Have there been any long term studies looking at reduction of negative outcomes by model type? Always looking at patient improvement seems such a red herring. We know we don’t have a model to make people better. Until we have a treatment we need a model that helps avoid the really bad things.
"Our CFS_CARE study on symptom-oriented treatment and rehabilitation has now been published in the Am. J. of Medicine.Disappointing: no improvement after 12 months, and after the rehab the Bell Score was even 45% lower, although the specialized rehab at the Bavaria Clinic Kreisch was rated very positively by the patients.Nevertheless important: The ability to undergo rehab must be critically scrutinized in ME/CFS."
Not disappointing. This was expected. And so is the fact that despite not being effective, it still gets good ratings from participants. This is the same reason alternative medicine is so popular, even more so with rich people, who have great experiences at luxurious clinics getting all sorts of useless treatments. But even at low prices, it's very easy to create an inspiring experience that is only effective at extracting money out of people.
This is a common fatal flaw in all those trials. They do everything they can to make the experience welcoming and inspiring, leading to participants who feel welcomed and inspired, but no better, and often worse for it. But they can't manage to separate the experience from the treatment outcome, because they believe they are one and the same. Which is absurd. This industry really needs to grow the hell up.
Not disappointing. This was expected. And so is the fact that despite not being effective, it still gets good ratings from participants. This is the same reason alternative medicine is so popular, even more so with rich people, who have great experiences at luxurious clinics getting all sorts of useless treatments. But even at low prices, it's very easy to create an inspiring experience that is only effective at extracting money out of people.
This is a common fatal flaw in all those trials. They do everything they can to make the experience welcoming and inspiring, leading to participants who feel welcomed and inspired, but no better, and often worse for it. But they can't manage to separate the experience from the treatment outcome, because they believe they are one and the same. Which is absurd. This industry really needs to grow the hell up.
I completely agree. This should be the final nail in the coffin for any sort of rehabilitative program. It's only disappointing to those like Scheibenbogen who wanted to believe they could do this in a good way. That if they believed their patients enough and knew the science enough, that it could be done well. This study proves that, no matter how good your intentions, it is not effective and is often harmful.
Which is further hard evidence for why adequate control of subjective self-report measures is simply non-negotiable. It must be done. Failure to do so renders the outcomes not just ambiguous, but a serious direct and indirect threat to patient welfare.
Evaluation of an Integrated Multidisciplinary Care Model for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Prospective, Open-label, Non-randomized Controlled Intervention Study
Claudia Kedor Peters; Lukas Mödl; Rebekka Rust; Elisa Stein; Pauline Tietz; Laura Kim; Judith Bellmann-Strobl; Mailam Eltity; Friedemann Paul; Christian Veauthier; Wolfram Doehner; Nadja Jauert; Bernd Wolfarth; Thomas Thouet; Johanna Mastmeier-Porst; Anett Reißhauer; Isabelle Hoffmann; Max Liebl; Michael Adamaszek; Bianca Erdmann-Reusch; Cindy Stoklossa; Anja Hagemann; Elena Steinle; Luisa Kegel; Ulrike Grittner; Frank Konietschke; Carmen Scheibenbogen; Kirsten Wittke
BACKGROUND
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a disabling condition with limited treatment options and inadequate healthcare structures worldwide. We assessed the effectiveness of an integrated care model specifically adapted for ME/CFS.
METHODS
In this prospective, open-label, non-randomized controlled intervention study conducted at Charite Fatigue Center we enrolled patients with ME/CFS between 2022 and 2023. Participants in the intervention group received multidisciplinary specialist assessment, comprehensive clinical management, and tailored inpatient rehabilitation, while the control group received a single outpatient consultation and a medical report for their primary physician. Primary outcome was change in physical functioning, measured using the SF-36 physical functioning subscale, at 12 months. Secondary outcomes included disability, symptom severity, quality of life, handgrip strength, and steps per day.
RESULTS
89 intervention and 93 control participants were included in the per-protocol analysis. At 12 months, no statistically significant difference in SF-36 physical functioning scores was observed between groups. Secondary outcomes also showed no substantial between-group differences. Inpatient rehabilitation was completed by all participants who initiated it. Most participants reported that rehabilitation was helpful for learning disease management strategies, and for coping better with daily life. Post-rehabilitation Bell Disability Scale scores decreased in 42/94 (45%) and increased in only 13/94 (14%) patients.
CONCLUSIONS
The integrated multidisciplinary care model was feasible and associated with high retention but did not improve physical functioning or key secondary outcomes at 12 months. Current rehabilitative and management strategies may be insufficient to alter disease trajectory, underscoring the need for more effective, disease-modifying therapeutic interventions.
Web | DOI | PDF | The American Journal of Medicine | Open Access
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