#mecfs search results
Nearly four years in and I don’t understand this disease. I’m crashing so hard tonight. Heart pounding. Cheeks flushed. Nausea. Can’t think. I barely did anything today. Why?! #longcovid #PEM #MECFS
Sieg vor dem Sozialgericht: Hamburger #MECFS-Patient darf ins Pflegeheim ziehen (Paywall) abendblatt.de/hamburg/altona…
#MECFS #mussmichmalauskotzen #Blasenspieglung Ich habe ja seit einem halben Jahr ständig Blut im Urin und Blasenentzündungen. Heute war die Blasenspiegelung- habe noch nie etwas so gewaltvolles erlebt! Meine Klitoris und ein Stück Damm ist eingerissen- es blutet noch immer.
the more I see patients with #mecfs or #longcovid the more I recognize how much medicine and science have to learn on chronic conditions and the impact of infections on health. and I see severe infections daily. but these conditions are on another level. Luckily I have 30 years
Olympian Montell Douglas presenting BBC Lifeline for Action for ME “For years, I’ve had chronic pain due to a medical condition and know how difficult it can be to live with. And those with ME also have to deal with social stigma and a lack of support.” #MECFS
Professor Chris Ponting on the 116 blood molecule differences his team found in people with #MECFS “This is not a psychological disease” people did not alter their blood molecules just to “spook the psychiatrists”. Clip from @hope4mefibroni 2026
#MECFS patients and advocates not only had to fight flawed research and harmful treatments, they also had to deal with attempts to discredit them, like a PACE author calling an MP “unbecoming” and accusing MPs of defamation and libellous comments for scrutinising his work.
.@risklayer @MECFSResearch haben ihre z.T. auf Schätzungen beruhende Kalkulation der ökonomischen Kosten von #LongCovid #MECFS für 2025 aktualisiert - bei allen Unsicherheiten zeigt sich so der Handlungsbedarf allen, denen die Not der Betroffenen als Argument nicht reicht.
I once lay in bed thinking: if I ever made it back from the worst of #MECFS, just seeing the sky again would change me forever. Now I’ve been out of work for two weeks and I’m stressed and spiraling. Funny how fast survival turns back into pressure. Welcome back, Martin.
I hope I don’t get misinterpreted but I think i’m safe to consider that the future of a patient with #MECFS is more unpredictable nowadays that many cancers
A new visual from @wecrunchme showing how ME/CFS creates extreme physical limitations - worse than those typically seen in patients with cancer, heart disease, or other common chronic conditions. This uses the SF-36 measure, with results from Nacul et al. (2011) paper. #MECFS
Untersuchung wegen Myopathie in Muskelambulanz einer Uniklinik. Dass ich die Diagnosen von einer Neurologe noch erleben darf. #MECFS #Flourchinolone
Dr William Weir on how the influence of Simon Wessely and his colleagues created an overriding tendency among doctors to insist that #MECFS is a psychological disorder. Clip from @hope4mefibroni Collaboration for Change 2026
Most of the time I feel really good. I can't believe I'm saying this. No sickness feeling anymore, more physical energy with a nano amount of sports (running a few meters with my dog). But, I still have to be careful not to overdo it. So, no cure for #MECFS Improvement!
I was just out with my dog in nature. I looked up at the deep blue sky through the treetops, and it hit me hard. Five years ago, I was certain I’d never see the sky again because of #MECFS. Now, it’s the small things. I feel grateful.
Hab mich rausgeschleppt nach langem, um meine Freundin nochmal zu drücken, bevor sie wegzieht, und mit ihr nochmal vor einem Café zu sitzen. Jetzt ist ihre Bahn unterbrochen und die Strecke voll gesperrt. Ich liege vor einem Café. #MECFS
My HRV is an absolute disaster because of #MECFS. It hasn’t changed in years. Someone who actually knows what they’re talking about: how bad is it, doctor? How much time have I got left?
