@drelke.bsky.social
German, English, Spanish Sociology, Medicine, General Practice
Spot on! 99,9% of ME is 'outside the sphere of human experience'. In fact, people will never ever realise it's a different category altogether. Words like 'illness' or 'disease' don't even come close.
03.02.2026 17:43 — 👍 7 🔁 3 💬 0 📌 0
www.who.int/europe/event...
Myth-busting #LongCovid with WHO Europe
We’re proud to support WHO Europe on this vital project tackling myths and misinformation about Long Covid, 6 years on from COVID-19 being declared a Public Health Emergency of International Concern.
1/5
“If people aren’t getting their medications and they’re not getting their treatments, they will die.” -- ICU nurse Mary Turner, Minneapolis,
The federal government has created a public health crisis, keeping people from life-saving care. 🧵 ⬇️
@melodyschreiber.com @theguardian.com
Dr Rae Duncan is a consultant cardiologist at Newcastle Hospitals NHS Foundation Trust and a Long Covid expert adviser at the World Health Network. "I treat patients from 16 onwards, and to see schoolchildren whose lives have completely destroyed by this virus is horrific," she says. "I also see young parents who are so ill, they cannot care for their children. "What we need desperately is the level of funding research to match the level of need and disability." She believes the new study is "a brilliant idea". "We absolutely need far more biomedical research into the similarities and differences between Long Covid and ME/CFS, examining effects on brain, blood vessels, immune system autonomic nervous system, viral persistence and mitochondrial function, to help identify new and better treatments
#LongCovid
#ME
www.bbc.co.uk/news/article...
CW Edited clip from an ORF report on the death of Samuel by assisted suicide.
Highlights that many people don’t know about the illness, there are no effective treatments, there is a lack of care, services, financial aid and support for people with #MECFS in Austria.
#LongCovid
#ME
It's true that the psychiatrists who hijacked this friendless disease decades ago weren't using psychiatry to claim that ME isn't "real". They were, on the contrary, using ME to try and emphasise that psychiatry is real - "Look how properly actually sick your delusions have made you!" They've filled the gulfs in their knowledge with ideology instead of evidence, and they respond to valid criticism with (increasingly desperate) parades of intellectual and moral bankruptcy. Their folly has inflicted appalling misunderstanding and mistreatment, for decades now, on hundreds of thousands of people - and that's not even counting Long Covid. But they were allowed to make us their playthings in this way by a medical establishment that simply doesn't want to bother with ME. Progress in understanding this disease is slowly being made now, but it's being made by doctors who started by believing their patients. I don't think that's a coincidence; I think it's vital.
‚It's true that the psychiatrists who hijacked this friendless disease decades ago weren't using psychiatry to claim that ME isn't "real". They were, on the contrary, using ME to try and emphasise that psychiatry is real - "Look how properly actually sick your delusions have made you!"‘
#ME
2/2
‚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.‘
Great piece on #ME and #PEM
1/2
For me, changing from hot (which I used to love, but can’t tolerate anymore) to cool showers was a game changer. Not easy in winter, but you get used to it. Now showers don’t make me feel worse like they used to.
02.02.2026 05:53 — 👍 3 🔁 0 💬 0 📌 0Here's my take on some of the debate over Invisible Illness, the new medical anthropology book that has triggered debates and controversy. This post examines the back and forth over the chapter that includes PACE and the history of the creation of the CFS construct.
virology.ws/2026/02/01/t...
Interesting paper with an anthropological view on the Covid-19 pandemic, Tmava & Burstein
- We argue that COVID-19 persists as a structuring condition that continues to impact individual experiences as well as domestic and global politics and culture.
www.tandfonline.com/doi/full/10....
1/5
Take care of yourself. Continuing to work might not be sustainable. I tried very hard to hold on to my job for 2 years. I just could not imagine letting that part of my life go. In the end I had to.
01.02.2026 06:14 — 👍 3 🔁 0 💬 0 📌 0What an excellent Substack bringing together lots information to show how Covid is being erased when talking about children‘s problems in the media, lending weight to the ,narrative compression‘ and ‚narratives of closure‘ re Covid argued here:
www.tandfonline.com/doi/full/10....
#LongCovid
'Brigitte' Magazine (German) German women's magazine, Brigitte, a mainstream publication with a large circulation, has published a special edition about ME/CFS. I've not read it all yet, but by all accounts it's well-informed about the history of, and biomedical research into, the condition. Interviews and feature articles with patients, carers, doctors and researchers explain the condition and the impact it can have. Most interesting to therapists is an in-depth interview with renowned ME advocate and psychotherapist, Dr Bettina Grande, who explains how therapy can (and how it can't) help people with ME/CFS. *** You have to allow adverts to read the magazine for free. You may be able to have your browser translate the text. Alternatively, you could copy and paste it into 'google translate' or similar, to read it in your own language.
Brigitte, a mainstream German women's magazine, has published a special edition about #MECFS
drvjdg.clicks.mlsend.com/ty/cl/eyJ2Ij...
