Solche Anfragen bekomme ich oft. 1/

"Can you see it now?" This is a very striking illustration of how #mecfs #neurocovid #longcovid patients feel every second of their lives. Reward comes of being gaslighted by the others, including their own families. Watch the video in fullscreen. Video credit: Trugrace Artistry

Post exertional malaise (PEM) is the hallmark symptom of #MECFS It’s not fatigue following activity. It is a dramatic deterioration and worsening of symptoms. Short video explainer - triggers, symptoms, and management. Repost for the last day of #MEAwarenessMonth

This illness is hard enough, but it’s no wonder this woman took her own life. Look at the way her husband described her even in death: “…Emily ended up essentially bedbound and became ‘extremely neurotic’ about her health following her diagnosis.” He added: ‘She became hyper aware of her symptoms. There were always new ones and it became difficult to keep track. She was obsessive about steps to the detriment of all else. She decided that she couldn't even walk to the toilet.” Extremely neurotic Hyper-aware of her symptoms *She decided* she couldn’t even walk to the toilet. Placed on antidepressants… GTFOH She decided that she couldn’t even walk to the toilet. 😭😭💔💔💔 That line slays my soul. Sure, she did. She just sat down one day and said: “You know what, I’ve decided I can no longer walk to the toilet.” And I blame the advocates, the clinicians, and the researchers. Because if you hadn’t spent so much time trying to convince the world that this was “nothing new” to line your own CVs and greedy pockets, this woman’s husband wouldn’t be calling her extremely neurotic and acting like she made a conscious decision to become sick. This is why we fight. thesun.ie/news/17652897/mum-…

Du hast ME und bist super positiv und resilient, dann heißt es, so schlimm kann es ja nicht sein, vielleicht haben Sie ja auch ein paar Vorteile von der Krankheit, die Sie ausnutzen wollen. Du leidest psychisch unter der Situation, dann heißt es, sehen Sie, es liegt ja doch an der Psyche. Du wehrst dich gegen Therapien, die dich bettlägerig machen können, dann bist du aggressiv. Du klärst Behandler über den wissenschaftlichen Sachstand auf, dann hast du eine negativ-kritische Grundhaltung. Du stirbst als Folge der Fehlbehandlungen, dann heißt es, das hat ja seit 1969 niemand wissen können, es ist alles ganz neu. So funktioniert Stigma. So funktioniert aber auch Manipulation. #MECFS ist eins der wenigen Felder, in denen Psychopathen, Narzissten und Sadisten Menschen noch in den Tod foltern können, ohne die geringsten Konsequenzen befürchten zu müssen.

Inzwischen 65 Mitzeichner! Die gemeinsame Stellungnahme aus Versorgung und Wissenschaft findet weiter Unterstützung. Herzlichen Dank an alle, die dieses fachliche Signal mittragen! Weitere Mitzeichner sind willkommen. #MECFS #PEM #Patientensicherheit psychotherapie-mecfs.de/stel…

The most toxic players in the establishment onslaught against the sick and disabled are trying to convince the wider public that THEY are the ones under attack. ♿ My new article explores this dangerous trend - or social contagion if you will... (link in first comment/voiceover available 👇) They shout from behind their megaphones to millions of gullible ears, that the sick are waging a war on free speech and "journalistic enquiry", whilst literally blocking us. 📢 But we're more intelligent than they give us credit for, and we can see exactly what they are doing. DARVO is the weapon of choice right now, and we have to call it out. /1 #coviddenialism #blockedbyvine #longcovid #disabilityrights #sickness #chronicillness

CBT feels like taking a car to a garage because there's a weird noise coming from the engine, and the mechanic - without opening the bonnet - shows you how to turn the volume on the radio up loud enough to drown out the noise. Doesn't fix the problem. Car might still blow up.

According to Charles Shepherd, Honorary Medical Advisor of the ME Association, inflammation in the dorsal root ganglia could result in some of the sensory symptoms that occur in ME/CFS—pain, loss of sensation, abnormal sensations (paraesthesiae).

#pwME I just saw something interesting in an ME group that intrigues me. If you have #MECFS , do you have crinkly fingertips like you’re in the bath or wrinkles and lines across them? I do and I’m wondering how common it is. It’s hypothesised to be a result of oxidative stress.

Here is something that talks about hundreds of epigenetic effects of omicron in the nervous system.

Dear sir, TY 4 the opportunity 2 work in the Turning Life Lemons into Lemonade Dept. I am now a master mechanic of the lemonade machine. TY 4 teaching me these skills. I tire of drinking lemonade. May I have a transfer to another Dept? #NeuroSjogrens #Dysautonomia #PAIS #ME

I’m sorry Poppy but Dr Susanne O’Sullivan is talking nonsense about a medical specialty she has ZERO expertise in. It is both outrageous, ableist and misogynistic to assume conditions like POTS (which affect women more than men) are psychosomatic. This is not supported by 1/

I wrote about The Telegraph’s ableist piece deriding so-called “Sickfluencers”. I examine the state's interest in discrediting the growing wave of newly-disabled young people as the state continues to deny the long term harms of repeated COVID infections. thegauntlet.news/p/covid-not…

THEM: I was just thinking of stopping by ME: Stop thinking that

@Support, bitte entsperren Sie den Account @mecfsawareness. Der Account wird von einer echten Person betrieben – keinem Bot. Der Account leistet wichtige Aufklärungsarbeit zu ME/CFS. Bitte prüfen Sie die Sperrung noch einmal. Vielen Dank! 🙏

I’m gonna leave it at this. pmc.ncbi.nlm.nih.gov/article… bmj.com/content/331/7523/989 link.springer.com/article/10… pmc.ncbi.nlm.nih.gov/article… pmc.ncbi.nlm.nih.gov/article… pubmed.ncbi.nlm.nih.gov/2884… pubmed.ncbi.nlm.nih.gov/3123… pmc.ncbi.nlm.nih.gov/article… pubmed.ncbi.nlm.nih.gov/3671… pmc.ncbi.nlm.nih.gov/article…