Millions Missing Finland

1/ Miten toimia, kun asiallista ja asianmukaista hoitoa ME/CFS-sairauteen ei ole saatavilla? Suomensimme @doctormom63 ketjun aiheesta: facebook.com/photo.php?fbid…

Really good explanation of Post-Exertional Malaise (PEM), the hallmark symptom of ME/CFS, and why pacing activities is so important. Edited clip from German TV science program.

”On huolestuttavaa, kuinka huonosti long covid ja sen kansanterveydelliset vaikutukset Suomessa tunnistetaan” kauppalehti.fi/uutiset/a/e5f3…

The NIH Director, @DrJBhattacharya, indirectly calling out MDs worldwide for failing to recognize, among other conditions, ME/CFS is certainly a step in the right direction. Paraphrasing him: unless you’re an amazing doctor who is honest and compassionate, you will want to move on to the next patient.

PolyBio is putting infection-associated chronic illness research on the map! We’ve funded more than 25 universities’ projects investigating drivers of Long Covid, ME/CFS, Alzheimer’s, and more. Can you find the closest PolyBio-supported research site near you? 👇🏻 Check out more stats in our 2025 Impact Report: polybio.org/impact-report/

#ME Millions of us are simply left to rot in our beds until we die. Apart from the human tragedy, it’s a ridiculous economic blind spot. Given funded research leading to effective treatment we could work, carers could work, no benefits needed and our lives returned to us.

Tessa Munt MP calls for urgent action to accelerate #MECFS research. The UK has spent just £10 million over 12 yrs ~60p per patient/year. Four times more went on a helicopter for a former PM, 12 times more on a bat tunnel for HS2. Why isn’t ME a strategic research priority?

Tessa Munt MP opens the #MECFS debate, noting ~400,000 have ME in the UK, & the total could be much higher including people with with long COVID. She highlights decades of substandard, sometimes harmful care, pitiful funding, and the outdated view of ME as psychiatric.

Our thanks to @tessamunt for leading today's Westminster Hall Debate and speaking so powerfully about the plight of people with ME, urgent need for research funding & a service for severe ME. Please join us in thanking her. #MyalgicEncephalomyelitis #VerySevereME

ME debate: Thank you to all those who have encouraged me in tabling this debate, and those who have written to their MPs about it. The debate starts at 4.30pm. Thanks to @TomKindlon for providing details👇🏽 #pwME

Solve ME: “Hyperstimulated Innate Immune System Can Drive ME/CFS-Associated Fatigue and Post-Exertional Malaise” “These results suggest possible treatments for people with ME/CFS” solvecfs.org/hyperstimulate…

@Suomi2017 @grok miten arvioit Tekniikan maailman uutisoiman diagnostisen testin ( ME-sairaus G93.3) potentiaalin, uskottavuuden? Kerrotko testin ja tutkijaryhmän taustasta tarkemmin? Miten uutinen testistä on otettu vastaan? tekniikanmaailma.fi/kroonisen-vasy…

@FinlandMissing Olemme seuranneet taisteluanne pitkään. Onko tästä testistä tulossa apua? Voimia ja valoa toimiinne. Kuvakaappaus fasestamme ja sen kommenttiosiosta: facebook.com/share/p/17JWGd… #hallitusohjelma #sosiaaliturva #oikeusturva #mecfs #longcovid #diagnoosi #sairaanhoito

“Most of the people I’ve seen with #MECFS are so much sicker than my cancer patients.” Dr. Fridbjörn Sigurdsson, a former medical oncologist now focused on ME/CFS, speaking at the 2025 @Invest_in_me conference. Thanks to @mecfsskeptic for finding the clip.

Fibromyalgia ei ole toiminnallinen häiriö tutkimusten mukaan, vaikka se Suomessa siksi luokitellaan. Vääristä luokitteluista seuraa väärä hoito. @STM_Uutiset @patkeskus @ValviraSoteValv

Very strong item from New Zealand. A mother who in desperation sets up a care home for people with severe ME. Including her daughter. And the amazing @drannanz who really cares about us. ❤️ youtu.be/DsOAq6cs564?si…

🕯️ Today we honour the memory of those we've lost to Severe ME. Their lives mattered. Their suffering was real. We remember them and continue fighting for those still battling this devastating illness. #SevereMEDay #InMemory #SevereME #NeverForgotten #HiddenButHere #BeTheLight

DecodeME pre-print reported eight "genetic signals" involving immune function and the nervous system in people with ME/CFS. Many viewed the findings as of potential significance. One person did not. virology.ws/2025/08/07/tri…

This has been my reality for 32 years. #SevereME No real treatment because there has been no serious research funding. The psych/behavioural lobby make sure of this despite ample proof of physiological damage. How many more generations will live in dark rooms alone and ignored?

