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Lindsay Skipper

@lindsayskipper.bsky.social
126 followers 222 following 19 posts

Living but not thriving with Long Covid | Peer support committee member for Long Covid Physio | PPIE representative in #LongCOVID research

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Reposted by Lindsay Skipper
Grace Hurford PhD @ghurford.bsky.social · 23/09/2026
Super animation 🙏 👏
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Lindsay Skipper @lindsayskipper.bsky.social · 24/09/2026
Read this article if you haven’t already. The truth about this condition is so rarely heard in mainstream media. Thank you George. bsky.app/profile/geor...
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Reposted by Lindsay Skipper
Elke Hausmann @drelke.bsky.social · 24/09/2026
‚It's as if nothing has been learned.‘ #LongCovid #ME 3/3
It's as if nothing has been learned. Perhaps that's not surprising. A freedom of information request to NHS England found that, of the tens of thousands of practitioners who would benefit from it, after a year, only 74 had completed the new learning module on ME/CFS guidance. Meanwhile, as recently as last summer, the Department for Work and Pensions was still teaching its trainees elements of the old, discredited view of the condition. And, as the Liberal Democrat MP Tessa Munt, a hero of this story, tells me:
"The piecemeal offerings in the government's final delivery plan are not going to touch the system-wide failings."
It's not only the UK. I've been contacted by patients from around the world. In Sweden and Australia, official guidance still recommends GET and CBT. In Switzerland, I'm told, treatment is spiralling backwards, with a new wave of psychologisation.
Norway, Finland and the Netherlands, despite their progressive medical reputations, sound like a waking nightmare for ME/CFS patients.
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Elke Hausmann @drelke.bsky.social · 24/09/2026
Yes! ‚In many practices, GET has simply been rebranded as "building tolerance" or "pacing up" or "a little more activity each day"‘ 2/3
One mother told me "the consultant cardiologist recommended a graded exercise programme" and "a treadmill test" for her bedbound son. When she told him this contradicted Nice guidelines, he replied:
"Well, what do you want me to do?" Another made the same challenge to her GP, but the doctor "denied this strongly and reiterated to my daughter that she should do the exercises". This is very common: many doctors, I'm told, seem unaware of the new guidelines and react defensively when challenged. In many practices, GET has simply been rebranded as "building tolerance" or "pacing up" or "a little more activity each day".
Patients report being treated with "contempt and derision". Loads are still being offered CBT. Some have been propelled by NHS doctors towards quack private "cures", now offered by a growing industry that preys on people's desperation.
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Elke Hausmann @drelke.bsky.social · 24/09/2026
Thank you @georgemonbiot.bsky.social for an article that really gets to the heart of what is going for people with #ME and #LongCovid and how we are being treated, by the #NHS, by politics, by the media (with notable exceptions in all areas) 1/3 www.theguardian.com/commentisfre...
To find out what this neglect looks like in practice, this week I put out a call on Bluesky asking people with ME/CFS about their recent experiences of treatment. I was immediately inundated with horrifying testimonies. "I've just been completely abandoned"; "a 10-year waiting list for treatment"; "we've given up seeking medical support"; "stuck in limbo";
"I just felt utterly unheard, invalidated".
• I've
been sent hundreds of shocking and heart-rending accounts.
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Frances Ryan @francesryan.bsky.social · 24/09/2026
As I lay in bed with PEM, always grateful to my colleague @georgemonbiot.bsky.social for helping bring M.E. into mainstream attention. The way people with M.E. are ignored and actively harmed by medics who have been trusted to help them is a hidden scandal. 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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Anil van der Zee @anilvanderzee.bsky.social · 24/09/2026
Great rant by George Monbiot about the fact despite new guidelines patients with ME are still poorly treated in the UK. Unfortunately it doesn't seem be much better elsewhere such as the Netherlands... #pwme #myalgicE #millionsmissing #severeME #LongCovid #PAIS #IACI
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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George Monbiot @georgemonbiot.bsky.social · 24/09/2026
With great thanks to the hundreds of people who gave me their testimonies. If I hadn't said "stop" after a few hours, it might have been thousands. The sheer scale of this scandal is hard to get your head around. 2/2
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fcrouter.bsky.social @fcrouter.bsky.social · 24/09/2026
I’m struck by the similarities with writer Ed Yong: he was inundated with personal stories when he started researching/writing about Long Covid. Just hearing so many patients’ experiences & learning about their real suffering was difficult—he had to step back from doing that work for a while.
