS Scandal Follow up
The ME/CFS scandal goes much deeper than my 27-minute explainer video. That was just an introduction — how for decades patients were told…
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Anil van der Zee @anilvanderzee.bsky.social · 01/06/2026
1) This paper provides the a structured, transdisciplinary care guide for people with #severeME in home settings. The guide fills a major gap in professional knowledge and supports both family caregivers and health professionals in delivering safe, stabilizing care for people with severe ME.
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Anil van der Zee @anilvanderzee.bsky.social · 02/06/2026
1) This video shows a unique care unit in Norway called Røysumtunet for people with #severeME & very severe ME. It is one of the only places where the sickest patients can receive specialised care. We need this everywhere!! #pwme #myalgicE #millionsmissing #severeME
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Anil van der Zee @anilvanderzee.bsky.social · 01/05/2026
‼️ BURIED ALIVE WITH M.E.‼️ For #MEAwarenessMonth I made a severe ME body‑bag “dance” film about death within the ME community. youtu.be/XhrAhGkrGuQ?... I also joined the online expo ME Kills by A Quiet Storm, which goes live on May 12th, 1/ #pwme #myalgicE #millionsmissing
youtu.be
Buried Alive with M.E. (with subtitles)
YouTube video by Anil about ME
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Richard Vallée @richardvallee.bsky.social · 21/03/2026
True story. No, seriously, this is more of less what happened. A fraudulent scandal at least as bad as Theranos.
A 3-panel comic showing a therapist gladly reporting to a participant in the PACE trial that even though they have deteriorated from the treatment, they still qualify as having been recovered, which is a true story of what happened.
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Adam @abrokenbattery.bsky.social · 30/01/2026
New article on Savannah’s case. Queen Elizabeth Hospital has declined to take up Sonya Chowdhury’s offer to advocate. Savannah remains without nutrition. Fluids restored after pressure, pain meds reduced, and she is still at serious risk. www.thecanary.co/uk/analysis/...
thecanary.co
London hospital STILL starving severe ME patient, Savannah — bias medical approach to blame
A South London hospital is still putting severe ME patient Savannah's life at risk and a clinician who psychologises ME might be why.
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Tom Kindlon @tomkindlon.bsky.social · 31/01/2026
‪2/‬ ‪"I can choose to exceed my limits, but I can’t choose to recover from exceeding them, and telling me to try is like telling a diabetic who’s‬ ‪being forced to eat a box of fudge to “try” not to become hyperglycaemic"‬ #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #PEM ‪
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Tom Kindlon @tomkindlon.bsky.social · 31/01/2026
Extract from "An Essay on Living with Severe ME" virology.ws/2026/01/27/t... Blog post written by someone living with very severe ME but most of the points are pretty general, relevant for people of all severities #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome 1/
"First of all, the problem with fatigue in ME is not up front, in how much you can do in the first place. The problem is how much you can recover from. The disease is defined by exertion intolerance, which sounds like a euphemism for laziness, but in fact it means that your body doesn’t respond to exertion in the normal biological way and you don’t recover properly from even trivial effort."
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Adam @abrokenbattery.bsky.social · 01/02/2026
CW: assisted suicide, severe ME/CFS Sadly, Samuel, 21, died on 30 Jan after living with severe ME/CFS. His doctor warns about the number of patients being failed by the system: “I keep hearing the phrase - I don’t want to live like this anymore” www.heute.at/s/samuels-ar...
heute.at
Samuels Arzt erhebt im ORF schwere Vorwürfe | Heute.at
ME/CFS: Der 21-jährige Samuel aus Österreich wählte nach schwerer Krankheit den assistierten Suizid. Die Hintergründe zum tragischen Fall.
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Adam @abrokenbattery.bsky.social · 05/02/2026
Tessa Munt MP highlighted Savannah’s case in Parliament. She said the Government’s ME delivery plan says avoidable deaths should be ‘never events’ but her critical condition was made worse by inadequate treatment and without specialist services cases like this will keep recurring.
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The ME Inquiry Report @themeinquiryreport.bsky.social · 20/01/2026
Är du förberedd inför en större samhällskris och hur förbereder man sig när man är svårt kroniskt sjuk? Om detta handlar dagens inlägg där jag också delar med mig av material från mina egna krisförberedelser. themeinquiryreport.com/2026/01/20/o... #mecfs #pem #hemberedskap #kronisksjukdom
themeinquiryreport.com
Om krisen eller kriget kommer och du har ME
Med ett osäkert omvärldläge, extrema, väderomslag och (bitvis) dålig krisberedskap på samhällsbasis känns det viktigt att vara förberedd. Särskilt som behoven vid kronisk sjukdom och funktionsnedsä…
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