GM Fam, how are you doing? I’m preparing to share for free in my articles here my off-label step by step approach for #longcovid and #mecfs while waiting for better evidences. any other things you would like me to discuss? Don’t forget tomorrow I am live in a webinar with
People with #MECFS (from any trigger), do you do any sort of daily tracking of how well you feel? I'll explain why I'm asking in this thread.
International ME/CFS Conference, 07./08.05.26 Ich freue mich auf die Tagung– auf Forschung, neue Daten und vor allem auf echte Perspektiven für Betroffene. Hier könnt Ihr Euch für die kostenfreie Teilnahme registrieren: events.mecfs-research.org/en/events/conf… #MECFS #PEM #PEMisNotNegotiable
as I said several times, immune modulation is the key for conditions like #longcovid and #mecfs that are conditions characterized by an immune response unable to down regulate after specific triggers
NIH are launching a phase 1 trial of Cancer drug Keytruda for Long Covid. It works by blocking the PD-1 receptor on T cells which releases the brake and reinvigorates them, boosting the immune systems ability to clear viral reservoirs clinicaltrials.gov/study/NCT07388…
1/2 ***TW: Very upsetting Content *** America: Research: Investigating the ME/CFS experience through qualitative analysis of memorial entries "Researchers at Iowa State University have now collected the memorial records of 505 people who died with CFS/ME [written ME/CFS in the
@GrachStephanie congrats on this informative study! So much to unpack with these findings, but your study underscores a huge gap in clinical care and a lack of education on management of #MECFS among healthcare practitioners.
Findings from a new study suggest potentially helpful medications used by myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) specialists may be underutilized to treat ME/CFS in primary care. Read this early access article here: doi.org/10.1370/afm.25…
Got this in the mail from the only #mecfs clinic we have in Ontario. The online course is DNRS (brain retraining). I did DNRS 10 years ago when I was moderate. I did not improve. I am now very severe- totally bedbound. Yelling “STOP STOP STOP!” at my symptoms did not heal me.
Danke für Ihr Engagement und Unterstützung!!! Es sind viele wichtige wissenschaftliche Erkenntnisse gewonnen worden - nur hat sich bislang weder das Puzzle gefügt noch der Erkenntnisgewinn für Betroffene entsprechend in gute Versorgung gewandelt. Ein Funken Hoffnung 🫶 #MECFS
Our #BlueSunday fundraiser for ME! Tea party in a box kits - $30. Includes tea, treats, and some fun! There is a no dairy/gluten option, and an outside of NC option. Order by 5/8. Order form & donation info: tinyurl.com/34766xpd #mecfs 3/3
We’re celebrating these wins at a Virtual Blue Sunday Tea Party for ME on 5/17 @ 1PM ET. All invited! Tea & cozy fun. Join us! (Optional $5 donation, no box req’d, See $30 tea/treat box info below.) #BlueSunday #mecfs #MEAction #MillionsMissing 2/3 meaction.net/event-details/…
Big news for ME awareness in NC 📣🧵 1⃣Raleigh mayoral proclamation recognizes 5/12 as ME Awareness Day 2⃣Governor Stein gives letter of support 3⃣Our Blue Sunday event is May 17 Officials noticing ME/CFS disables millions. We need a cure. #MillionsMissing #mecfs #MEAction 1/3
To enter: 1. Donate to Nevra’s GFM or PayPal 2. Send a screenshot of the donation to @ helen_melon__ (on instagram) £5 = 1 entry £12 = 3 entries Please donate/share: paypal.me/SaveLizNevra gofundme.com/f/save-nevra #SaveLizNevra #MECFS #pwME #ChronicIllness
Our Scientific Director, Jaime Seltzer, is one of the co-authors of this new paper in the @AnnFamMed. "Underuse of Pharmacologic Therapies for #MECFS Prior to Evaluation at a Specialty Clinic" This study has been chosen as an early-access publication! #MECFS #pwME
Findings from a new study suggest potentially helpful medications used by myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) specialists may be underutilized to treat ME/CFS in primary care. Read this early access article here: doi.org/10.1370/afm.25…
So great. If you have #VerySevereME, please do participate if you can and submit your videos and photos for this awareness project. 🔁 #mecfs #longcovid
This year #MillionsMissing is lobbying MPs for a service for the very severe. This action grew out of the failure of the DHSC to start commissioning a specialisted service for the very servere.
