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
“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”
On Edina: “It left her bedbound, unable to even shower or use the bathroom, and so sensitive to any kind of sensory stimulation that reading a book or watching the television would be harmful.”
#SevereME #MEcfs #PwME
3/
“Speaking to the BBC prior to her death [from Euthanasia], Ms Slayter-Engelsman compared the experience of ME to being trapped in a spider's web, saying: "Every time you try to get out, the web just gets tighter and tighter around you".