@abrokenbattery.bsky.socialMy #MECFS Scandal explainer has just hit half a million views on YouTube.
I remember worrying that 27 minutes was too long and nobody would watch it. I never expected it to get so many.
Thank you to everyone who shared it!
Here’s the trailer 👇
@halcionandon.bsky.socialI’d really like a chance at life.
I need a stable, safe environment. Without it, I will continue to decline & die.
#MutualAid #ChronicIllness #MyalgicEncephalomyelitis #MECFS #MCAS #POTS #EhlersDanlos #LongCovid #Endometriosis #ChronicPain #Dysautonomia
@chronicloaf.bsky.social#PREY, a Predator franchise movie, just started in the #ChronicLoaf stream
#Criptober #horror #spookyseason #Halloween #disability #mecfs #longcovid #insomnia #ForTinu #Deaf #autism #chronicillness
@marlaamara.bsky.socialWieviel BEWEISE braucht es eigentlich noch, bis die #PVA endlich wirksam in die Schranken gewiesen wird.
Wieviele #MeCfs Betroffene müssen noch in die Zustandsverschlechterung und den Tod getrieben werden.
on.orf.at/video/143416...
@schumannkorinna.bsky.social
@kristinwrites.bsky.socialMy parents are here. Haven’t seen them in ten months. I have done entirely too much talking today. #MECFS
@ahimsa-pdx.bsky.socialAbsolutely true! Wearing a mask (respirator) and taking other COVID precautions seems like an obvious thing to do!
Who wouldn't want to prevent getting a lifelong chronic illness that can be disabling?
@bigpolarbear.bsky.social今日は過日の青空をお届けします😃
筋痛性脳脊髄炎が広く周知され、治療法が見つかりますように。
#ブルーフォトチャレンジ
#筋痛性脳脊髄炎
#笑顔の花びら集めたい
#5月12日
#mecfs
#bluephotochallenge
@chronicloaf.bsky.social#Marama is playing next in the #ChronicLoaf stream
#Criptober #horror #NEISvoid #mecfs #DisCo #ForTinu #spoonie #ChronicPain #Halloween #spookyseason
@kristinwrites.bsky.social
@nlizaki.bsky.socialCorrection! If you want to join Team Nevra and help make graphics, videos, do admin, & more, please message @ myspiritflora on Instagram & one of the team will get back to you asap.
@alemmatthees.bsky.socialThere are *thousands* of patients reporting harms from rehabilitation for #MECFS in the UK. People argue these reports are not reflective of the entire patient population, but supporters of GET do not seem particularly concerned about all the harm done and tend to downplay it as nonserious DOMS.
@alemmatthees.bsky.social(3/3) They overlook that objective outcome measures in clinical trials of GET for #MECFS do not show significant and/or meaningful improvement. If some patients walk a few tens of meters extra on the occasional six minute walk, that is a far cry from 30 minutes of moderate exercise 5 times per week.
@alemmatthees.bsky.social(2/3) There is no evidence that CBT or GET for #MECFS safely increases total activity levels. Some people wrongly assume increases occur because it slightly moved the needle on self-reported measures of fatigue and physical function in non-blinded, non-placebo controlled clinical trials. But ...
![Response from Chalder et al. to the negative CBT trial by Lloyd et al. (1993):
"At the heart of CBT is a behavioral approach to the impairment of activity that is part of the definition of CFS. [...] the primary aim of treatment is to restore activity and function. [...] CBT involves the achievement of mutually agreed activity targets. [...] If the patients were compliant with the program, then by definition the number of sedentary hours must have decreased. This did not happen. [...] We suspect that the patients were actually noncompliant with treatment. As avoidance of activity is at the heart of the perpetuation of disability, it is not surprising that treatment gains were limited."
Chalder T, Deale A, Wessely S, Marks I. Cognitive behavior therapy for chronic fatigue syndrome. Am J Med. 1995 Apr;98(4):419-20; author reply 421-2. doi: 10.1016/s0002-9343(99)80332-5. PMID: 7709961.](https://cdn.bsky.app/img/feed_fullsize/plain/did:plc:z2al2flt26qu3kzv3pmzqt54/bafkreid4aknkacbr3vtb7f2emkl7r46xw27jgdms6bug2t6ruyegf3azg4@jpeg)
@tomkindlon.bsky.socialLiving a rock ‘n’ roll life: doing laps of the local green air (300 metres) to check battery length of my electric wheelchair! 😜
Didn’t get a great angle for this photo when I was taking one of many breaks lying on a bench.
#MEcfs #PwME #MyalgicEncephalomyelitis #SpoonieLife #ChronicLife
@chronicloaf.bsky.social#QueerForFearTheHistoryofQueerHorror docuseries is playing in the #ChronicLoaf stream
#Criptober #lgbtqiaplusrepresentation #DisCo #DisabilityCommunity #mecfs #spoonie #ChronicPain #longcovid
@simsamzi.eurosky.socialEigentlich müsste die Prinzessin noch baden- hat sich im Garten mit irgendwas einparfümiert 🤯🤢 aber da müssen heute Einmalwaschlappen und eigenes Brettchen reichen
Geduscht, obiges und eine Waschmaschine angemacht, die ich mich jetzt noch prügeln werde aufzuhängen. 200% Tag
#Krankheitsgewinn #MECFS
@corbden.defcon.social.ap.brid.gyRE: https://hear-me.social/@debby/117377815268419424
This is good news.
But I'm also thinking... they could have just asked us.
@verhac.bsky.social
@mdmsel.bsky.socialMan hat keine Vorstellung wie es bei einem schwerkranken #MECFS ist. Bettwäsche wechseln? Desinfizieren? Was ist mit den Tabletten, die einen halbwegs am Leben halten? Krankenhaus?
Alles nicht möglich/mit weiterer Verschlechterung des Zustandes verbunden&keine Vorstellung wie schlimm es schon ist.