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Jim Faas comments on 'renowned' PACE trial

Forbin

Forbin

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"I've been all over this crazy world... seen a lot of strange
stuff... but if there's one thing I have learned it's that
PACE is for no sickness, Kitten."

v1.bjsxODU4NzU7ajsxNzM3MjsxMjAwOzMwMDA7MjI1MA
 
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Snow Leopard

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Grigor said:
Emile Keuter a Dutch neurologist responded to Faas's blog. Stating that the the ME community is militant and that we in some way choose to not respond to CBT and GET.

I responded. I will put a link to my blog on his. Grr

http://anilvanderzee.com/neurologist-m-e-militant/
Click to expand...

He seems to cherry pick his facts...

Here's the treatments in other some other conditions:

Cognitive behavioural therapy and quality of life in psychologically distressed patients with amyotrophic lateral sclerosis and their caregivers: Results of a prematurely stopped randomized controlled trial
https://www.ncbi.nlm.nih.gov/pubmed/26087303

No Reduction of Severe Fatigue in Patients With Postpolio Syndrome by Exercise Therapy or Cognitive Behavioral Therapy Results of an RCT
http://journals.sagepub.com/doi/abs/10.1177/1545968315600271

etc

Now here is the study he cited:

Both aerobic exercise and cognitive-behavioral therapy reduce chronic fatigue in FSHD an RCT
http://sci-hub.bz/10.1212/WNL.0000000000001008

Note the lack of change in Quadriceps Maximum voluntary isometric contraction, VO2 Max, 6mwd, or improvment in actigraphy for exercise/CBT, yet subjective self report improvements! Sound familiar?
 
Snow Leopard

Snow Leopard

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Grigor said:
Nice, thanks. I hadno idea my friend Gijs was involved as well. Brrrr. But what about the reduction in fat he was talking about???
Click to expand...

Well the study didn't measure BMI and there was no change in muscle strength, so who knows?

The study explicitly shows that subjective self reports in unblinded trials do not correspond with improvements in physical activity, exercise capacity or muscle strength in this group of patients with facioscapulohumeral muscular dystrophy.
 
Grigor

Grigor

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He said this in his blog, google translated

" Now, colleagues under the leadership of Professor Van Engelen in Nijmegen go one step further: In a study of dozens of patients, MRI scanning has shown that patients with FSH treated with CBT show less muscle contamination (muscles becoming fat ) than untreated patients."

I didn't feel like getting into a discussion with him about that so I didn't really check up on it. But he seems to claim there were real objectives findings...
 
Grigor

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Snow Leopard

Snow Leopard

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Grigor said:
He said this in his blog, google translated

" Now, colleagues under the leadership of Professor Van Engelen in Nijmegen go one step further: In a study of dozens of patients, MRI scanning has shown that patients with FSH treated with CBT show less muscle contamination (muscles becoming fat ) than untreated patients."

I didn't feel like getting into a discussion with him about that so I didn't really check up on it. But he seems to claim there were real objectives findings...
Click to expand...

Here it is. For some reason this study didn't cite the original protocol and so I didn't notice it at first.
http://www.neurology.org/content/86/18/1700.short

Note that the data MRI study was for only 54% (31/57) of the patients in the original study (one patient data was discarded due to movement artifacts also). Those who were included in the study seemed to have much higher %adherence than those who did not participate. The gender balance looked a bit different too. They state that A Kruskal-Wallis one-way analysis of variance showed no difference in demographics, so they didn't control for gender statistically. They also state: "In both intervention groups, mean registered physical activity increased compared to the UC"

A key aspect was the UC patients reduced their activity vs baseline, whereas the intervention groups maintained their activity levels at baseline levels. (data in original study). It seems that participants in this MRI study increased their activity levels, hence there seems to be participation bias that may explain the findings of this MRI study.


Also:
The protocol:
https://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-10-56

And of interest:

Cognitive behavioural therapy for reducing fatigue in post-polio syndrome and in facioscapulohumeral dystrophy: A comparison.
Koopman FS, Brehm MA, Beelen A, Voet N, Bleijenberg G, Geurts A, Nollet F.
https://www.ncbi.nlm.nih.gov/pubmed/28657640
CONCLUSION:
Fatigue-related cognitions in severely fatigued patients with post-polio syndrome are not clearly different from that in facioscapulohumeral dystrophy. Thus, the lack of efficacy of cognitive behavioural therapy in post-polio syndrome cannot be attributed to unique cognitive characteristics of this population.
Click to expand...

