Cochrane Review: 'Exercise therapy for chronic fatigue syndrome' 2017, Larun et al. - Recent developments, 2018-19

Kalliope said:
Yes there is a sceptic community, and ME patients have tried to alert them numerous times, but they don't seem interested. I believe it's unfathomable for them that the leader for the National Competence Service of ME/CFS, researchers as Wyller et al, politicians, institutions as The Norwegian Institute of Public Health etc are so enthusiastic of Lightning Process if there's not anything to it.
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…. and they like to think of themselves as sceptics?
 
Jonathan Edwards said:
One of the points I made in my testimony to NICE is that in this area there seems to be no dividing line between the apparently respectable and the obviously bogus. Nobody is interested in thinking about that in this 'liaison psychiatry' community.
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Maybe they think like this:

Medically unexplained symptoms are a somatoform disorder but we don't say that openly.
Hope, motivation and positive expectations treat the sick mind.
A bogus treatment is an acceptable way to deliver hope, motivation and positive expectations (placebo effect).
It doesn't matter how weird the bogus treatment is as long as it helps.
Spin, outcome switching, etc are all good for patients because a positive message enhances expectations.
People don't believe in our ideas so we have to keep them secret and make up some semi-credible explanations for what we're actually doing.

This would actually explain a lot.
 
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Michiel Tack said:
I don't quite understand this. I would suspect that it's obvious that the Lightning Process is bogus and that anyone involved discredits him/herself.

Is there a skeptic community (not involved with ME/CFS) you can speak to about this? You could say that patients are being misled with this bogus, secretive and expensive treatment and that the science director at the Norwegian Institute of Public Health is contributing to this by coauthoring articles about it or Flottorp by retweeting recovery stories of LP. Is that an option?
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I may be cynical, but I expect that most "skeptics" would see nothing wrong with using LP for ME because most don't really think there's anything wrong with us and so anything goes.

The mistake sits at the very core of the issue: that everything done to us is by definition harmless, no matter what, no matter by whom. It just follows from then that X, whatever X is, will always be fine as long as it can influence some to shake off the delusion of believing there is something wrong with us.

When you believe that rights do not apply to some, any question about whether a specific right is being violated is meaningless since it is accepted that no rights apply.

This is the true harm behind the psychosocial model: it gives full license for anyone to abuse us since it is accepted that we are OK to abuse.
 
strategist said:
Maybe they think like this:

Medically unexplained symptoms are a somatoform disorder but we don't say that openly.
Hope, motivation and positive expectations treat the sick mind.
A bogus treatment is an acceptable way to deliver hope, motivation and positive expectations (placebo effect).
It doesn't matter how weird the bogus treatment is as long as it helps.
Spin, outcome switching, etc are all good for patients because a positive message enhances expectations.
People don't believe in our ideas so we have to keep them secret and make up some semi-credible model to do what we're really doing.

This would actually explain a lot.
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That is my interpretation as well. Everything is fair game and testimony of harm can be safely dismissed with prejudice since it is assumed that no harm is possible. This is the basis of "rousing reassurance": you can BS all you want as long as you BS with confidence, and don't hold back since you can do no wrong here.
 
strategist said:
Maybe they think like this:

Medically unexplained symptoms are a somatoform disorder but we don't say that openly.
Hope, motivation and positive expectations treat the sick mind.
A bogus treatment is an acceptable way to deliver hope, motivation and positive expectations (placebo effect).
It doesn't matter how weird the bogus treatment is as long as it helps.
Spin, outcome switching, etc are all good for patients because a positive message enhances expectations.
People don't believe in our ideas so we have to keep them secret and make up some semi-credible explanations for what we're actually doing.

This would actually explain a lot.
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Yes, it is important to consider their mindset.

Psychiatrists consider the mind most important, that is to say the most important thing is to have the patient to say they are better (at least somewhat). It does not matter if the patient is still ill and that their thoughts saying they are better are transiently biased and does not reflect the reality of their level of functioning. The belief that patients are ill is the problem.

It is not merely that they ignore bias of unblinded studies, they actually believe that such bias of perception is the goal.

The second most important thing, and a corollary of the first is to avoid saying that there is nothing that can be done to help patients. These are the type of people who like to talk about "the powerful placebo effect" and so they perceive the biggest poison to be the lack of hope (and related emotions) that would result if patients are told, hey, most people stay severely ill and there is nothing we can do beyond the generic health advice that applies to everyone in our society (appropriate sleep, diet, hygiene, activity, avoid risky behaviour and staying mentally healthy).
 
So which would patients prefer:
a false hope that will certainly be dashed (and the patient blamed), or
an honest appraisal of the situation?

There can still be “hope”, even whilst no treatment exists and prognosis is poor, but that requires a medical profession that does not fob the patient off with platitudes, and a dedication to honest research.
 
rvallee said:
I may be cynical, but I expect that most "skeptics" would see nothing wrong with using LP for ME because most don't really think there's anything wrong with us and so anything goes.
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Yes, this is how I see it. Sceptics are already sceptical of us. The fact that the LP "works" is just more evidence to them that we're a bunch of woo-woo hysterical middle-aged women, so no need to look any further or bother debunking anything.

The sceptic community has been worse than useless on M.E. Being convinced of one's own rationality is a hell of a drug.
 
Sean said:
Wessely has explicitly stated he considers psychiatry to be the core of medicine, or the most important branch of medicine, or something to that effect.
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Yes, he's stated it to be 'at the heart of medicine' in various sources, such as here https://www.kingshealthpartners.org/latest/855-new-royal-society-of-medicine-president and here https://www.newscientist.com/article/mg22329850-400-we-need-shrinks-in-hospital-emergency-rooms/ .

(ETA: I would have expected science to be at heart of medicine, but never mind, silly me!)
 
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chrisb said:
Something's afoot. But I know not what.
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‘I have the sole-lution toe to everything.’ He’d say, archly.

To comment a little further I Don’t know Wessley, obviously, but to saying that psychiatry is at the centre of medicine makes me think well he would say that wouldn’t he. Just Coincidentally he’s at the heart of (uk) psychiatry.
 
feeb said:
Yes, this is how I see it. Sceptics are already sceptical of us. The fact that the LP "works" is just more evidence to them that we're a bunch of woo-woo hysterical middle-aged women, so no need to look any further or bother debunking anything.

The sceptic community has been worse than useless on M.E. Being convinced of one's own rationality is a hell of a drug.
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The sceptic community online groups are extremely unlikely to have a true sceptic at the head of the group. There's more likely to be a grand master that draws in repeaters and haters.

They are just online w****ers who alternate between online w****ing and online "scepticism", if you get my play on words.

They most likely live in a bedroom or the basement of their parents house and use a desktop they built themselves from an old Atari game system and a bunch of modified hard drives.

Basement W***ers!
 
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