Discussion in 'PsychoSocial ME/CFS Research' started by Dolphin, Apr 15, 2020.
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According to the CBT model, decreased physical activity would produce a worsening of CFS and PEM. That's why the aim of the therapy is ultimately to increase physical activity.
What is happening here?
Also note that steps per day is probably a more accurate measure of health status than self-reported symptoms. So if there is some doubt as to what is actually happening, interpretation should lean towards these patients being less healthy and the reported improvement possibly being due to bias.
The difference in drop out rates are rather concerning.
Very interesting. So it does the opposite of what it's supposed to.
A new term BPSM
What a strange mix why not throw in juggling for good measure
They are muddling "CF post EBV" with "CFS" and using PEM interchangeably. Either way, it's bizarre.
Rookie mistake including steps/day and ruining the results, the pro's know better than that.
I wonder how this approach has impacted some of the families:
The treatment programme assumes active participation from the patient between the sessions, and the therapists tried to communicate the necessity of individual effort.
Parents/guardians are the most essential caregivers for the patient, and in a positive way can motivate the patient and provide guidance through the principles and specific techniques which were introduced in the treatment programme. At the same time, parents/guardians may also strengthen a negative illness behaviour and
disease attribution, which in turn may have a negative impact on the prognosis. Therefore, it was of great importance to involve the parents/guardians in the treatment programme.
They've used Henrik Vogt's "patient organisation" Recovery Norge as patient involvement. How on earth can that be justified??
Most CBT treatment protocols for CF and CFS encompass an element of increased physical activity over time,5 6 and graded exercise therapy (GET) in itself is shown to have beneficial effects in CFS.36 37 Our mental training programme did not contain this element, which may explain why physical activity to our surprise actually tended to decline in the intervention group during the treatment period. Interestingly, we observed a concurrent tendency of improvement of postexertional malaise in the intervention group. This is in line with the own experiences of patients with CFS, often reporting an initial worsening of symptoms during physical exercise which in turn might contribute to the strong controversy over studies that recommend GET in patients with CFS.38 39 Thus, the therapeutic approach applied in the present study might be more acceptable from a patient perspective, which further adds to its feasibility.
I haven't read the whole paper, but if their steps per day were averaging over 7000 at the start, they must have been very mild cases of whatever they had. And clearly the intervention didn't work, so why bother to write about getting parents involved.
This is just silly. Their own graph shows that when activity reduced, so did symptoms.
How they can infer from this that GET (something they expressly claim wasn't a part of the treatment) is effective seems... well, I won't say what I think, because it's offensive.
La la la
La la la
oh look I’m better everyone - not
The government actually funded this madness. Let that sink in.
Okay lets have a look at this magical musical treatment
They say, "Evidence suggests a beneficial effect of cognitive–behavioural therapy (CBT) in adults...", and then reference PACE , "... and adolescents", referencing FITNET . The dedicated incompetence and arrogance is just on another level with these guys. The errors in PACE are NON NEGOTIABLE, you could literally be deemed recovered even though u were worse off at study end compared to study study start. In FITNET there was no effect at long term follow-up, and actometer results (that showed no improvement) were excluded from the study paper without mention!
Furthermore they go on "Generally, harmful effects of CBT have never been consistently reported" - thats because they drop out of the study and u dont ask why! Of course u wont receive any reported worsenings if theyre not in the study anymore.
They continue: "Preliminary evidence suggests that a multidisciplinary approach combining CBT with other elements might improve effectiveness as compared with CBT alone in patients suffering from CFS.10–13 ", and cite (1) a study that says mindfulness has no effect, (2) the bogus study on children by Crawley et.al, and (3) a study by stubhaug on mindfulness on people with general fatigue. This is just nonsense
About the withdrawals they say "A total of seven individuals were lost to follow-up during the first 3 months of the study. Six of these individuals were allocated to the intervention group, and they all left the study prior to or immediately after therapy start-up, again reporting concern over school absence as the main reason." - Yeah im gonna go ahead and call bs on that. The intervention was only once a week for starters, and if these participants were able to go to school it tells us a lot about what type of cohort this was (general fatigue probably), as most ME-patients are unable to go to shool due to PEM.
Some random parenting blaming is also put in for good measure: "Parents/guardians are the most essential caregivers for the patient, and in a positive way can motivate the patient and provide guidance through the principles and specific techniques which were introduced in the treatment programme. At the same time, parents/guardians may also strengthen a negative illness behaviour and disease attribution, which in turn may have a negative impact on the prognosis. Therefore, it was of great importance to involve the parents/guardians in the treatment programme" - I can see this causing some pretty severe bias problems in the questionnaires
They conclude: "the increased recovery rate after 15 months in the intervention group might indicate that mental training for postinfectious CF is clinically useful."... Wyller... The activity of ur participants literally was proven to be lower at study end compared to study start. Please have some self-dignity. What this study shows is that some researchers will do whatever it takes to support their own theory, and that subjective questionnaires cannot be used alone to consider if ME-patients are recovered.
You cant just write your own song you've got to sing from their hymn sheet. It contains the magical notes and words.
That would be fraud.
Wyller genuinely seems to believe that the investigation and report from the British Health Research Authority cleared the PACE trial from everything it's been criticised for.
They have all been told multiple times that the study was only ETHICALLY approved, not officially excused for not being a work of fiction. But this does not fit their narrative
Well that was a waste of scarce public funds. Might as well pay those people to play Animal crossing all day, it would actually lead to a better world as we wouldn't have to suffer this level of pseudoscientific incompetence.
How is PEM evaluated?
Absolutely zero reliability, accuracy or relevance. Most of the time I would barely be able to even attempt to give a score to that, a total guesstimate. And even at that the only correlation appears that as steps reduce, so does PEM. But the rating has no validity anyway.
Seriously at this point the blame lies mostly on whoever approves, funds and publishes this. This is mismanagement of the process that allocates research funding and frankly, like most ME-BPS experiments, should be made to be reimbursed. Still, as usual, despite showing nothing of value, it recommends going forward with a full trial. Because of course it does.
I mean, this is just egregiously incompetent and misleading:
No clear differences despite a trend? So a non-differentiable trend? What? Are you day-drinking or just a professional BSer?
Do leave your professional licenses at the door, they are clearly wasted on you.
Also, from a reviewer:
Peer "review"? Is this a twisted joke?
Separate names with a comma.