A Moment of Silence for Severe ME/CFS Patients Today we honor the sickest among us.  The ones who have been least lucky among some of the least lucky people on earth.  It is only bad luck that lands us with ME/CFS, none of us did anything to deserve this or to cause this.  And no one with severe ME/CFS did anything to wind up sicker than anyone else. ♿ 𝘈𝘤𝘤𝘦𝘴𝘴𝘪𝘣𝘪𝘭𝘪𝘵𝘺: 𝘓𝘪𝘴𝘵𝘦𝘯 𝘵𝘰 𝘵𝘩𝘪𝘴 𝘱𝘪𝘦𝘤𝘦 𝘳𝘦𝘢𝘥 𝘢𝘭𝘰𝘶𝘥: whitneydafoe.com/mecfs/audio/25… The person most dear to me in this world has gone from moderate to extremely severe this spring and I weep for her everyday.  Because I know exactly what she is going through - it is absolute hell on earth - and I am completely helpless to help her or stop it.  All I can do is be here for her so she is not alone. People living with severe ME/CFS lose every single thing that defines being human - every single one - and experience symptoms that no human should have to endure.  Unworldly symptoms that you could not imagine in your worst nightmare - until you experience it.  Dehumanizing, incapacitating, uncontrollable, reality bending.  It is torture for every single second of existence worse than anything most humans on earth will ever experience. And these symptoms are layered with a lack of acknowledgement from the world that leaves these patients in the shadows of society as if they do not even exist anymore.  Or worse, lost on their own, abandoned and destined to die alone on the streets.  See my post "The True Horror of ME/CFS" where I walk you through the logical, factual steps that lead you to the hidden reality of what many severe ME/CFS patients face - dying alone on the streets. whitneydafoe.com/mecfs/?post=th… Think about that combination.  Living in a world worse than Hell, and being completely abandoned by society with no help and a feeling of no hope to ever get better, nothing to look forward to but endless agony and rejection and loss.  Because when you are in that pit of severe ME/CFS, you have no contact with anyone or any way to know about research progress or anything hopeful.  You are isolated and alone with nothing but your mind and punishing, relentless, never ending suffering. When you think about this, it is not a surprise that so many severe ME/CFS patients take their own lives.  But it is absolutely, unconscionably tragic and must end with real care, real treatments, and real, tangible hope. Anyone reading this is better off than those who are most severe and we should all share the horrifying reality of our lives - whatever stage of ME/CFS we live with - through writing and photographs and anything else that makes sense to us.  And hope that someday someone listens.  But until the world turns an ear, an eye or hell, I’ll take a fucking toe, all we can do today is have compassion;  Offer our prayers and hopes and wishes.  And take a deep bow of respect to those clinging onto this life desperately, in absolute agony emotionally, physically and spiritually. Today let’s take a moment of silence to honor severe ME/CFS patients.  Really.  Let’s all take a moment - even just 1 minute - right now and just hold still in silence with our eyes closed like many severe ME/CFS patients live all day everyday - and think of them.  You might not think this makes a difference, but it does, and I am asking you - all of you - please - take a moment for the least lucky amongst us. To all those living in silence and darkness.  Today we take a moment in silence and darkness to honor your courage, your bravery, your resilience, your strength, and we acknowledge your profound suffering, agony and loss. We are here, we are praying for you and we understand.  And we are not going away.  We are right there beside you.  We are all in this together and stand united until the backs of society are turned towards us and the light of science and care and awareness finally shines. Love, Whitney 💙 #MECFS #MECFSAwarenessDay #SevereMECFSAwarenessDay #pwME

#SevereME is devastating & even 40+ years after my own (mild) diagnosis I can only guess at the pain & suffering. Hilary, Cereth & Craig let me take photographs, thank you. #mecfs #SevereMEDay #severemeday2025 #LivesUnlived Info on exhibition and book tinyurl.com/58khuv8z

Last week, we hosted @VirusesImmunity to discuss her Catalyst Award-winning study, “Probing Functional Autoantibodies in Patients with #MECFS." She shared how her work lays the groundwork for targeted treatment & advancing diagnostic tools. Watch here: youtu.be/9ar0xtGwmrQ?si…