2/n English #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome rehab clinics:
At 1 year after initial assessment
I have been able to return to work or increase my hours: 18.0%
I have stopped working or reduced my hours: 34.8%
#GradedExerciseTherapy #CBT #MEcfs #CFS #MyalgicE
3/n English #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome rehab clinics:
At 2- to 5-year follow-up
I have been able to return to work or increase my hours: 23.7%
I have stopped working or reduced my hours: 34.9%
#GradedExerciseTherapy #CBT #MEcfs #CFS #MyalgicE
4/n #MECFS rehab clinics
At 1 year after initial assessment
Do you think that you are still suffering from CFS/ME? No: 2.8% Uncertain: 10%
Note “no" & "uncertain" would also include those who now consider CFS/ME to be a misdiagnosis; it doesn't mean they are fully healthy
#CFS
5/n English #MECFS rehab clinics
Do you think that you’re still suffering from CFS/ME?
@ 2 yrs No 5.0% Uncertain 8.8%
@ 3 yrs No 2.4% Uncertain 7.2%
Note “no" & "uncertain" would also include those who now consider CFS/ME to be a misdiagnosis;it doesn't mean they’re fully healthy
6/n English #MECFS rehab clinics
Do u think that you’re still suffering from CFS/ME?
@ 4 yrs No 6.6% Uncertain 11.3%
@ 5 yrs No 8.2% Uncertain 9.2%
Note “no" & "uncertain" would also include those who now consider CFS/ME to be a misdiagnosis;it doesn't mean they’re fully healthy
7/n You’d expect some people with #MEcfs to say they were recovered or in remission with time *without* therapy.
Also note recovery rates were low in #PACEtrial Dr Miller refers to with no statistically significant increase for either CBT or GET
🧵
"Almost no ME/CFS patients return to work: "The help we have provided to patients through the welfare and healthcare systems has had little rehabilitative effect," says a researcher."
“They see [in the research data] that very few of the patients were well enough to work again, even nine years after diagnosis. These are disappointing results, but unfortunately not particularly surprising.”
#MEcfs #PwME
3/
“Many patient stories show that those who try to adapt to the labor market often experience relapse. Working life is largely not adapted for people with low and varying work capacity, says Trude Schei, assistant secretary general of the ME Association.”
2/ “A study involving over 3,000 participants – both patients & clinicians – found that these misdiagnoses (sometimes termed “in your head” by patients) were often associated with long term impacts on patients’ physical health & wellbeing and damaged trust in healthcare services”
3/
“Patients who reported that their autoimmune disease was misdiagnosed as psychosomatic or a mental health condition were more likely to experience higher levels of depression and anxiety, and lower mental wellbeing. (contd)”
“Worse, when we don’t ignore them, we blame them, telling them they are all free to rise from their beds & wheelchairs, to walk away from the city. Doctors tell them they can free themselves of the disease by changing their belief systems. (contd)”
#MyalgicEncephalomyelitis
3/
“(Contd) Make the effort, they say, and you will regain your health and previous lives.”
“What makes PEM [post-exertional malaise] particularly insidious is that symptoms often do not worsen until 24 to 72 hours after exercise. As a result, patients who feel fine immediately after exercise can unknowingly push themselves beyond their limits”
#MEcfs #PwME #CFS
3/ “The well-meaning advice to 'move a bit more', which patients regularly receive, can be counterproductive in their case. Of course, this does not mean people with ME/CFS should remain completely still. Movement remains important, but within the limits indicated by their body”