Trudie Chalder to speak at Norwegian Research Seminar

BurnA

BurnA

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Marky90 said:
I expect to be, and I don`t mind. However I think putting a face to frustration could bide well in a good documentary. The producer is a great person, and will know what should be included.
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Sounds great that there is something in the making.
Documentaries are the way forward - its a lot easier for people to understand the story when the can see it.

Imagine cutting from an image of a sick patient barely able to walk, to Trudie Chalder giving a speech saying that exercise is good for patients.
 
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JES

JES

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Marky90 said:
I think everbody heard me:woot:, the question is how many started to asks questions, compared to how many who just sat back with the impression that I was a loonie:nervous:. I gave handouts to many at the entrance, so I hopefully made a important good first impression for a couple of people then
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Surprising and a bit disappointing they didn't allow normal Q&A session afterwards, you had no choice then but to interrupt her. On the conference sessions I have been on there are always a couple of questions, if not from the audience then from the chair, but then again those were proper conference seminars.
 
Asa

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"Speak truth to power!" Well done, Marky90, and thank you! No Q/A is ridiculous.

The speakers could have made their talks/slides available to *all people* by posting them online pre-seminar (In Norwegian and English?). *All people* then could have posted comments and asked questions--including those too ill to attend, and then when the speakers actually spoke they could answer at least some of the posted questions. How can you have an alleged educational anything with no questions allowed??
 
Marky90

Marky90

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Asa said:
"Speak truth to power!" Well done, Marky90, and thank you! No Q/A is ridiculous.

The speakers could have made their talks/slides available to *all people* by posting them online pre-seminar (In Norwegian and English?). *All people* then could have posted comments and asked questions--including those too ill to attend, and then when the speakers actually spoke they could answer at least some of the posted questions. How can you have an alleged educational anything with no questions allowed??
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Chalder has refused to make the slides available, the charming lady.
 
deleder2k

deleder2k

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I don't see any reason that slides should be held public when she is speaking on a conference paid by Norwegian taxpayers - unless we're talking about unpublished data.


Kati: Yes. I am quick! My sleep pattern is pretty f** up at the moment, so I am almost sitting here with F5 and refreshing, hehe. I live in Norway, but my body is on Eastern Time. That is 6 hours. Guess I'll watch CNN's election coverage.
 
Marky90

Marky90

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By the way, i actually went up to her before the conference.. It was kinda funny, i just said "what in the world are you doing here? You know this is a conference about the very sick ME-patients?". She was a bit bamboozled and sturred "yeah". I said: "Well you cant propose CBT or GET, cause your own PACE-study proved it didnt work". She responded "I*m not gonna talk about GET".. I actually think she`s aware of her fraud, but she`s more concerned about her own legacy, than patients getting the right treatment.
 
Kati

Kati

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:cool:
Marky90 said:
By the way, i actually went up to her before the conference.. It was kinda funny, i just said "what in the world are you doing here? You know this is a conference about the very sick ME-patients?". She was a bit bamboozled and sturred "yeah". I said: "Well you cant propose CBT or GET, cause your own PACE-study proved it didnt work". She responded "I*m not gonna talk about GET".. I actually think she`s aware of her fraud, but she`s more concerned about her own legacy, than patients getting the right treatment.
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@Marky90 every country need people like you :cool::cool::cool::cool:
I think we have been way too polite so far. 30 years later... :ill:
 
T

taniaaust1

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BurnA said:
Sounds like a good idea although the letter on its own is probably sufficient.

How about placing a copy of the letter on every chair in the room ? Would that be possible ?
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I once gate crashed a large medical conference which highlighted new discoveries in the medical fields and left good printouts of ME info (a fact sheet explaining things) which included good scienctific references amongst their other medical leaflets that the conference participants were taking. I wonder how many drs I educated a bit that day. (what I did with putting in ME/CFS info didn't get discovered till end of the conference after drs been taking info all day).

then I layed outside it and protested on how the medical conferences here cover everything else except ME/CFS, the "invisible illness" representing how we get ignored. I'd made up signs which I learned against the walls, while I was laying on ground protesting (laying cause I was so ill and couldn't sit all day).

This did bring the conference organisators attention and they meet with me before I agreed to end my protest. (I was too sick though to follow up things further after the intial meeting in which they said they would consider our illness in future for their biannual scientific medical conference and would communicate again with me if I got back in touch re our illness). they said I was the first protestor they've ever had at one of their conferences. What I did had certainly had a positive outcome.
 
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V

Valentijn

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Marky90 said:
I was quite concerned that a lot of patients would find interrupting a talk to be unacceptable. It warms my heart that the notion seems to be that it rather is acceptable, given the cirmumstances.
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A seminar is just a specific type of conference. The point is still to "confer", or have discussions and exchange opinions. It sounds like the organization hosting the event badly abused the concept to create something where one side would be heard with no discussion or disagreement allowed.

It was obnoxious of them to do such a thing, and interrupting to share your view was the most appropriate response to an entirely inappropriate situation. If the PACE investigators and other quacks want to play scientist, they need to accept and respond to scientific and rational scrutiny ... they can't continue to hide behind formalized protocols of exaggerated politeness instead.

My guess would be that Chalder would only agree to speak if no questions were involved.
 
TiredSam

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Valentijn said:
A seminar is just a specific type of conference. The point is still to "confer", or have discussions and exchange opinions. It sounds like the organization hosting the event badly abused the concept to create something where one side would be heard with no discussion or disagreement allowed.

