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Here's an annoying review/CBT cheerleading exercise

Messages
36
We demand high grade evidence for other hypotheses but are happy to recommend CBT for the most severely ill patients and declare it safe despite there being no appropriate research on that patient group whatsoever. Have they ever actually seen someone who is unable to tolerate sound and light, and can't have anyone in their room, let alone tolerate sessions of CBT (which would cause them exquisite pain and cause immediate deterioration)?

http://tidsskriftet.no/article/3434755/en_GB
 

Effi

Senior Member
Messages
1,496
Location
Europe
Chronic fatigue syndrome/myalgic encephalomyelitis is a favourite topic of debate. One frequent assertion is that the condition must be understood as a «biomedical» disease and that «psychosomatic accounts» – including studies that show efficacy of cognitive behavioural therapy – are not credible. Contributions are often emotionally charged and employ specific rhetorical devices in an attempt to weaken others’ professional credibility and right to express an opinion. The debate in many other countries follows a similar pattern and can acquire a tone that deters key professionals from expressing themselves in public
I think this quote needs no further clarification. We all know what's up.
 

soti

Senior Member
Messages
109
Just replace the word "others'" with "patients'" and that describes how the BPS psychoquackers talk about ME/CFS nicely.

Yeah. What I'm realizing in my perhaps quixotic quest to figure out what makes BPSers tick (yeah, I know many people feel this is a waste of time, but this is just the way I am, I can't help trying :) ...what I'm realizing is that the whole discourse is by its very structure a non-starter. This is because each side considers the other side to be not just wrong, but delusional, disrespectful and out to cause damage for personal profit. The feelings are mutual.

Regardless of how this state of affairs came about and which side is right (and you know which side I'm on :), it's not a promising recipe for a substantive conversation, or really anything deserving to be called a conversation at all. It certainly scuttles any chance of a reasoned discussion about trying to actually find the facts of the matter. So the greater scientific community is perhaps our only hope.

That, and getting enough money to decent research.
 
Messages
13,774
An engaged and critical exchange of views is part of the scientific process and should of course be welcomed, but it must follow the established rules. This includes an intention to actually seek out the truth – not simply to triumph over your opponent. It is only the truth that can benefit patients.

LOL.

So much LOL. Sorry maties, but you're about to be triumphed over, and we're not playing by your established rules.


Thread discussing the untranslated version of this here: http://forums.phoenixrising.me/index.php?threads/norwegian-wyller-kronisk-utmattelsessyndrom-me-–-sykdomsmekanismer-diagnostik.41566/
 

Sean

Senior Member
Messages
7,378
A systematic review from 2006 concluded that cognitive behavioural therapy is the treatment with the most evidence to support it (36). This conclusion has subsequently been strengthened through several large-scale studies of adults and adolescents (37 – 40), and the evidence base now includes several thousand patients. The effect size is, however, modest, and there is limited evidence of efficacy in the sickest patients.

[snip]

We believe the evidence base for cognitive behavioural therapy is so solid that all patients with chronic fatigue syndrome/myalgic encephalomyelitis should be offered this treatment. The sickest patients are often bedridden in darkened rooms. This can have serious physical and mental consequences over time (45, 46). We therefore believe that cognitive behavioural therapy must also be attempted in this subgroup, even though the evidence base is weaker. The minimal risk of adverse effects suggests that failing to treat the most severely ill patients is more risky than providing such treatment.
Reference 40 is the original PACE paper (2011), which is now completely redundant and irrelevant after the null result in its 2.5 year follow-up paper.

What a farce.
 
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worldbackwards

Senior Member
Messages
2,051
We therefore believe that cognitive behavioural therapy must also be attempted in this subgroup, even though the evidence base is weaker.
The evidence has isn't weaker, the evidence base is FINE, which is to say it's of no value whatsoever.
The minimal risk of adverse effects suggests that failing to treat the most severely ill patients is more risky than providing such treatment.
I've had GET pushed on me when I was severely ill. The risk isn't minimal at all. If I hadn't set my stall out against certain things early on she'd have finished me off completely and quite cheerfully washed her hands of the consequences. Or just ignored them completely, like she did every time I got worse ("Oh, that shouldn't have happened" - so that's alright then).
This includes an intention to actually seek out the truth – not simply to triumph over your opponent. It is only the truth that can benefit patients.
Given that we've now determined that truth doesn't spring from research or patient experience (God forbid), one wonders where it does come from. Because it looks much like it's source here is power, that they have and we don't. In which case, we'd better keep going until we hear the lamentation of the women!