Trudie Chalder to speak at Norwegian Research Seminar

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Well folks, it looks like the PACE gravy train is still rolling forward - even in Norway. Trudie Chalder is a speaker at a research seminar on CFS/ME being held on April 18th 2016.

http://www.euro-me.org/news-Q12016-003.htm

Perhaps it's a brilliant twist to demonstrate that the whole thing was just an exercise to prove how not to research anything.....but I doubt it.
 

A.B.

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So we have a bunch of psychs that will speak about severe CFS. What a sick joke. Trudie Chalder is on record saying that the idea that patients have some sort of underlying disease is silly. I wonder if she still believes that? If so that is a very dangerous situation for patients, as everything the patients do to feel better will be interpreted as inappropriate behavior that must be changed.
 

TiredSam

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A thread title that starts "Trudie Chalder to speak ..." has my heart sinking before I even open it.

Very glad that EMEA is on it and about the tone they're taking.

You'd think that in these times the PACE authors would have to decency to lay low. The fact that she continues to brazenly peddle this abusive filth when she must know that the house of cards is about to come crashing down shows what her priorities are.
 

Cheshire

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A thread title that starts "Trudie Chalder to speak ..." has my heart sinking before I even open it.

Very glad that EMEA is on it and about the tone they're taking.

You'd think that in these times the PACE authors would have to decency to lay low. The fact that she continues to brazenly peddle this abusive filth when she must know that the house of cards is about to come crashing down shows what her priorities are.
I'm not sure she's aware the house is burning. They've always managed to win the game till now. And self delusion can be very powerfull, they live in a world apart, where everybody's convinced ME/CFS is a psychobehavioral disorder.
 

Snowdrop

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A thread title that starts "Trudie Chalder to speak ..." has my heart sinking before I even open it.


You'd think that in these times the PACE authors would have to decency to lay low. The fact that she continues to brazenly peddle this abusive filth when she must know that the house of cards is about to come crashing down shows what her priorities are.
I've begun to fear that the PACE people do not quite see it as a house of folding cards. Their reputations are at stake and it looks like they are going to reinvent PACE and export it everywhere they can so as to entrench themselves more completely.

I can't tell you just how icky this thought makes me feel. I'm starting to wonder if even solid reliable cheap diagnostics for ME would stop this. Since fatigue is the only requisite for their brand of illness they will still have a pool of unfortunate people from which to draw.
 

sarah darwins

I told you I was ill
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I've begun to fear that the PACE people do not quite see it as a house of folding cards. Their reputations are at stake and it looks like they are going to reinvent PACE and export it everywhere they can so as to entrench themselves more completely.
Yes. You wouldn't want to play soccer against these people, would you — they bring their own mobile goalposts.
 

Marky90

Science breeds knowledge, opinion breeds ignorance
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I confronted them about it, and they basically said that "yeah, we might talk about cyclo or rituximab at the next conference, but chalder has a lot experience with the very sick so therefore we invited her".. They obviously have not read the criticism of the PACE-trial. They`re paid to be aware of it, so they have no excuses. I want to bring that up..
 

Asa

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Would Tuller be interested in being in the audience? Could we fundraise a ticket/hotel for him to attend (if interested, able)?

Will ME associations from around the globe send statements condemning Chandler's history of disinformation?

Hosting organization Oslo University Hospital webpage & email address:
[EDIT: link problem/correction; thanks (!) @Snowdrop]
Strange.. not sure what problem with link is (If someone knows, please say :))... google: "Nasjonal kompetansetjeneste for CFS/ME" and for me, it's the first result. http://www.oslo-universitetssykehus.no/omoss_/avdelinger_/cfsme-nasjonal-kompetansetjeneste_
I can't access link by clicking on above, but if I paste the above in a new window, it goes straight there...

And group's email: kompetanseCFSME@ous-hf.no

What about writing to the health ombudsman for Oslo? https://helsenorge.no/pasient-og-brukerombudet/health-and-services-ombudsman

Even if those in power don't listen, it seems important that they get as much info as possible from as many different people as possible, so they can NEVER claim that they didn't know that they actively chose to harm people.


Also, can't think of his name -- but the globally-honored Norwegian pediatrician* who speaks out against CBT/GET. Has he commented on this? Or is he likely to?

*EDIT: Ola Didrik Saugstad http://forums.phoenixrising.me/inde...ly-reprehensible-treatment.12854/#post-217796

https://en.wikipedia.org/wiki/Ola_Didrik_Saugstad

"Since 1991, he has been Professor of Pediatrics at the University of Oslo and Director of the Department of Pediatric Research at Oslo University Hospital, Rikshospitalet"
 
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Chrisb

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but chalder has a lot experience with the very sick so therefore we invited her
I thought the PACE people admitted that they did not have experience of the very sick because they were too ill to participate in the trial. So that's a quarter to a third of cases. Did they not admit that about another third showed no improvement from the trial treatments.
 

Marky90

Science breeds knowledge, opinion breeds ignorance
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I thought the PACE people admitted that they did not have experience of the very sick because they were too ill to participate in the trial. So that's a quarter to a third of cases. Did they not admit that about another third showed no improvement from the trial treatments.
wasnt it like one of 7 who actually were deemed "recovered", and obviously being "recovered" didnt mean anything as you could be "recovered" if you had worse scores on physical function than at entry.. The study dont show any effect at all.
 

Marky90

Science breeds knowledge, opinion breeds ignorance
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That should be changed to "but chalder has a lot of opinions about the very sick so therefore we invited her"

Pity it didn't occur to them to check what Chalder's opinions are, how valid they are, and how much harm they've caused.
Indeed.. my impression after being sick for 2 years, is that a lot of people value having an opinion more than reflecting on what science actually indicates about this condition. And this is especially true when researchers get caught up in their own hypophesises - it then gets more important to prove their right, than to be.. right. And this is why we get angry, we as patients, should not be the ones that present all this valid criticism, it should be the scientists. But i guess human nature just make that difficult.
 

jimells

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I vaguely recall an article about an important person in the Norwegian government who publicly apologized for past abusive treatment of M.E. patients. It might've been the prime minister. Perhaps someone could forward a copy of that letter to the conference organizers.

(I apologize for not doing this myself - I hate it when people say, "Someone should Do Something!")
 

Marky90

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I vaguely recall an article about an important person in the Norwegian government who publicly apologized for past abusive treatment of M.E. patients. It might've been the prime minister. Perhaps someone could forward a copy of that letter to the conference organizers.

(I apologize for not doing this myself - I hate it when people say, "Someone should Do Something!")
That was indeed the prime minister, and I do believe her to have been sincere. The problem is however, that when the government give money to ME, it falls in the wrong hands. Because the hands that recieve, and that is supposed to give it to good research - do not have the sufficent knowledge about ME/CFS, and end up giving it to the psychies..