It was obnoxious of them to do such a thing, and interrupting to share your view was the most appropriate response to an entirely inappropriate situation. If the PACE investigators and other quacks want to play scientist, they need to accept and respond to scientific and rational scrutiny ... they can't continue to hide behind formalized protocols of exaggerated politeness instead.

My guess would be that Chalder would only agree to speak if no questions were involved.
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Reminds me of the Lightning Process, where participants are expected to be absolutely obedient and not question or doubt anything. That's the kind of audience these people insist on, anything less is considered an affront.
 
JES

JES

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The figure on page 33 alone demonstrates everything that is wrong with this approach. Instead of desperately trying to prove the efficiency of their dubious methods on patients, they should go back and investigate whether their original fatigue hypothesis makes any sense to begin with.
 
Snowdrop

Snowdrop

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Nicely layed out. Very prettily done. Clear, straightforward and easy to follow. Well mostly.

One slide asks: Does it work in real life? I'm not sure. There was no Yes involved.

I particularly loved :heart: the Engagement section. I'm simplifying here but it boils down to optimism and hope (they did use those words).

I can't help but wonder what massive tectonic shift in world view would happen if one of them ever had the misfortune to become ill with ME.

Next up--rainbows really do shoot out of unicorns butts--you just have to believe. Brought to you from the halls of the very latest in science--NOT.
 
Esther12

Esther12

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She really is a quack.

There's too much annoying stuff in those slides for it to be worth pulling out. Would have been good to have a proper Q&A there.

Slide 8: Sounds like a new telephone study coming:

There appears to be some evidence that telephone treatment is as effective as face to face
(Burgess et al submitted)
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Slide 14... I can't believe that she's still trying to pull this. Same slide was criticised in this 2011 thread:

Esther12 said:
I've now edited this first post to include some of the points made by others too.

http://www.kcl.ac.uk/content/1/c6/01/47/68/EBVRCT.pdf

edit: seems offline there, try here: https://docs.google.com/viewer?a=v&...7jV2DO&sig=AHIEtbQH6DoJAJZL7zayQ5eotg0DJoc_Kw

A randomised controlled trial of a psycho-educational
intervention to aid recovery in infectious mononucleosis

Bridget Candy, Trudie Chalder, Anthony J Cleare,
Simon Wessely, Matthew Hotopf*

I've seen this study often mentioned as evidence that it's how patients respond to their illness, rather than the infection itself which is most important in determining levels of long-term disability.

It's a bit of a rubbish design, with only the intervention group getting therapist time, but the control group getting a leaflet. I've seen these results being promoted as if they were really dramatic, but if you look at the differences, much of it could be explained by those whose fatigue improved in the 'intervention group' being more willing to fill in questionnaires at six months than the 'control group'. At 12 months, when both groups have more similar rates of return, the level of fatigue reported are pretty similar:



Considering this was not well controlled, and at 12 months there was no statistical difference between the levels of fatigue reported between the two groups, I think it would be fair to laugh at anyone trying to present this study as really compelling evidence for anything.

They actually mentioned this problem in the paper:



I know Peter White strangely forgot to mention those problems when he discussed this study from around fourteen minutes in here: http://www.scivee.tv/node/6895



White also cites this study in his presentation for the Gibson Parliamentary Group that was looking in to the research around ME/CFS, and reported concerns about the links between the insurance industry and researchers (White being a prominent example of this). I wonder if their report would have been harsher had they not been misled about the value of psychosocial interventions:

viewer


www.erythos.com/gibsonenquiry/Docs/White.ppt

Seems a bit misleading to claim "Educational intervention, based on graded return to activity, halved the incidence of prolonged fatigue" considering that there was no statistical difference between the two groups at twelve months.

Chalder also cites this paper in this presentation here: http://www.mental-health-forum.co.uk/assets/files/11.20 Trudie Chalder FINAL 169FORMAT.pdf

index.php


Strangely her graph does not include the data from 12 months in. Purple did a more complete graph:

index.php


More useful, but rather less impressive.

That last Chalder presentation was from 2012. That this trial with 36 people in the therapy group which found no statistical difference between the group receiving therapist time and the group who just got a leaflet, and it is still being used by them to sell their expertise a decade after it was completed is indicative of the quality of evidence they have to support their claims.

It is even possible for the control group to be viewed as a nocebo:



If they theorise that fear related to viral infection is a significant factor in CFS, they could have expected such a leaflet to have a negative affect (depending upon what exactly the leaflet said).

So many of their results just look like homeopathy to me - act nice to patients and get slightly better questionnaire results because i) those who are feeling better are more likely to feel grateful and so complete their forms and ii) people tend to try to be positive about those who they think have tried to help them.

And people wonder why patients don't trust White and Chalder to present the data from the PACE trial in a fair and reasonable manner.

PS: The more stuff I read from around the time I got ill, the more pissed I get at the poor evidence base for the advice I was given. If they were that ignorant as to what I should be doing, they should have just been honest about it and left me to do whatever I thought was best instead of incompetently managing the psychosocial setting of my illness and promoting 'positive' cognitions - bloody bastards.

PPS: In post #7 I post a link to a Chalder presentation where she has a graph for the data from this study, but has removed the data for after 6 months! It's so annoying to think that people are just going to trust her without looking things up.
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Slide 26:

4. Provide an explanation for symptoms
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Based on what?

Slide 31: To be fair, good this is highlghted. A shame that the benefits are so exaggerated, preventing informed decisions about whether it's worth the sacrifices,

Highlight sacrifices which family will have to make to participate in treatment
i.e. attending consultations, discussing difficult issues openly, carrying out homework, preparing for setbacks, potentially learning to live with ongoing residual difficulties,
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