#fightmecfs 검색 결과
Explains why GET was such a disaster and so detrimental when it was pushed on so many with post viral #MECFS (including myself) by NHS physios. Then we were told the resulting pain and fatigue was mearly negative thinking and deconditioning and mindfulness would sort it out.
The biggest mistake active people make after a viral illness is returning to their normal training load too soon. You're not out of shape. You're inflamed. Your mitochondria aren't producing energy efficiently. Your tendons aren't ready to absorb force. Pushing through will often
I wish doctors would dedicate as much effort to researching these conditions as they do to criticizing patients.
Over-diagnosis / misdiagnosis / self-diagnosis of EDS, MCAS, POTS, & Lyme is a real problem, and it would appear that there is little appetite by medical professionals to discuss this issue publicly.
ME/CFS is perhaps the only condition where ‘mild’ is defined as a loss of 50% of functioning. It’s hard to think of another condition where such a loss of capacity would be seen as ‘mild’.
"Hold the Line!" Thank you for using your precious energy to write a post to engage our warrior spirits! #FightMECFS #EndMECFS #FuckTheNIH
Does anyone feel restless when they feel like enough oxygen isn't going into their brain or body or lungs or whatever? I'm feeling restless, feel like screaming and feel like lying down in a quiet room. But I still have physical energy.
A new ME/CFS study found signs that people with more severe illness may show different spinal fluid protein patterns linked to immune activity, blood clotting, cell stress, and brain-related signaling. People with POTS also showed a different pattern. Simple breakdown 🧵
Respiratory physiology appointment today for breathlessness and wheezing. Test (lots of very hard blowing into a machine) showed symptomatic but normal-ish lung function. Got home and crashed. #MECFS
Good evening. Tonight's Twitter Takeover sees @BluesVCancer using this account until 9pm. Please remember that it's us you are speaking to, not Nev. He has kindly offered us his account, as we try to inspire more people to register as potential stem cell donors.
Ministerin @DoroBaer übt Kritik an der Kommunikation einiger nicht explizit genannter PatientInnenvertretungen und rechtfertigt sich für interne Abwägungsprozesse. Beteiligt ist afaik die @dg_mecfs, es gäbe Austausch mit @FatigatioeV , @LongDeutschland und der @MECFSResearch.
Look up « déformation professionnelle ». It helps to explain your experience. Seriously. en.wikipedia.org/wiki/D%C3%A9fo…
Underlying cause of unexplained symptoms captured as "EDS/MCAS/POTS/chronic lyme": Developmental trauma, excessive stress, overstimulation. Based on my experience.
Lying in a dark room with just music is making me so restless I've begun walking around the house making myself breathless and started using the phone again. I'm sure I'll lose the ability to go out. What is this life man. Just give me back my brain
Auch dieses Jahr sammle ich bis zu meinem Geburtstag wieder Spenden für @MECFSResearch . ME/CFS gilt als letzte große unerforschte Krankheit unserer Zeit, das müssen wir ändern! Ich freue mich über jede Unterstützung, egal ob Like, Repost oder Spende. betterplace.org/de/fundraising…
Every day is a game of snakes and ladders*! 🐍 🪜 If only there were as many ladders as snakes, and if only the snakes weren’t so long compared to the ladders. * For those with “mild” ME/CFS, like me. If the metaphor holds for those who are “moderate” or “severe”, the game is
Being an #ME patient is very like living in a world of snakes and ladders. We’ve had some ladders, new NICE guidelines, DecodeME, in the last few years but then the snakes appear, long snakes to the delight of the MSM and, probably the 80% of medics who reject the validity of ME.
Lol I could dx someone within a minute of meeting them. skill issue if you can't. I only apply this to POTS and EDS tho. MCAS is a bit harder but not really, lyme is a pain in the ass and yeah I would never jump the gun on that without probable cause
Over-diagnosis / misdiagnosis / self-diagnosis of EDS, MCAS, POTS, & Lyme is a real problem, and it would appear that there is little appetite by medical professionals to discuss this issue publicly.
I seem to be slowly coming out of the crash. 1 mg Abilify. No idea whether that’s what’s helping, or the 2 mg guanfacine, which I started taking again the day before yesterday. #MECFS
People that helped to bury you under #MECFS who have art degrees and who call #LongCovid a political identity are now informing doctors on “what might work” for your #LongCovid because of online symptom surveys.
From @CortJohnson: “The free @RTHM_Health & @patientled #LongCovid Treatment Guide is one of those publications that makes you wonder, ‘Why hasn’t this been done before?’ A succinct, evidence-based guide drs can quickly turn to learn about LC treatments” healthrising.org/blog/2026/04/0…
As with autism, subtyping ME/CFS seems to be necessary.
In plain language, the paper suggests ME/CFS is not one flat biology. Severity and POTS may line up with different patterns in the fluid around the brain and spinal cord. That could help explain why patients do not all look the same biologically.
Ein Video, das mir das Herz bricht. Ich weiß nicht, was noch passieren muss, damit die Hans-Ottos und Kein-Bock-Maibaums endlich von der Bildfläche verschwinden und Medizin und Politik die Notlage anerkennen. #MEcfs #LongCovid @DoroBaer @ninawarken @Karl_Lauterbach 1/
Die erste Infusion zuhause! Der Port sitzt, der liebe @anreitter ist eingeschult und hat mir heute das erste mal zuhause eine Infusion gesetzt. Danke Schatz! #fightMECFS #MeCfs #POTS
"Hold the Line!" Thank you for using your precious energy to write a post to engage our warrior spirits! #FightMECFS #EndMECFS #FuckTheNIH
"Hold the Line!" Thank you for using your precious energy to write a post to engage our warrior spirits! #FightMECFS #EndMECFS #FuckTheNIH
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