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Natasha Devon @natashadevon.bsky.social · 24/09/2026
George will be coming on my show this weekend to discuss this very important article.
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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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Long Covid Advocacy @longcovidadvoc.com · 24/09/2026
Extraordinary to see ME covered like this in mainstream media. The truth is the neglect is so staggering people can't believe it. As George says " has seldom been a stronger case for a public inquiry." 🖇️article 👇
Across the decades, millions of people have been neglected, dismissed and mistreated, and still it goes on. We need to ask why so many patients have been abandoned, why discredited and dangerous treatments continue to be prescribed and why ignorance and neglect still dominate, in the health system and beyond. In other words, there has seldom been a stronger case for a public inquiry.
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Long Covid Kids @longcovidkids.bsky.social · 24/09/2026
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed. @georgemonbiot.bsky.social www.theguardian.com/commentisfre... #ME #LongCovid
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Mark Faghy @profmarkfaghy.bsky.social · 22/09/2026
Our animation highlighting the key results from ERASE_LC
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Martin Grimshaw Has Long Covid @thrivingplanet.bsky.social · 22/09/2026
Many many thanks @profmarkfaghy.bsky.social 🙏
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Long COVID Physio @longcovidphysio.bsky.social · 22/09/2026
Results from the ERASE_LC trial Great to see biomedical research for LongCovid And fantastic to see that patients were at the centre of the entire research project #collaboration 🙏
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Sammie McFarland @sammiemc.bsky.social · 22/09/2026
Congratulations to all involved. Thank you for working with lived experience partners to ensure this study took the upmost care of participants.
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Lindsay Skipper @lindsayskipper.bsky.social · 22/09/2026
For those too unwell to read the full paper or thread, here is short animation to show what happened in the ERASE-LC trial which tested the drug Remdesivir with people who have long Covid bsky.app/profile/prof...
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Mark Faghy @profmarkfaghy.bsky.social · 22/09/2026
📢 Our paper is published in Oxford Open Immunology: The ERASE_LC trial evaluated whether a 5-day course of intravenous remdesivir is feasible, safe, and acceptable for people living with Long COVID. This is the first study to specifically examine remdesivir as a treatment for LC.
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Lindsay Skipper @lindsayskipper.bsky.social · 22/09/2026
Results from the ERASE-LC trial now out. This study had the patient voice & needs at the heart of it all. Careful attention was given to prevent reinfection or cause a worsening of PEM throughout. Huge thanks to the team & all the participants. …now we need the RCT! bsky.app/profile/prof...
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Mark Faghy @profmarkfaghy.bsky.social · 22/09/2026
Our short animation to descirbe the results and findings.
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Mark Faghy @profmarkfaghy.bsky.social · 22/09/2026
This provides an important foundation for the next generation of Long COVID treatment trials. 📄 Read the paper: doi.org/10.1093/oxfi... @derbyuni.bsky.social @exeter.ac.uk @lindsayskipper.bsky.social @longcovidphysio.bsky.social @longcoviduk.bsky.social @longcovidadvoc.com @1goodtern.bsky.social
doi.org
An Open-Label Feasibility Study of Remdesivir in Long COVID: Results from the ERASE LC Trial
AbstractObjective. Treatment of acute COVID-19 with anti-viral and immunomodulator medications demonstrates a reduced risk of long-term outcomes. To date,
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Mark Faghy @profmarkfaghy.bsky.social · 22/09/2026
🚀 The key message: ERASE-LC shows that administering IV remdesivir to people with LC is feasible, acceptable, and well tolerated. Signals suggest therapeutic promise, but only a properly powered RCT will determine whether remdesivir provides meaningful benefit.
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Mark Faghy @profmarkfaghy.bsky.social · 22/09/2026
These findings should be interpreted cautiously, but they provide a strong rationale for further investigation.
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Mark Faghy @profmarkfaghy.bsky.social · 22/09/2026
📊 Although not designed to prove efficacy, exploratory analyses showed some very encouraging signals. We observed improvements in many patient-reported outcomes and Clinical assessments, including physical function tests such as the 6-minute walk test.
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Mark Faghy @profmarkfaghy.bsky.social · 22/09/2026
🛡️ Safety was a primary consideration. There were no severe adverse reactions were reported, and almost all participants successfully completed treatment. This is an important first step in determining whether IV antiviral treatment strategies can be tested in larger trials.
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Mark Faghy @profmarkfaghy.bsky.social · 22/09/2026
These findings demonstrate that delivering a multi-day IV antiviral intervention in this population is both practical and acceptable.
