4 weeks to go until the International ME/CFS Conference 2026 🗓️ On May 7 & 8, leading researchers share the latest on #MECFS and #LongCOVID – watch it live via livestream. Register now ➡️ https://t.ly/us026

TW: assisted suicide 30 min interview with Samuel’s mother and doctor. Samuel developed #MECFS after a Covid infection and chose assisted suicide. Before his death he asked for his story to be used to raise awareness. English Subs (edited with ChatGPT) youtu.be/_w0v7he88Uo?...

Dr @binitakane.bsky.social explains how a theory that #MECFS is caused by deconditioning and a fear of exercise permeated medicine and framed the illness as psychological. This led to the patients being neglected, gaslit, and some would say abused. Causing huge trauma for the community.

Clip 2 (WDR German TV): Dr Astrid Weber from the Long Covid Clinic in Koblenz says ME/CFS cases have exploded since Covid. ME/CFS isn’t new — despite being around for decades, many doctors know little about it. She wants to educate them. It’s a physical, not a mental, illness.

need one of those german train-car noun constructions for ‘the sense of betrayal a woman suffers when a thinker who was hugely influential to her turns out to be the same bog standard worthless misogynist as everyone else’

Te puhuitte teoin -mielenosoitukset kautta Suomen 14.2.2026 kello 14. Alla olevissa paikoissa. Listasta puuttuu Tampere, jossa on mielenosoitus myös Hämeenpuisto, Vapauden patsas. Laittakaa tietoa eteenpäin. Täällä ei ole organisoijien puolesta ollut tietoa. Se löytyy Facesta tai IG:stä.

@dear_chronic_pain

“Screaming Immune Activation”: Major Lipkin Study Finds ME/CFS Systems Folding Under the Stress www.healthrising.org/blog/2025/09... Screenshot from AMMES December 2025 newsletter #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Wow this is a great essay. #NEISvoid

The Sick Times @thesicktimes.org : Less than 20% of Long COVID trials involving exercise even mention post-exertional malaise thesicktimes.org/2025/11/21/l... Experts say testing exercise is “money down the drain” and won’t advance understanding of Long COVID. #LongCovid #PEM

Stand By ME/CFS! We are banding together globally to raise awareness, demand health equity and seek a path towards the cure for ME/CFS. Please lend your voice and become an ally today! #StandByMEcfs #StillSickStillFighting #MEcfs #pwME #TeachMETreatME #EndMEcfs #GlobalVoiceforME #wishtreeforyokoono

Shared with permission #SevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Tää suomen säästöpuhe velan taittamisesta vertautuu mun mielestä hevosen hoitoon. Leikataan hevoselta ruoasta 20% ja ihmetellään, miksi se ei jaksa juosta kovempaa. Leikataan ruoasta 50% ja ihmetellään samaa. Lopuksi hevoselta leikataan kengät ja mietitään, miksi se ei taaskaan juokse kovempaa.->

Hope they get the required amount!!

One of the big COVID facts that tend to make people go deer in headlights is the high percentage of asymptomatic infections. Unfortunately these infections can still cause you or others problems months or years later. This was known back in 2020 but shushed up afterwards.

"Long COVID-19: a Four-Year prospective cohort study of risk factors, recovery, and quality of life" bmcinfectdis.biomedcentral.com/articles/10.... "Nearly 29% of post-acute COVID-19 patients developed long COVID-19" #LongCovid #PASC #Novid

See you soon for our genetic results webinar! Spots are limited to 3000, and registering does not guarantee a spot. Don't worry - we will also be sharing it live to our Facebook page at the time facebook.com/decodeMEstudy as well as recording it so that you can watch it back.

On tärkeää, että pitkää koronaa käsitellään edelleen mediassa – aihe on yhteiskunnallisesti merkittävä ja koskettaa monia. Käsittelyn tulee kuitenkin olla monipuolista, tasapainoista ja rohkeaa. Tällä hetkellä kukaan ei tunnu uskaltavan kyseenalaistaa HUS:n Pitkittyneiden oireiden klinikan […]

I feel like I'm trapped in a symptoms cyclone

#freedomflotilla #madleen #gaza #palestine #greta

#madleen #flotilla #gaza #greta

Clips from The Golden Girls (1989): Dorothy sees a neurologist after months of #MECFS symptoms. He tells her there’s nothing wrong, it’s just ageing — and suggests a psychiatrist. She begins to doubt herself—until Rose comforts her saying “Doctors don’t know everything.”

Mikä pettymys, (vaikkei yllätäkään), hallitukselta jää uupumaan teot palestiinalaisten kansanmurhan pysäyttämiseksi.

Kas, kerrankin muutakin kuin liiran laarumia!

Israel suorittaa kansanmurhaa: EBU päästää palkintopallille. Espanja puolustaa ihmisoikeuksia: EBU uhkaa sakoilla! – Kun ihmisoikeudet ovat vaakalaudalla, hiljaisuus ei ole vaihtoehto. Rauhaa ja oikeutta Palestiinalle!

