Read on Twitter
I remember @richardvallee referring to @MEcfs someplace as the catch-22 disease: whatever you do or say, you are f****d.
• Some activity —> others assume capacity you don’t have
• Not that activity —> you are activity-avoidant
#pwME, do you have more examples?
• Some activity —> others assume capacity you don’t have
• Not that activity —> you are activity-avoidant
#pwME, do you have more examples?
• Seeking out further examinations after #MEcfs diagnosis —> perpetuating patient role, lack of acceptance of diagnosis
• Not seeking out examinations —> doctors: no objective findings, no disease, no impairments, no disability / non-doctors: why have you given up?
#pwME
• Not seeking out examinations —> doctors: no objective findings, no disease, no impairments, no disability / non-doctors: why have you given up?
#pwME
• Saying you are never tired or fatigued but feeling flu-like —> “patient in denial about diagnosis” or “claims his fatigue feels like the flu - catastrophising”
• Using ‘fatigue’ after all —> “it’s normal to feel fatigued when you do so little” “do you still do sports?” #MEcfs
• Using ‘fatigue’ after all —> “it’s normal to feel fatigued when you do so little” “do you still do sports?” #MEcfs
• Accepting you have a chronic illness and adjusting life accordingly —> “inadequate behaviour / hindering own recovery and rehabilitation”
• Not accepting chronicity —> “in denial”
#pwME #MEcfs
• Not accepting chronicity —> “in denial”
#pwME #MEcfs
• Sharing some info about #MEcfs with your doctor —> problem patient / catastrophizing / ME? Must be thinking he has acute encephalitis.
• Sharing no info —> your doctor knows NOTHING about your illness
#pwME
https://twitter.com/remediespodcast/status/1245730534392770561?s=21 https://twitter.com/RemediesPodcast/status/1245730534392770561
• Sharing no info —> your doctor knows NOTHING about your illness
#pwME
https://twitter.com/remediespodcast/status/1245730534392770561?s=21 https://twitter.com/RemediesPodcast/status/1245730534392770561
https://twitter.com/lana_winters/status/1245733214771183617?s=21 https://twitter.com/lana_winters/status/1245733214771183617
https://twitter.com/themupsmuppet/status/1245727658077491200?s=21 https://twitter.com/themupsmuppet/status/1245727658077491200
https://twitter.com/e_stopped/status/1245713536774549508?s=21 https://twitter.com/e_stopped/status/1245713536774549508
• Heart rate is 170 BPM during slow walking right after disease onset —> “your smart watch must be defective” “we don’t do diagnostics by smart watch”
• 170 BPM during slow walking some months later —> “see how much you’ve damaged yourself through inactivity” #MEcfs #pwME
• 170 BPM during slow walking some months later —> “see how much you’ve damaged yourself through inactivity” #MEcfs #pwME
https://twitter.com/northstr5/status/1245746429865361410?s=21 https://twitter.com/northstr5/status/1245746429865361410
https://twitter.com/fatigo_mecfs/status/1245746757386096640?s=21 https://twitter.com/Fatigo_MECFS/status/1245746757386096640
https://twitter.com/exceedhergrasp1/status/1245748266664202240?s=21 https://twitter.com/exceedhergrasp1/status/1245748266664202240
https://twitter.com/exceedhergrasp1/status/1245749371427160065?s=21 https://twitter.com/exceedhergrasp1/status/1245749371427160065
• GPs know little about #MEcfs, because they don’t ask their patients questions
• GPs don’t ask their patients about their #MEcfs, because they feel they know too little about it in the firts place...
#pwME
https://twitter.com/oshunsprite/status/1245749779315019777?s=21 https://twitter.com/oshunsprite/status/1245749779315019777
• GPs don’t ask their patients about their #MEcfs, because they feel they know too little about it in the firts place...
#pwME
https://twitter.com/oshunsprite/status/1245749779315019777?s=21 https://twitter.com/oshunsprite/status/1245749779315019777
Someone pointed out my total lack of understanding of the structure of a catch-22. So here, downthread, apologies to @richardvallee for totally screwing up his beautiful MEcfs-catch-22 concept. But I really ‘enjoy’ all the ME-dilemmas, paradoxes and catch-22s here...
https://twitter.com/planetlobattery/status/1245796948554035200?s=21 https://twitter.com/planetlobattery/status/1245796948554035200
Haha, great meta-catch-22 from @e_stopped
#MEcfs #pwME #MyalgicE #MillionsMissing
https://twitter.com/e_stopped/status/1245748868849045511?s=21 https://twitter.com/e_stopped/status/1245748868849045511
#MEcfs #pwME #MyalgicE #MillionsMissing
https://twitter.com/e_stopped/status/1245748868849045511?s=21 https://twitter.com/e_stopped/status/1245748868849045511
• Bother with your appearance —> 
• Don’t bother with your appearance —>
#pwME #MEcfs #MyalgicE #MillionsMissing
https://twitter.com/mariamelkanoa/status/1245804114237444097?s=21 https://twitter.com/MariaMelKanoa/status/1245804114237444097
• Don’t bother with your appearance —>
#pwME #MEcfs #MyalgicE #MillionsMissing
https://twitter.com/mariamelkanoa/status/1245804114237444097?s=21 https://twitter.com/MariaMelKanoa/status/1245804114237444097
• When you have #MEcfs, consulting a doctor may lead to fear of doctors (because of dismissal of your illness)
• Fear of doctors may then lead to further dismissal during subsequent consultations (“just anxiety”).
#MEcfs #MyalgicE #pwME #MillionsMissing
https://twitter.com/8homeslice8/status/1245783974468780036?s=21 https://twitter.com/8homeslice8/status/1245783974468780036
• Fear of doctors may then lead to further dismissal during subsequent consultations (“just anxiety”).
#MEcfs #MyalgicE #pwME #MillionsMissing
https://twitter.com/8homeslice8/status/1245783974468780036?s=21 https://twitter.com/8homeslice8/status/1245783974468780036