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Mark Faghy @profmarkfaghy.bsky.social · 22/09/2026
🔬 We recruited 73 adults with confirmed Long COVID across two UK sites. Key feasibility findings: ✅ 97% completed the full 5-day remdesivir course ✅ 96% completed follow-up assessments ✅ High engagement with outcome measures and symptom tracking
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Mark Faghy @profmarkfaghy.bsky.social · 22/09/2026
Our hypothesis was driven by ongoing questions around viral persistence and its potential role in symptom burden. #LongCOVID #COVIDResearch
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Elke Hausmann @drelke.bsky.social · 15/06/2026
Dear psychiatrists #RCPsychIC , Please listen to us #HearOurVoices Yours, #LongCovid @rcpsych.bsky.social 1/6
It is vital that psychiatrists who see patients with Long Covid have an understanding of post-exertional malaise or PEM, which a significant proportion of Long Covid patients experience, or rather suffer.
PEM is more than exercise intolerance.
Cognitive and emotional as well as physical exertion can lead to a patient becoming very unwell, typically with a delay, and in order to avoid that, patients need to learn to limit their activities, or pace.
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Lindsay Skipper @lindsayskipper.bsky.social · 11/06/2026
New article from the team of @profmarkfaghy.bsky.social highlighting how lived experience should be part of all stages of research and not simply tokenistic. Patients are the expert in their condition and there is always more to hear and learn from them. link.springer.com/content/pdf/...
link.springer.com
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Long COVID Physio @longcovidphysio.bsky.social · 24/05/2026
Heute veröffentlicht 🔔 Die vollständige Long-COVID-Videoserie auf #Deutsch @longcovidde.bsky.social @fisiocamera.bsky.social Zu den neuen Episoden gehören: ⚓️ Auswirkungen von #LongCOVID auf den Alltag 👷‍♀️ Sichere Long-COVID-Rehabilitation ⚖️ #Pacing 🏃‍♂️ Bewegung longcovid.physio/german-long-...
longcovid.physio
Long COVID Videoserie (German) — Long COVID Physio
Long COVID Physio hat sich mit FisioCamera zusammengetan, um eine Reihe von Lehrvideos über Long COVID bereitzustellen
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World Health Network @thewhn.bsky.social · 04/05/2026
Children should not have to choose between being well and receiving a good education. When students are sick — whether from acute illness, Long COVID, or other chronic conditions — rigid attendance policies can undermine both their health and their ability to learn. (...)
WHN graphic with a dark, grayscale photo of a child resting their head on their arms at a desk in the background. At the top is the logo “whn.global.” Large text reads: “Sick students need flexibility, not penalties.” Smaller text reads: “Children with Long COVID are 2.5× more likely to miss school. Remote and hybrid options help them stay connected and keep learning.” Additional text reads: “Children shouldn’t have to choose between their health and their education. Systems that don’t adapt put learning at risk and allow disease to spread.” At the bottom: “World Health Network. Science for a safer, healthier world.”
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Long Covid Kids @longcovidkids.bsky.social · 30/04/2026
A major new review on #LongCovid brings together current evidence on what may be driving the condition - and what still needs to change. Proud to see contributions from the LCK community, including trustee @profmarkfaghy.bsky.social Clear message: more work is needed www.nature.com/articles/s43...
nature.com
Current status and future perspectives on the mechanistic and pathophysiological understanding of long COVID - Communications Medicine
Faghy et al., review the current literature on Long COVID pathophysiology, linking immune dysregulation, viral persistence, and vascular injury to enduring symptoms. They highlight evidence to guide f...
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Stevie Ped @smped.bsky.social · 30/04/2026
Very comprehensive breakdown of a really complex condition. Nice work by some of the heavyweights in the field.
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Dr Noor Bari @njbbari3.bsky.social · 30/04/2026
The pathophysiology of that disease they are trying to treat with positive vibes. www.nature.com/articles/s43...
nature.com
Current status and future perspectives on the mechanistic and pathophysiological understanding of long COVID - Communications Medicine
Faghy et al., review the current literature on Long COVID pathophysiology, linking immune dysregulation, viral persistence, and vascular injury to enduring symptoms. They highlight evidence to guide f...
