#pwMECFS
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trinity888.bsky.social
If GPs want to know how it is that #pwmecfs know so much about this illness, its because we are reading stuff like this, and figuring out what it means for us. 🤣🤓😴
This study used patient-derived induced pluripotent stem cell (iPSC)-derived myogenic progenitor (MP) cells to investigate ME/CFS-associated transcriptomic differences and identify potential drug-repurposing candidates.
October 19, 2026 at 5:53 AM
trinity888.bsky.social
This is a brilliant (but long) article about how knowledge on #me/cfs is produced and the role of #pwmecfs in research and dissemination.

I learnt so much about the history, what doctors learn (hint: nothing or worse), and the role of patient research and advocacy.
tomkindlon.bsky.social Tom Kindlon @tomkindlon.bsky.social · 29d
I was one of a number of patient scientists and advocates who was interviewed for this sympathetic, open access paper

"Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis"

www.sciencedirect.com/science/arti...

#MEcfs #PwME #epatient #epatients #CFS
Abstract It is usually assumed that patient and doctor know strictly different things: the patient knows the phenomenological aspects of their illness, and the doctor knows its medical aspects. I present a case study, that of myalgic encephalomyelitis, wherein, due to severely dysfunctional institutional knowledge production and transmission mechanisms, the medical aspects of the illness are on the whole better understood by sick people than by their doctors. Indeed, lay scientists within the patient community disseminate and produce science on their disease, ensuring that patients as a whole have reliable knowledge about their disease. By contrast, systemically produced and systemically maintained ignorance on the part of medical professionals is the norm, and may be beyond the specific case study I present.
October 5, 2026 at 7:03 PM
baszkom.bsky.social
Look who's on the wrong side of history *again*

#MECFS #LC #pwME #pwMECFS
Screenshot of some of the academics who signed a letter opposing punishment of "race realist" Nathan Cofnas. Cofnas was critical - often dishonestly so - in his opinions of Professor Jason Arday which many speculate played a significant role in his Arday's death. The screenshot show that one of the signatories to this letter is psychologist and PACE overseer Micheal Sharpe.
August 24, 2026 at 10:42 AM
me-with-me.bsky.social
1/11
Apologies, this a long 🧵.
As a #pwMECFS, diagnosed 25+ years ago, there have been many aspects of my life ripped away from me. Dreams cancelled, friends lost, goals changed. What has surprised me the most though is how much I miss reading and having the capacity to learn. Why does this
August 21, 2025 at 10:05 AM
me-with-me.bsky.social
I couldn’t get the whole article screenshot and on here.

Yet more research proving #pwME/CFS have been right all this time and the medical, political and media worlds have been neglectful, now borderline abusing pwMECFS. ME/CFS is real, time stop the lies! apple.news/AZmeGOQTOQJi...
Scientists find link between genes and ME/ chronic fatigue syndrome Large study suggests people's genetics could 'tip the balance' on whether they would develop the illness. Early findings from the world's largest study into the genetics of the condition pinpointed eight regions of the human genome that were substantially different in people with an ME/CFS diagnosis compared to those without the illness. The discovery suggests that several variants of genes commonly found in the population raise the risk of developing the illness, though many people will carry the variants and never acquire it. Over 150,000 more people in England have ME than previously thought, study finds Read more Prof Chris Ponting, an investigator on the DecodeME study at the University of Edinburgh, called the results "a wake-up call" that showed a person's genetics could "tip the balance" on whether they would develop ME/CFS. "These provide the first robust evidence for genetic contributions to ME," Ponting said. "There are many genetic variants that apply across the genome that predispose "This really adds validity and credibility for people with ME," said Sonya Chowdhury, chief executive of Action for ME and a DecodeME co-investigator. "We know that many people have experienced comments like 'ME is not real'. They've been to doctors and they've been disbelieved or told that it's not a real illness." Despite its long history, scientists understand very little about the causes of ME/CFS, though most patients report an infection before symptoms first appear. Typical symptoms include extreme tiredness, sleep problems, brain fog and a worsening of symptoms after physical or mental activities, known as post-exertional malaise, which can take weeks to recover from. It is estimated that 67 million people are affected by ME/CFS at an annual cost to the global economy of tens of billions of pounds. In the UK, the annual economic Prof Anne McArdle, who studies ME/CFS at the University of Liverpool, said the results, which have not yet been published in a peer-reviewed journal, provided "a solid basis" for future work that would hopefully help accelerate the development of a treatment for the devastating illness. Di Beata Godlewska, who studies ME/CFS at the University of Oxford, recently used magnetic resonance spectroscopy to scan the brains of people with ME/CFS and long Covid. Those with ME/CFS but not long Covid had high levels of lactate in the anterior cingulate cortex, a brain region that integrates information about effort and emotion. This points to disrupted energy metabolism in the brain, and impaired mitochondria, the battery-like structures that provide energy inside cells. Godlewska said "It's a very sad fact that people with ME/CFS are still disbelieved and the disease has been so neglected, especially when it comes to research funding. Hopefully this study will come with a benefit of both fighting the stigma, and convincing research funders that this is a truly biological condition."
August 7, 2025 at 1:57 AM
katjatrtilek.bsky.social
Liebe #pwMECFS aus #Esslingen und Umgebung: Wer es am Sonntag nicht zum ME/CFS-Awareness-Gottesdienst in die Osterfeldkirche ES-Berkheim schafft, aber trotzdem gerne sichtbar wäre, darf mit auf dieses Plakat!
Das Herz ist oben offen, so dass noch viele Namen hineinfallen können.
weißes quadratisches Plakat mit blauem Schriftzug "Im Herzen auch dabei:" und darunter ein großes Herz, das aus unterschiedlich großen Vergissmeinnichtblüten gestaltet und oben etwas offen ist
April 24, 2025 at 1:35 PM
truthbytwoheart.bsky.social
I’ve been my own unpaid caregiver, healthcare advocate, scheduler, artist, marketer & small business owner. It’s way too much for anyone to deal with, let alone a #PWD #PWMECFS & #PWLC among other disabilities, I truly need ongoing material support & daily sales just to survive!
April 10, 2025 at 12:53 AM
breannaweigel.bsky.social
Although Severe Myalgic Encephalomyelitis (ME) Awareness Month is coming to a close, people living with this complex chronic illness will continue to be impacted by its challenges and burdens.

