Thread by @TilmanAndris, I remember @richardvallee referring to @MEcfs someplace as the catch-22 disease: whatever [...]

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?

• 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

• 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

• Accepting you have a chronic illness and adjusting life accordingly —> “inadequate behaviour / hindering own recovery and rehabilitation”
• 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

https://twitter.com/remediespodcast/status/1245730534392770561?s=21

https://twitter.com/lana_winters/status/1245733214771183617?s=21 https://twitter.com/lana_winters/status/1245733214771183617

https://twitter.com/lana_winters/status/1245733214771183617?s=21

https://twitter.com/themupsmuppet/status/1245727658077491200?s=21 https://twitter.com/themupsmuppet/status/1245727658077491200

https://twitter.com/themupsmuppet/status/1245727658077491200?s=21

https://twitter.com/e_stopped/status/1245713536774549508?s=21 https://twitter.com/e_stopped/status/1245713536774549508

https://twitter.com/e_stopped/status/1245713536774549508?s=21

• 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

https://twitter.com/northstr5/status/1245746429865361410?s=21 https://twitter.com/northstr5/status/1245746429865361410

https://twitter.com/northstr5/status/1245746429865361410?s=21

https://twitter.com/fatigo_mecfs/status/1245746757386096640?s=21 https://twitter.com/Fatigo_MECFS/status/1245746757386096640

https://twitter.com/fatigo_mecfs/status/1245746757386096640?s=21

https://twitter.com/exceedhergrasp1/status/1245748266664202240?s=21 https://twitter.com/exceedhergrasp1/status/1245748266664202240

https://twitter.com/exceedhergrasp1/status/1245748266664202240?s=21

https://twitter.com/exceedhergrasp1/status/1245749371427160065?s=21 https://twitter.com/exceedhergrasp1/status/1245749371427160065

https://twitter.com/exceedhergrasp1/status/1245749371427160065?s=21

• 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

https://twitter.com/oshunsprite/status/1245749779315019777?s=21

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