Ask Me Anything (about Medicaid) with our Advocacy Director Ben HsuBorger is coming up on Tuesday, May 5th at 3 p.m. ET. We want your questions! Email your question to [email protected] or ask live on MEAction's Instagram. #PwME #Medicaid #MECFS #LongCovid #disability
The Battle of Life vs Routine Transcript from spontaneous video: (that I can now make! 😊) How often do we have to decide, as ME/CFS patients, between making sure we don’t crash and playing it safe to stay below our energy limits, and having some sort of life-affirming
新型コロナの脳病理では、脳を守る壁に穴が開いているだけではなく、内向きに積極的に炎症を送り込む状態になっていた。脳を守る境界自体が大きく書き換えられていることがわかったという最新のレビュー。毛細血管を外側から支えるペリサイトという細胞のマーカーも減少。ウイルスの大量複製よりも脳の
wünschte, für Menschen die das nicht selber schaffen, würden sich enge Menschen einsetzen. Immer weiter runter crashen birgt halt die Gefahr, dass man irgendwann auf einem niedrigerem Niveau hängen bleibt. 😞 #ME #MECFS
Heute mit dem e-fix in der Esslinger Altstadt die Sonne genossen. ☀️ So schön es war: Ich bin erschrocken, wie schnell sich alles verändert. Nur die historischen Gebäude stehen ungerührt an ihrem Platz – eine Beständigkeit, die mir heute richtig guttut. 🏛️❤️ #MECFS #Esslingen
ICYMI: Watch "The Discovery of Target Antigens for Dysfunctional T Cells in #MECFS & #LongCOVID" to learn how this work could produce new disease biomarkers & suggest new treatments for patient subgroups. 🎥 youtu.be/-g3Zz8DwK_c #MEAwarenessHour
1/4 Nach dem psychiatrischen Konsensuspapier folgt nun die Ausweitung des Anspruchs der Psychiatrie: Im @DocCheck Artikel zu #LongCOVID #MECFS wird eine generelle Zuständigkeit der Psychiatrie formuliert: Psychotherapie für alle, auch ohne Komorbidität. doccheck.com/de/detail/arti…
I can’t act. I can think of worlds from simple to profound. But I can’t act on making any of it. So I sit and watch it. And I watch the world pass by without it. And without me. This is the torture of #MECFS. We are HERE and we are ALIVE but we cannot act on LIFE to LIVE.
Untersuchung wegen Myopathie in Muskelambulanz einer Uniklinik. Dass ich die Diagnosen von einer Neurologe noch erleben darf. #MECFS #Flourchinolone
Why is the view so widespread that PEM in #MECFS cannot be demonstrated objectively? There are so many metrics that can show it. Of course, one can always claim it is due to a lack of motivation, on a subconscious level. So in that respect, things are slowly improving.
#LongCovid & #MECFS? „Das Gehirn gehört allemal dazu-und wie wir es zwischen Psychiatrie, Neurologie und Psychosomatik aufteilen, ist Feinarbeit.“ (Frank Erbguth, DGN-Talk, 19:00–19:22) youtu.be/iFPDoA7Y7x0 Vier Monate später: Off-Label-Liste (4 Wirkstoffe, 2 Antidepressiva).
1/4 Die aktuelle Entwicklung bei #LongCovid und #MECFS folgt einem Muster: Psychosomatik, Neurologie & zuletzt Psychiatrie formulieren Versorgungsansprüche. Das neue Konsensuspapier rahmt Post-COVID als psychische Erkrankung, „psychiatrische Expertise sei zwingend erforderlich“.