#SevereME #SevereMECFS #SevereMEMonth #MECFS #MyalgicEncephalomyelitis #pwMECFS #pwME #MEAwareness
August 31, 2025 at 1:23 PM
breannaweigel.bsky.social
The lived experiences of #MECFS consumers have directly informed my PhD research. I am sincerely thankful to all the people with ME/CFS from whom I have had the opportunity to learn throughout my PhD candidature and who have made this research possible.

#MEAwarenessDay #WorldMEDay #pwMECFS #pwME
May 12, 2025 at 12:34 PM
breannaweigel.bsky.social
People with #MECFS have significantly poorer quality of life across all aspects of health compared with healthy people. Yet, the symptoms experienced by people with ME/CFS are often dismissed and the condition is poorly recognised in healthcare policies.

#MEAwarenessDay #WorldMEDay #pwMECFS #pwME
May 12, 2025 at 12:32 PM
breannaweigel.bsky.social
These findings further validate the real and physically disabling nature of #LongCOVID and #MECFS. This reiterates the need for access to multidisciplinary care and support services for all people with Long COVID and people with ME/CFS to manage these debilitating conditions.

#pwLC #pwMECFS #pwME
March 20, 2025 at 12:03 PM
breannaweigel.bsky.social
In this review of 16 studies, people with Long COVID and people with ME/CFS similarly experienced a pronounced burden on physical health and the ability to participate in typical daily activities, including work.

#LongCOVID #pwLC #LongCOVIDAwareness #MECFS #pwMECFS #pwME #MECFSAwareness
March 20, 2025 at 12:02 PM
breannaweigel.bsky.social
Long COVID and ME/CFS were associated with significant reductions in all aspects of quality of life in our recent systematic review at the National Centre for Neuroimmunology and Emerging Diseases.

Read the full article here: doi.org/10.1186/s129...

#LongCOVID #MECFS #pwLC #pwMECFS #pwME
Health-related quality of life in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Post COVID-19 Condition: a systematic review - Journal of Translational Medicine
Purpose Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Post COVID-19 Condition (PCC) are debilitating, chronic multi-systemic illnesses that require multidisciplinary care. However, p...
doi.org
March 20, 2025 at 11:59 AM
hannajow.bsky.social
#PwMEcfs who acquired it as children ⬅️ ✋️knew our exposure certainly didn't lead to immunity.

#MEcfs #chronicillness #chronicdisability #NEISvoid #MEDsky
kashprime.bsky.social Kashif Pirzada, MD @kashprime.bsky.social · Jan 15
Wow, big surprise. It turns out that getting sick more often does *not* make you stronger, but actually weakens you and makes you more prone to illness. The idea that 'kids just need to be exposed to bugs' needs to die. jamanetwork.com/journals/jam...
January 16, 2025 at 1:09 AM
stevefifield.bsky.social
EC: "Is there *anything* to be said for having just one more Mass [ #GET #PACE trial] ?

FT: "We don't have time! All - for God's sake just shut up, we need to come up with a practical solution"

#pwMW
#pwLC
#pwMECFS

youtu.be/_7PSzraa6n0
Father Ted - Speed 3 Mass
Father Ted - Speed 3 Mass
youtu.be
June 16, 2024 at 10:01 PM
stevefifield.bsky.social
Distressing and happening right now - The family of ANOTHER young woman with severe ME are scared their daughter is going to DIE in an NHS hospital:

www.thecanary.co/uk/analysis/...

#MECFS #pwMECFS #pwME

Please share and add hashtags I may have missed.
The family of ANOTHER young woman with very severe ME are scared their daughter is going to DIE in an NHS hospital
After public outcry & media coverage over #BringMillieHome, the NHS is now abusing another young woman, Carla, who lives with severe ME
www.thecanary.co
April 24, 2024 at 6:52 PM
weibsbild.eurosky.social
pwMEcfs ist zumindest international auch etabliert, denke ich. Und ja, Worte und (Selbst)Bezeichnungen fehlen an vielen Stellen.
August 17, 2024 at 8:15 AM
weibsbild.eurosky.social
Keins muss sich erklären. Ist/wäre nur hilfreich für Kontext. (Und ja, natürlich gibt es genug Dritte, die #pwMEcfs erklären, dass sie sich einfach anstrengen sollen.)

Jedenfalls - schön, wenn Du diese "unerfreuliche Phase" so selten erleidest u Bewegung bei Dir gegen d "bleierne Müdigkeit" hilft.
July 16, 2024 at 10:53 AM