Trudie Chalder to speak at Norwegian Research Seminar

[mango]

Here's from ME-foreningen's blog (the Norwegian ME Association):
http://me-foreningen.com/meforeningen/?p=8661

(Their website seems to be having some minor technical issues. Just cancel the authentication request pop up. You don't have to log in.)

Google Translate version:
https://translate.google.se/translate?sl=no&tl=en&js=y&prev=_t&hl=en&ie=UTF-8&u=http://me-foreningen.com/meforeningen/?p=8661&edit-text=

 

[mango]

@Marky90, I'm getting goosebumps reading about your protest! Very brave. I'm so sorry you were thrown out

I really hope the seeds of doubt (about Chalder's untruths) that you planted will grow strong and multiply..!

I usually don't encourage aggressive kinds of activism, but... desperate times call for desperate measures and so on... Besides, yours sounds like it was more of the disruptive kind? They can be very effective, when used cleverly.

Also, I really like that you thought things through really well beforehand, and that you tried to do it the "proper" way first, before resorting to alternative approaches.

Good on you for fighting for what you believe in!

 

[Esther12]

Then, I was thrown out.

LOL - this is probably the most active protest I've ever heard of from an ME patient. It would have been nice if there's been any chance for a genuine debate, but we've seen how keen they are to avoid that.

 

[Esther12]

Also - funny how the biopsychosocial lot are increasingly retreating to anecdotes. I've notice that from them too. They must realise how this approach to medicine always seems to lead to quackery? Getting harder and harder to believe that they're well meaning but just incompetent.

 

[Comet]

I was there, and gave handouts of an article i had written. Basically a recap of IOM, Tullers PACE-criticism, and some of my thoughts on how ME is treated by the public health-care.

Chalders` talk was focused on case-reports where CBT supposedly helped, and she talked a lot about how ME-patiens have comorbid depression and anxiety, past traumas etc. This is not actually true, but then again it`s Chalder.
After about 25 minutes i had enough, and took the word. Confronted here on why she didnt mention the PACE-trial which showed that the CBT and GET acttually didnt have any objective improvements in physical function. Told her she should be ashamed of herselves for lying to health workers at a conference. Then, I was thrown out.
I gotta say I found the whole ting really upsetting, and there`s no wonder things haven`t been moving forward, when we have people like this completely neglecting that this is a physical illness.
Chalder doesnt even mention new research, she`s not interested in conflicting opionions. That is, a complete disgrace.
Hopefully some of the attendees read the handouts, and got interested in the problems we face.

This was so incredibly brave! Thank you for what seems to me to be a Herculean effort - from the planning to the confrontation to the unfortunate ejection.

Hope it didn't shake you up too much or have too much of a negative impact.

In my eyes, you are an ME/CFS hero! Standing up to Trudie Chalder - all by yourself - wow!

 

[Jonathan Edwards]

Dr Chalder must be having a busy week if she is representing PACE at the tribunal tomorrow.

 

[duncan]

I used to host events like this. Many speakers used them to promote their resumes.

 

[sarah darwins]

@Marky90 — thank you. That took incredible guts. You're a star.

I bet at least a few people in that room heard you.

 

[A.B.]

PACE is too toxic to be mentioned by its own authors.

 

[Marky90]

LOL - this is probably the most active protest I've ever heard of from an ME patient. It would have been nice if there's been any chance for a genuine debate, but we've seen how keen they are to avoid that.

Thank you Esther, means a lot . I asked the arranger if we could have questions, but it was declined. Usually disrupting talks are bad class, but I find it much more unethical to give the impression to health workers attending the conference; that CBT and GET cures ME-patients. Especially when the raw data - is based on case reports.. I mean, to unbiased, curious, and thoughtful people, it`s obvious that this is completely unethical to recommend to very sick patients. However one handout showed that of about 70-80 people attending yesterday, it was only about 5 doctors. FIVE. The rest was mainly physiotherapists and nurses. This quite clearly shows that the wrong people are given the important responsibility of researching this disease. We need immunologists. But there was not a single one on this conference. Therein lies the wait.

 

[Marky90]

@Marky90, I'm getting goosebumps reading about your protest! Very brave. I'm so sorry you were thrown out

I really hope the seeds of doubt (about Chalder's untruths) that you planted will grow strong and multiply..!

I usually don't encourage aggressive kinds of activism, but... desperate times call for desperate measures and so on... Besides, yours sounds like it was more of the disruptive kind? They can be very effective, when used cleverly.

Also, I really like that you thought things through really well beforehand, and that you tried to do it the "proper" way first, before resorting to alternative approaches.

Good on you for fighting for what you believe in!

Many thanks Mango! I`m glad you liked it. 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.

"The seeds of doubt" - that sounds like a good book title for our fight for research and treatment.

 

[Marky90]

Also - funny how the biopsychosocial lot are increasingly retreating to anecdotes. I've notice that from them too. They must realise how this approach to medicine always seems to lead to quackery? Getting harder and harder to believe that they're well meaning but just incompetent.

Indeed. One would expect so, but it seems that not many people actually inhibit the important feat of well founded critical sense. To many people listening to Chalder, she probably is a charismatic english professor. It biases peoples` critical mind, i expect. The big problem is that a lot of health workers are more critical to our impression of ME, than to the studies conducted on CBT and GET. They don`t read them.

It is an epidemic of abstract drawn conlusions. And we unfortunately don`t have another side of the medical profession that strongly oppose this epidemic.

It will come though. Hopefully the phase 3 rtx-trials show that it works for a subgroup. That really should bury chalder & co. What does b-cells have to do with though processes? I would not be surprised to see them propose that thought processes are related to autommunity..

 

[Marky90]

Dr Chalder must be having a busy week if she is representing PACE at the tribunal tomorrow.

Indeed she has. At the 15th of April she held a talk in Norway about CBT for ME for a department focused on the psychological health of adolescents.

 

[Marky90]

@Marky90 — thank you. That took incredible guts. You're a star.

I bet at least a few people in that room heard you.

I think everbody heard me, 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. I gave handouts to many at the entrance, so I hopefully made a important good first impression for a couple of people then

 

[Esther12]

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.

We are in a difficult situation and the prejudices we face mean that sometimes it's best to be ultra-cautious, but if they're not making room for people to just ask questions, room needs to be made imo.

I think everbody heard me, 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. I gave handouts to many at the entrance, so I hopefully made a important good first impression for a couple of people then

At the very worst you'd have seemed like an unusually well informed loonie.

 

[Marky90]

We are in a difficult situation and the prejudices we face mean that sometimes it's best to be ultra-cautious, but if they're not making room for people to just ask questions, room needs to be made imo.

Well put, that was my reasoning as well..

 

[BurnA]

I think everbody heard me, 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. I gave handouts to many at the entrance, so I hopefully made a important good first impression for a couple of people then

Was it captured on video - you could have been an internet sensation if it was posted on youtube!

Well Done !!!

 

[Marky90]

Was it captured on video - you could have been an internet sensation if it was posted on youtube!

Well Done !!!

Thanks my friend! It was, but I can`t talk about that yet, nor do I know if it will be used.

 

[Jonathan Edwards]

Was it captured on video - you could have been an internet sensation if it was posted on youtube!

Well Done !!!

I bet he is redacted - but let's see!

 

[deleder2k]

@Jonathan Edwards I think the person who filmed it is not affiliated with the conference nor the psychobabble lobby.

I hope it will be released sometime. Perhaps they will make a film about ME activists sometime in the future. The relevance to HIV/AIDS+New York pops up in my mind!