1/9 „Der Stellenwert der Psychiatrie in der Versorgung und Forschung von Post-COVID" - so der Titel eines neuen Konsensuspapiers im Nervenarzt. In der Zusammenfassung heißt es: „Abgrenzung zu anderen psychischen Erkrankungen." Damit ist der Referenzrahmen gesetzt. #MECFS #PEM
I was just out with my dog in nature. I looked up at the deep blue sky through the treetops, and it hit me hard. Five years ago, I was certain I’d never see the sky again because of #MECFS. Now, it’s the small things. I feel grateful.
Schutz ist Versorgung. Bei #MECFS heißt das: #PEM erkennen, keine Belastungssteigerung, Grenzen respektieren. Schwer&schwerst Erkrankte waren nicht „schon immer so krank“. Viele sind es geworden- durch fehlende Behandlung, Fehlbehandlungen, Reha, fehlenden Schutz. #LearnAboutME
1/4 Die aktuelle Entwicklung bei #LongCovid und #MECFS folgt einem Muster: Psychosomatik, Neurologie & zuletzt Psychiatrie formulieren Versorgungsansprüche. Das neue Konsensuspapier rahmt Post-COVID als psychische Erkrankung, „psychiatrische Expertise sei zwingend erforderlich“.
Severe #MECFS can often feel like your body is a war zone. I can’t imagine living with it and being in a war zone aswell - with bombs falling outside your home. I’ve just donated to help Daryna escape from Ukraine to Germany.
Eine europäische Umfrage zeigt, dass die Mehrheit der Menschen mit ME/CFS überwiegend hausgebunden- und nahezu 1 von 5 größtenteils oder vollständig bettlägerig ist. #MECFS
My friends are amazing, one local press article at a time #MECFS #LongCovid
My wonderful friends worked on an association to raise awareness on MECFS locally, organize events and support me against v.severe ME. Even if I can't see them or can barely stay in touch with them, they are working on it since months, and it has now be officialized. I'm not
My HRV is an absolute disaster because of #MECFS. It hasn’t changed in years. Someone who actually knows what they’re talking about: how bad is it, doctor? How much time have I got left?
4. Fachtag „Long Covid, Post Covid, Post Vac, ME/CFS“ - Versorgungsstrukturen in MV im Fokus- (Hybrid-Veranstaltung) 25.03.26 von 13:00 BIS 17:00 UHR #MECFS #PEM #NoGET #NoRehab #PEMistnichtverhandelbar Anmeldung zur kostenfreien Online-Teilnahme: youtube.com/live/EVWvqGOQe…
A new visual from @wecrunchme showing how ME/CFS creates extreme physical limitations - worse than those typically seen in patients with cancer, heart disease, or other common chronic conditions. This uses the SF-36 measure, with results from Nacul et al. (2011) paper. #MECFS
Das Psychotherapie-Netzwerk ME/CFS hat eine Stellungnahme zum DGPPN-/DGPM-Positionspapier zu #PostCOVID veröffentlicht: wichtige Klarstellungen, aber problematische Grenzverwischungen mit Folgen für Forschung, Versorgung & Patientensicherheit. #MECFS #PEM drive.google.com/file/d/1UlBtzg…
ME/CFS weist eine der schlechtesten gesundheitsbezogenen Lebensqualitäten aller bekannten Erkrankungen auf #MECFS
#MECFS is a severely disabling illness. Patients bear not only symptoms but also negative stereotypes and inadequate care. Much of the work of informing the public, offering support, and lobbying for respect and research funding falls on patients and families. #MEAwarenessHour
4.Fachtag, Rückblick: Was passiert, wenn man #MECFS #PEM nicht versteht? Man empfiehlt Belastungssteigerung, bewertet Schutz als Vermeidung, Rückzug als Problem. Und genau dadurch riskiert man die Gesundheit Betroffener. Das ist unverantwortlich! #LearnAboutME #NoGET #NoRehab
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