Eg. they have no clue what they are actually measuring.
 
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Grigor

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I could imagine that GET could be beneficial, I don't know about the disease. But in general exercise is good?
 
Snow Leopard

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Grigor said:
I could imagine that GET could be beneficial, I don't know about the disease. But in general exercise is good?
Click to expand...

It seems to me that some patients were able to exercise and some were not. Those that were able to exercise were more likely to participate in the MRI study, hence the small but significant alterations in muscle vs fat for the subgroup that participated.

It means the findings cannot be generalised to all facioscapulohumeral muscular dystrophy patients, but only those capable of increasing their exercise levels.

(also, I've edited the post above)
 
Grigor

Grigor

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Yeah cause in his blog he refers to CBT being the therapy that caused these effects with no mention of GET, but that seems weird. In the study they talk about GET. Seems more likely that that caused the improvement indeed.
 
Snow Leopard

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Grigor said:
Yeah cause in his blog he refers to CBT being the therapy that caused these effects with no mention of GET, but that seems weird. In the study they talk about GET. Seems more likely that that caused the improvement indeed.
Click to expand...

CBT for this group explicitly incoporated an activity programme:

CBT comprised 6 possible modules based on the known fatigue-perpetuating factors3 and previous research.8 These modules were directed at insufficient coping with the disease; dysfunctional cognitions regarding fatigue, activity, pain, or other symptoms; fatigue catastrophizing; dysregulation of sleep or activity; poor social support; and negative social interactions (appendix e-2). To account for interindividual differences in these factors, the intervention was adapted to the specific needs of each participant, including an individually tailored structured
activity program. Each session was 50 minutes in duration and was conducted at the nearest participating center by a cognitive-behavioral therapist. The total number of sessions for each participant was based on the number of modules to be addressed, which were identified by the therapist by performing an interview and specific tests. Acceptable compliance with the CBT program was defined as completion of a minimum of 3 sessions.
Click to expand...


Also:

A limitation of this study is the potentially low generalizability as only 74 of the 377 invited patients took part.
Click to expand...
I don't know why it says 74 patients, when 94 patients were assessed, and then 37 excluded, No severe fatigue (25), wheelchair bound (8), illiteracy (2), other reasons (2). This left 57, not 74 patients for randomisation.

Also, finally this was a crossover study and 20/24 (4 discontinued) patients were randomised for CBT/AET, so no long term followups comparisons to a control group are possible.


Also, on adherence by the participants:

Eleven AET participants (39%), six CBT participants (24%) did not achieve the level of acceptable adherence. (Acceptable adherence with the AET program was defined as completion of a minimum of 40 training sessions. Acceptable adherence with the CBT program was defined as completion of a minimum of 3 sessions.)

All of this limits the generalisability of the findings as I mentioned above.
 
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Grigor

Grigor

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Thanks for explaining and reading. So he's bullshitting by only mentioning CBT. and 74 of 377 isn't much. I could add something like.

"Although the study showed some interesting results the participants also received an activity program so were the improvements only through CBT. and thus a body and mind thing?"
 
Snow Leopard

Snow Leopard

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Grigor said:
Thanks for explaining and reading. So he's bullshitting by only mentioning CBT. and 74 of 377 isn't much. I could add something like.

"Although the study showed some interesting results the participants also received an activity program so were the improvements only through CBT. and thus a body and mind thing?"
Click to expand...

Yes, there were similar results for the exercise group compared to the CBT group. And the MRI study only had 31 patients, out of the originally invited 377. (and only 57 actually participated in the CBT/Exercise/"control" crossover study)
 
S

Solstice

Senior Member
Messages
641
Grigor said:
They were hyperlinked at the top of the page,

Google translated
https://translate.google.nl/translate?sl=nl&tl=en&js=y&prev=_t&hl=en&ie=UTF-8&u=https://www.medischcontact.nl/opinie/blogs-columns/blog/cognitieve-gedragstherapie.htm#&edit-text=

Orginal versionhttps: https://www.medischcontact.nl/opinie/blogs-columns/blog/cognitieve-gedragstherapie.htm#
Click to expand...

Thank you, read some fragments of it, can't put myself to read more cause it's so terrible. The one response holds nothing good aswell. Basically everyone in science is an idiot except them.
 
S

Solstice

Senior Member
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641
I appreciate what you guys are trying to do with regards to the other diseases mentioned btw. But imo they are a distraction. What matters is that no objective improvements where ever shown for CBT and GET with regards to ME/CFS and that there are overwhelming reports of harms.
 
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