Read on Twitter
1/ Thread
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome #MECFS
Is it really that bad?
Trigger warnings: The studies below paint a very bleak picture
#MyalgicE #SickNotWeak #pwME #MyalgicEncephalomyelitis #ChronicIllness #MedEd #MedTwitter #SickNotWeak
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome #MECFS
Is it really that bad?
Trigger warnings: The studies below paint a very bleak picture
#MyalgicE #SickNotWeak #pwME #MyalgicEncephalomyelitis #ChronicIllness #MedEd #MedTwitter #SickNotWeak
2/ Full recovery from #MECFS is rare
The median recovery rate from multiple published studies is 3-7%
(just 1 paper linked below)
#MyalgicE #SickNotWeak #pwME #MyalgicEncephalomyelitis #ChronicIllness #MedEd #MedTwitter https://academic.oup.com/occmed/article/55/1/20/1392403#.XjdI4StujO8.twitter
The median recovery rate from multiple published studies is 3-7%
(just 1 paper linked below)
#MyalgicE #SickNotWeak #pwME #MyalgicEncephalomyelitis #ChronicIllness #MedEd #MedTwitter https://academic.oup.com/occmed/article/55/1/20/1392403#.XjdI4StujO8.twitter
3/ ~25% of #MECFS patients are housebound or bedbound.....
....sometimes for decades!
That means no work, no vacations, no social life, lost time, lost goals, lost relationships..... https://journals.sagepub.com/doi/abs/10.1177/1742395316644770?rfr_dat=cr_pub%3Dpubmed&url_ver=Z39.88-2003&rfr_id=ori%3Arid%3Acrossref.org&journalCode=chia#articleShareContainer
....sometimes for decades!
That means no work, no vacations, no social life, lost time, lost goals, lost relationships..... https://journals.sagepub.com/doi/abs/10.1177/1742395316644770?rfr_dat=cr_pub%3Dpubmed&url_ver=Z39.88-2003&rfr_id=ori%3Arid%3Acrossref.org&journalCode=chia#articleShareContainer
4/ Many ME/CFS patients are too sick to work
#MECFS is so disabling that only ~13% of patients are able to maintain full-time employment (FTE) compared to 70% FTE prior to disease
#SickNotWeak #pwME #MyalgicEncephalomyelitis #ChronicIllness https://link.springer.com/article/10.1007/s41669-018-0071-6
#MECFS is so disabling that only ~13% of patients are able to maintain full-time employment (FTE) compared to 70% FTE prior to disease
#SickNotWeak #pwME #MyalgicEncephalomyelitis #ChronicIllness https://link.springer.com/article/10.1007/s41669-018-0071-6
5/ The quality of life for #MECFS patients is measurably worse than patients with other serious diseases/illnesses including cancer (all), stroke, lung diseases such as COPD, renal failure and heart attack
@PLOSONE #ChronicIllness #MedEd #MedTwitter https://dx.plos.org/10.1371/journal.pone.0132421
@PLOSONE #ChronicIllness #MedEd #MedTwitter https://dx.plos.org/10.1371/journal.pone.0132421
6/ The #suicide rate for #MECFS patients is nearly 7x higher than the general population
Not surprisingly, the level of disability, loss of quality of life, loss of employment, the social disconnection can be devastating
@TheLancet #MedEd #MedTwitter https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(15)01223-4/fulltext#.XjdMqb8sQls.twitter
Not surprisingly, the level of disability, loss of quality of life, loss of employment, the social disconnection can be devastating
@TheLancet #MedEd #MedTwitter https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(15)01223-4/fulltext#.XjdMqb8sQls.twitter
7/ Having #MECFS is like "being ruled by an unfamiliar, inexplicable body"
"Being ill for a long period of time often means living a
restricted life with limited participation in social settings and less shared activities with other people"
#MyalgicE https://www.tandfonline.com/doi/abs/10.1080/11038128.2018.1455895?journalCode=iocc20#.XjqOyOa17EE.twitter
"Being ill for a long period of time often means living a
restricted life with limited participation in social settings and less shared activities with other people"
#MyalgicE https://www.tandfonline.com/doi/abs/10.1080/11038128.2018.1455895?journalCode=iocc20#.XjqOyOa17EE.twitter
8/ ME/CFS patients often face stigma and disbelief
As many as 31% doctors do not believe that #MECFS is a distinct syndrome
#MyalgicE #SickNotWeak #pwME #MyalgicEncephalomyelitis #ChronicIllness #MedEd #MedTwitter #SickNotWeak
https://www.ncbi.nlm.nih.gov/pubmed/10721550
As many as 31% doctors do not believe that #MECFS is a distinct syndrome
#MyalgicE #SickNotWeak #pwME #MyalgicEncephalomyelitis #ChronicIllness #MedEd #MedTwitter #SickNotWeak
https://www.ncbi.nlm.nih.gov/pubmed/10721550
9/ #MECFS patients face enormous difficulties just getting a diagnosis
Over 80% of patients remain undiagnosed or misdiagnosed more than 2 years after disease onset
#MyalgicE #SickNotWeak #pwME #ChronicIllness #MedEd #MedTwitter #SickNotWeak https://ja.ma/384ESAw
Over 80% of patients remain undiagnosed or misdiagnosed more than 2 years after disease onset
#MyalgicE #SickNotWeak #pwME #ChronicIllness #MedEd #MedTwitter #SickNotWeak https://ja.ma/384ESAw
10/ #MECFS patients are disabled but most cannot get disability benefits
despite the long-term disabling nature of ME/CFS that leaves many patients unemployed and housebound, most dont qualify for disability benefits in many countries
#ChronicIllness #MedEd #MedTwitter
despite the long-term disabling nature of ME/CFS that leaves many patients unemployed and housebound, most dont qualify for disability benefits in many countries
#ChronicIllness #MedEd #MedTwitter
11/ #MECFS patients are sick.....
...very sick.
They need care, respect, acknowledgement and support
#MyalgicE #SickNotWeak #pwME #MyalgicEncephalomyelitis #ChronicIllness #MedEd #MedTwitter #SickNotWeak
...very sick.
They need care, respect, acknowledgement and support
#MyalgicE #SickNotWeak #pwME #MyalgicEncephalomyelitis #ChronicIllness #MedEd #MedTwitter #SickNotWeak