Google translation
www-brigitte-de.translate.goog/gesund/mecfs...
Screenshot from @chronicliving123.bsky.social newsletter
#CFS #PwME @lammasleaves.bsky.social
When will it become normal in the service of public education for articles extolling the benefits of exercise for ‚everyone‘ to acknowledge that there is a group of people for whom exercise is detrimental?
My guess is never.
#LongCovid
#ME
Sarah's story underscores why tackling myths and false information matters: long COVID is real, complex and life-changing. Increasing understanding of the condition is essential to reducing stigma and supporting those affected. Guided by international good practices in risk communication, the long COVID myth-busters series was developed to reflect the realities of patients' experiences, share evidence-based facts, address misconceptions, and empower communities with reliable information to support informed decisions and those living with long COVID. Seven patient stories from 5 European countries - Czechia, Iceland, Slovenia, Switzerland and the United Kingdom - were collected and paired with these myths to ensure authenticity. These stories illustrate the varied and complex ways that long COVID affects individuals, making the facts more relatable and fostering deeper understanding and empathy.
Thank you
@sarahbarleymc.bsky.social
for your ongoing advocacy for all of us with #LongCovid - now with the WHO 👏
www.who.int/europe/event...
Dass es ein systemisches Problem ist, merkt man auch daran, dass ÄrztInnen Psychologisierung auch in Hinblick auf sich selber anwenden, wenn sie krank werden, wie in Anil van der Zee‘s Film gezeigt wird….
‚Ist das psychosomatisch, was mit mir passiert?‘.
#LongCovid
#ME
youtu.be/J0ywwLIfH_w?...
#LongCovid
#ME
‚there is no cure (…) it‘s living with it, it’s coping with it the best you can‘.
#ME
Long Covid can affect anyone who has had COVID-19, regardless of age or health. WHO logo
Despite this face, myths persist that 'being young and fit protects you from Long Covid'. This is false. The phot shows a teenage girl on her paddle board in the sea. She is standing up holding a paddle, a small dog is wearing a life jacket on the back of the board. The sky shows a sunset and is shining on the water.
Today is the launch of the Myth-busters: debunking #LongCovid myths and misconceptions.
We are pleased to have supported the development of these resources with The World Health Organisation.
www.who.int/europe/event...
#MythBusters #HealthSecurity #LongCovidKids #HealthInformationIntegrity #WHO
This is what first class #PublicHealth messaging looks like in the 7th year of an #OngoingPandemic of an injurious, #AirborneVirus.
It's not 🚀 science. It's now common sense.
Feel free to take notes, @ipaccanada.bsky.social & @cmadocs.bsky.social -
Somebody lying in bed with their arms over their eyes (looks like they are probably distressed) The Implications and Predictability of Sleep Reversal for People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Machine Learning Approach Our study provides evidence that sleep reversal identifies a more impaired subgroup within the population of individuals with ME/CFS. Based on previous research findings that increased levels of pro-inflammatory cytokines contribute to more impaired sleep patterns, it is possible that significant inflammation may be an underlying cause of sleep reversal. Studies suggest that inflammation may relate to a majority of the predictive variables in our study. Additionally, as prior research indicates a relationship between low cortisol levels and circadian rhythm misalignment. Read more here>>
The Implications and Predictability of Sleep Reversal for People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Machine Learning Approach
www.mdpi.com/2227-9032/13...
Screenshot from January AMMES newsletter
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
"Ohne ihn [Freund] und meine Freundinnen wäre ich vermutlich nicht mehr am Leben." Margarete Stockowski @marga_owski gibt berührende Einblicke in ein Leben mit #MECFS. Niemand von uns hat vorher gewusst, dass man so schwer erkranken kann. Tragt konsequent Maske!! 😷
www.brigitte.de/gesund/gesun...
Danke.
Es müssen endlich alle über PEM Bescheid wissen!!
#LongCovid
#ME
We hope the good people of #SanFrancisco will forgive us for adapting a song about their city in 1967 to address the shocking and tragic events in #Minnesota in recent weeks. This is dedicated to Renée Good and Alex Pretti, and in solidarity. Our version is called "Minnesota" ❤️
youtu.be/BRHxXHZmVAM
For those who have started following us recently, you may not be aware that we have an online tribute site where you can upload photos of your loved ones and leave a dedication to them - here's the link. ❤️
28.01.2026 11:44 — 👍 21 🔁 7 💬 0 📌 0
I wrote this song on Saturday, recorded it yesterday and released it to you today in response to the state terror being visited on the city of Minneapolis. It’s dedicated to the people of Minneapolis, our innocent immigrant neighbors and in memory of Alex Pretti and Renee Good.
Stay free
Just because we have no biomedical cure for LC and ME yet - anybody who promises that is overpromising, we cannot allow ‚alternative healing‘ methods to step into that gap, because they are doing the same thing - overpromising.
#LongCovid
#ME
#LongCovid
28.01.2026 16:29 — 👍 2 🔁 0 💬 0 📌 0#LongCovid
#ME