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Dr David Joffe MB BS(Hons), PhD, FRACP @davidjoffe64.bsky.social · 29/04/2026
An Opus from my Long C-19 Colleagues from across the world. Lead author, @profmarkfaghy.bsky.social ... Total CHAMPION‼️ My contribution... Sleep Medicine🙏🏻 www.nature.com/articles/s43...
nature.com
Current status and future perspectives on the mechanistic and pathophysiological understanding of long COVID - Communications Medicine
Faghy et al., review the current literature on Long COVID pathophysiology, linking immune dysregulation, viral persistence, and vascular injury to enduring symptoms. They highlight evidence to guide f...
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Binita Kane @binitakane.bsky.social · 29/04/2026
Our new paper out today in Nature Comms, led by the amazing @profmarkfaghy.bsky.social Current status and future perspectives on the mechanistic And pathophysiological understanding of Long Covid www.nature.com/articles/s43...
nature.com
Current status and future perspectives on the mechanistic and pathophysiological understanding of long COVID - Communications Medicine
Faghy et al., review the current literature on Long COVID pathophysiology, linking immune dysregulation, viral persistence, and vascular injury to enduring symptoms. They highlight evidence to guide f...
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Long Covid Advocacy @longcovidadvoc.com · 30/04/2026
Excellent 🧵 Long Covid is not psychologically informed! It's: 🦠 Viral persistence 🧬 Immune dysregulation 🧠 Neurological 🫀 Cardiovascular ⚡ Mitochondrial 🧪 Autoimmunity Thanks to all the team involved.
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Lindsay Skipper @lindsayskipper.bsky.social · 29/04/2026
Essential reading for anyone living with LC or working with patients in any specialty. LC is so widespread. All healthcare workers need to understand it and we urgently need greater research and treatment for this condition.
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Mark Faghy @profmarkfaghy.bsky.social · 29/04/2026
8️⃣ To reinforce our patient focused approach - a number of the articles co-authors are patients. They always make sure we ask the right questions..
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Mark Faghy @profmarkfaghy.bsky.social · 29/04/2026
7️⃣ Take‑home message Long COVID is not a single disease but a complex, multisystem condition. Advancing care will depend on mechanism‑driven research, collaboration across disciplines, and sustained long‑term investment.
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Mark Faghy @profmarkfaghy.bsky.social · 29/04/2026
6️⃣ Future recommendations We call for: 🔹 Better patient phenotyping and stratification 🔹 Longitudinal, mechanistic cohort studies 🔹 Integration of multi‑omics and imaging approaches 🔹 Standardised definitions and outcome measures 🔹 Closer alignment between basic science and clinical research
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Mark Faghy @profmarkfaghy.bsky.social · 29/04/2026
5️⃣ This matters because.. Without a clear mechanistic understanding, progress on diagnostics, targeted treatments, and clinical trials remains slow and fragmented.
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Mark Faghy @profmarkfaghy.bsky.social · 29/04/2026
4️⃣ Cross‑cutting issues The authors emphasise: • Biological heterogeneity between patients • Overlapping mechanisms across organ systems • The lack of definitive biomarkers • Challenges in case definitions and stratification
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Mark Faghy @profmarkfaghy.bsky.social · 29/04/2026
3️⃣ Key mechanistic areas covered 🦠 Viral persistence and reservoirs 🧬 Immune dysregulation & chronic inflammation 🧠 Neurological and neurocognitive mechanisms 🫀 Cardiovascular and endothelial dysfunction ⚡ Mitochondrial and metabolic impairment 🧪 Autoimmunity and microclot hypotheses
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Mark Faghy @profmarkfaghy.bsky.social · 29/04/2026
2️⃣ Scope of the review The paper brings together evidence across multiple systems and disciplines, reflecting the heterogeneous and multisystem nature of long COVID.
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Mark Faghy @profmarkfaghy.bsky.social · 29/04/2026
1️⃣ Aim This review aims to synthesise current evidence on the mechanisms and pathophysiology underlying long COVID, highlighting what is known, what remains uncertain, and why progress has been challenging.
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Mark Faghy @profmarkfaghy.bsky.social · 29/04/2026
Our new paper is here: Current status and future perspectives on the mechanistic and pathophysiological understanding of long COVID www.nature.com/articles/s43...
nature.com
Current status and future perspectives on the mechanistic and pathophysiological understanding of long COVID - Communications Medicine
Faghy et al., review the current literature on Long COVID pathophysiology, linking immune dysregulation, viral persistence, and vascular injury to enduring symptoms. They highlight evidence to guide f...
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tern @1goodtern.bsky.social · 15/03/2026
Very moving video from Long Covid Physio ❤️👇
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