Germaine's poem from 25 years ago is deeply moving and a powerful reminder of why awareness and support are still so needed. Thank you for sharing💙 #mecfs #MEawarenessday.”

Reminder that half the population of Gaza are children. www.theguardian.com/commentisfre...

In what world is this acceptable? In what world can any country continue to provide weapons to a nation who declares it will seize all of the land of another people and remain there as long as it wishes, perhaps forever? In what world do other governments remain silent about this? Sadly, in ours.

Thousands demand withdrawal of review article recommending exercise therapy for chronic fatigue syndrome Links in image: www.cochranelibrary.com/cdsr/doi/10.... retractionwatch.com/2025/01/23/t... Screenshot from the AMMES May email newsletter #MEcfs #CFS

“Shared Metabolic Changes Among People with ME/CFS, Fibromyalgia, or Gulf War Syndrome Suggest Common Biomarkers and Treatments” Summary article from the Solve ME/CFS Initiative @solveme.bsky.social solvecfs.org/shared-metab... #MEcfs #CFS #Fibromyalgia

ME Association: Leading UK Charity invests in Canadian trial of drug treatment for #MECFS & #LongCovid We've provided funding to Dr Luis Nacul (principal investigator) for an important clinical trial in Canada to test the potential benefits of low-dose naltrexone #LDN meassociation.org.uk/h5h2

So much to say, but don't even know where to being. As my #lc#me turned 3yrs it became 15yrs since my #stroke. Went through new set of neuropsychological tests and was faced with the aftermath post stroke.. things I had blissfully (purposefully) forgotten after so much #medicalgaslighting

I keep saying it: scientists know exactly what #BirdFlu can do in the brain, and it is not good. SARS-CoV-2 was a new virus we had to learn about. #H5N1 is not.

Science moves forward, even if some desperately cling to outdated beliefs.. #longcovid #pem #pwme

🌍 The Perfect Storm: Myalgic Encephalomyelitis (ME) and the Long COVID Crisis 🌍 🔍Together, we need to fight for greater visibility, support, and change in ME/CFS research! #MyalgicEncephalomyelitis #MECFS #LongCovid #MedicalCrisis #PandemicManagement #HumanitarianCrisis

😷 Here’s what’s happening this week in #LongCOVID research: bit.ly/4hsEm2Y 💌 Sign up for our newsletter and get updates delivered directly to your inbox every week! thesicktimes.org/newsletter/

Today @thesicktimes.bsky.social: an honor to have the great @davetuller1.bsky.social writing for us, covering the recent scandal at Cochrane over their flawed ME/CFS review. thesicktimes.org/2025/02/04/r...

Ensi viikolla! Mukaan mahtuu. #pitkäkorona #longcovid

My newest video 'Why Elon Musk Keeps Attacking Wikipedia' is out on my YouTube channel! You can find the link in the comments!

Petition: Prevent forced psychiatric hospitalisation of Very Severe ME patient in Denmark ”Doctors have told Line that if she does not get out of bed during the next 2 weeks, she will be forcibly committed to a psychiatric hospital.” www.change.org/p/prevent-fo...

Darren's struggle with #longcovid is a powerful reminder of how we suffer silently. The moment he spoke about wishing to go for a walk with his children, I broke down in tears -this is also my wish. We urgently need more research and treatments -everyone deserves the chance to live a full life💙

Tärkeä tiedote #pitkäkorona #longcovid sairastaville! #SuomenCovid-yhdistys järjestää verkko-infotilaisuuden, jossa jaetaan uusinta tutkimustietoa + fyssarin luento kuntoutuksesta. Alla lisää tietoa tilaisuudesta! Jaa tietoa eteenpäin, jotta mahdollisimman moni pääsee hyödyntämään tilaisuutta💙

This post hit me deeply. Books have always been a huge part of my life, and losing the ability to read (yet again) is crushing. While it's comforting to know I’m not alone in this, it’s also heartbreaking that so many of us are going through this. 💙 #pwme #lc #ChronicIllness #Books

“Terrible things are happening outside. Poor helpless people are being dragged out of their homes. Families are torn apart. Men, women, and children are separated. Children come home from school to find that their parents have disappeared.” Diary of Anne Frank January 13, 1943

When a government tells us, within the course of one week, that we can't have new hospitals but must have new runways, you know that it is not working on our behalf, but on behalf of economic power.

The #PACEtrial: controversial study that has influenced #me/cfs treatment worldwide for years. Now, with its flaws exposed and treatment guidelines revised, the same flawed narrative threatens #longcovid patients. The fight continues!

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...

Immunity debt is mentioned regularly by the press but it’s a completely unproven scientific theory. It wasn’t even conceived until after 2020 and yet it’s often on the news like science fact. healthydebate.ca/2023/01/topi...

SarsCov2 is not a seasonal respiratory virus. It is a neuro -vascular virus more akin to EBV or HIV than flu. #maskup #medsky