@pzneedsrest

Music🎶 Film🎞️ Investigative Journalism🧐 Hot Chips🍟 Happiest by the sea 🌊 I used to do things, now living small as a #pwME #MillionsMissing 👻

 Whadjuk Noongar Boodjar
Joined November 2013
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This is probably a really bad activity for #pwME but I totally get sucked in by engagement bait like this. Anyway I had to cheat and look at the hidden replies to find the 😺
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@HUUK72670323Oct 21
1분 안에 고양이를 못찾으면 ADHD 고위험군
Readers added context they thought people might want to know
이 게시물의 '1분 내 고양이 미발견 = ADHD 고위험군' 주장은 과학적 근거가 없습니다. ADHD 진단은 단일 시각 테스트가 아닌 전문가의 종합 임상 평가 과정입니다. cdc.gov/adhd/diagnosis/ mayoclinic.org/diseases-condi… leadstories.com/hoax-alert/202…
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Why do so many of my mutuals follow this ME minimiser? Liz is tired everyone! Tired of her disease being buried, while simultaneously trying to bury another one.
ApocaLiz@Lizzardo77Oct 21
No mention of prevention. Anywhere. I'm tired. Tired of my disease being buried in exactly the same way that patients with numerous illnesses have been buried in mecfs diagnoses. I understand people's optimism, I know patients need answers, but this is just more dirt in our grave
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This behaviour is not rational or logical. Getting angry because people are being diagnosed with an illness when you think they should be diagnosed with something else. Listen to yourselves. This is ridiculous.
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This bears repeating since I've seen more misinfo today from some in the LC "community". Diagnosis of #MECFS is based on positive signs and symptoms and is therefore not a "diagnosis of exclusion". mayoclinicproceedings.org/ar…

Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic neurologic disease often preceded by infection. There has been increased interest in ME/CFS recently because of its signific...

mayoclinicproceedings.org
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PEM (or PENE according to the International Consensus Criteria) is the hallmark of #MyalgicEncephalomyelitis Definition and information on the abnormalities identified that contribute to the "state of PEM" are in this thread: xitter.cf/pzneedsrest/status/203…
PZ@pzneedsrestMar 25
Replying to @BatemanHorne
@BatemanHorne on PEM "...it is an altered physiological state and pathognomonic finding unique to #MECFS..." "The exacerbation of symptoms is accompanied by a profound loss of stamina, reduced functional capacity, and by augmented perturbations of #MECFS pathophysiology...
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The confected outrage and pettiness whenever there is media attention on #MyalgicEncephalomyelitis in the "covid era" from some in the LC "community" is pathetic. If it was reported the person was diagnosed with POTS, cardiac disease, diabetes, or basically anything else...
PZ@pzneedsrestOct 17
Replying to @kadamssl
Oh it's an outrage!
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...they would not react this way. They just can't stand any mention of ME. EBV is implicated here too so in this case, as in so many cases, it's not clear what the trigger is. The trigger could also be a combination of things - a perfect storm.
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Beth Dobbin has had access to some of the best available medical care in the UK - which, when it comes to ME doesn't say much - but the point is I'm sure she's spent many hours talking to people and learning about ME. These people are telling her she's wrong, they know better.
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One of my least favourite things on here is non-disabled people talking about disability and disabled people. You all don't know shit.
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The transformation of this site into a forum for nazis is almost 100% complete.
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From The Australian: "600,000 patients risk losing care over $220k grant". A bit on the current state of things for #pwME in Australia. #MyalgicEncephalomyelitis #MEcfs #GreatestMEdicalScandal
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Link to article here: emerge.org.au/news/the-austr…
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Anyway you can write multiple theses on this shit - tied into pandemic denial, tribalism, distrust in institutions, economic anxiety, rejection of political correctness/"wokeness", decline of expertise, cognitive dissonance, echo chambers and so on and so on.
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I don't think I'm saying anything that most sick or disabled people already don't know... sometimes things just need to be said.
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