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Neuroskeptic: Open Data and CFS/ME – A PACE Odyssey Part 1

trishrhymes

trishrhymes

Senior Member
Messages
2,158
I don't understand how he can write a piece on harms other than to say it's clear the researchers did not properly measure harms.
Since there is no way of knowing from the data whether people sensibly protected themselves from exercise induced PEM by either not doing the exercises or by cutting back other activities to compensate, and since as many as half may have had other fatigue conditions, not ME with PEM, I can't see how PACE shows anything about the harms or otherwise of GET.
But then maybe that's what he intends to say????
:bang-head:
 
Glycon

Glycon

World's Most Dangerous Hand Puppet
Messages
299
Location
ON, Canada
Jonathan Edwards said:
I genuinely suspect he misses the point. It is a bit like saying Charles Ives's Fourth Symphony should not be called bad because there are enough B flats in it. Science occurs in the messy context of real people with strange social conventions. A Vulcan analysis may come unstuck.
Click to expand...

I had the exact same impression. (Yes, Ives's Fourth and everything! ;))

Unless he is setting up for a huge punchline in Part II, this conclusion was exceptionally weak-sause.
 
Glycon

Glycon

World's Most Dangerous Hand Puppet
Messages
299
Location
ON, Canada
worldbackwards said:
He has a unique charm.
Click to expand...

This is your brain on Henrik Vogt:

b50b5d5019b4546282c2f6ef32e51246.jpg
 
Kalliope

Kalliope

Senior Member
Messages
367
Location
Norway
Woke up to this new addition by dr. Vogt in the comment section. It is kind of fascinating that some people are able to draw conclusions like this.

"... In practice, it is impossible to do research on therapy like CBT or lightning process or anything similar today because it is so heavily undermined by patient advocacy groups who work systematically to personally damage researchers, hamper the projects and downtalk the treatments. Treatment like this is not like a pill, it needs to be believed in, the patient needs to have some motivation and has to put some faith in it. It is likely hard to make a treatment like this work if patients are marinated with the message that it is dangerous 24/7 (a point one should also consider when interpreting the PACE study where many participants were exposed to such messages).

Those who do spread such messages, attack researchers etc. should also be aware that they also risk damaging people´s lives, a prospect they do not seem to take seriously. There seems to be something more important to them than the health and lives of others in fact. The minute patient´s who very once their fellows in suffering recover in a way like this, they are branded as not having "real ME" (just a fake fatigue) and are chastised for not having recovered in a way that supported the main cause of proving the problem is beyond human control." http://disq.us/p/1chp8uk
 
S

Solstice

Senior Member
Messages
641
Kalliope said:
Woke up to this new addition by dr. Vogt in the comment section. It is kind of fascinating that some people are able to draw conclusions like this.

"... In practice, it is impossible to do research on therapy like CBT or lightning process or anything similar today because it is so heavily undermined by patient advocacy groups who work systematically to personally damage researchers, hamper the projects and downtalk the treatments. Treatment like this is not like a pill, it needs to be believed in, the patient needs to have some motivation and has to put some faith in it. It is likely hard to make a treatment like this work if patients are marinated with the message that it is dangerous 24/7 (a point one should also consider when interpreting the PACE study where many participants were exposed to such messages).

Those who do spread such messages, attack researchers etc. should also be aware that they also risk damaging people´s lives, a prospect they do not seem to take seriously. There seems to be something more important to them than the health and lives of others in fact. The minute patient´s who very once their fellows in suffering recover in a way like this, they are branded as not having "real ME" (just a fake fatigue) and are chastised for not having recovered in a way that supported the main cause of proving the problem is beyond human control." http://disq.us/p/1chp8uk
Click to expand...

Anything can happen if you just believe. Why, I've watched Peter Pan with my niece this week and now I'm a resident of neverneverland, all through the power of beliebing. It is awesome here, barring some run-ins with this hookhanded fella. Tinkerbell's fairy dust also cured me of my M.E. You guys should join me, only thing you have to do is just believe!!
 
wdb

wdb

Senior Member
Messages
1,392
Location
London
dr. Vogt said:
Treatment like this is not like a pill, it needs to be believed in, the patient needs to have some motivation and has to put some faith in it. It is likely hard to make a treatment like this work if patients are marinated with the message that it is dangerous
Click to expand...

wikipedia said:
The placebo effect is related to the perceptions and expectations of the patient; if the substance is viewed as helpful, it can heal, but, if it is viewed as harmful, it can cause negative effects
Click to expand...
 
Kalliope

Kalliope

Senior Member
Messages
367
Location
Norway
Kalliope said:
Dr. Vogt: Treatment like this is not like a pill, it needs to be believed in, the patient needs to have some motivation and has to put some faith in it.
Click to expand...
An LP-coach said something similar as an explanation to why a lecture in LP must cost 17 000 NOK (2100 USD 1600 GBP). You see, a high price increases the patient's motivation to get better.

So earning millions as a coach is due only to utter kindness and consideration for the patients. :whistle:
 
Y

Yogi

Senior Member
Messages
1,132
I have read some of neuroskeptics work before.

Not impressed at this blog. I see Julie rehmeyer is trying her best to explain the key issues to him.

Who is neuroskeptic? Anybody know?

I read somewhere he works in neuroscience in the UK.

Most of the scientists who supported David Tuller open letter were from the USA and not on the NHS academia payroll.

I think it is a bit difficult to be too skeptical when you possibly work in the NHS and british academia and given the PACE authors are part of the medical and scientific establishment. It would be a concern not to bite the hand that feeds you to hard given one would be going up against the PACE establishment who are active at a high level.

Let's wait for part 2!
 
S

soti

Senior Member
Messages
109
Treatment like this is not like a pill, it needs to be believed in, the patient needs to have some motivation and has to put some faith in it.
Click to expand...

Everything they do that is so inexplicable to us follows from this belief. Their protestations that they are trying to help, the mid-PACE newsletter, their insistence that the ordinary rules of clinical trials don't apply to what they are doing. Nice to see it condensed into a single sentence.
 
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