Trudie Chalder to speak at Norwegian Research Seminar

[AndyPandy]

Just catching up with this thread.

@Marky90 you are a legend.

 

[Cheshire]

Slide 5:

The belief that exercise should be avoided

I like to hear them speak about "beliefs", when their "theory" ignores all biomedical works that show an abnormal response to exercice, the 2 days CEPT, Julia Newton's work on cultivated cells and so much more.

They know a lot about "beliefs", they're experts. Intense daily training.

 

[Marky90]

Just catching up with this thread.

@Marky90 you are a legend.

The hospital has decided to press charges against me, which i find hillarious. They do f*** all, and when somebody does - they must be deported and punished for their sins. I am not paying a dime, so I guess I will se them in court!

 

[worldbackwards]

The hospital has decided to press charges against me, which i find hillarious. They do F*** all, and when somebody does - they must be deported and punished for their sins. I am not paying a dime, so I guess I will se them in court!

Bizarre. What's the charge?

 

[Marky90]

Bizarre. What's the charge?

Yea. Not sure what the english law term is, but I expect the charge to be "disturbance of law and order".

 

[Chrisb]

Have they never heard of adverse publicity? One would think they would want to shut down the story rather than potentially broadcast it to a wider audience.

 

[Marky90]

Have they never heard of adverse publicity? One would think they would want to shut down the story rather than potentially broadcast it to a wider audience.

Exactly. I will argue that their charge violates my freedom of speech, but especially due to the circumstances: No Q & A, no treatment for patients, and false information in Chalders presentation. I even asked specifically for a Q & A before her talk.

 

[AndyPandy]

Unbelievable! They would have been better off doing nothing. They have now handed you an opportunity to make media aware, rally supporters outside court and air your views in court, which I assume will be open to the public and reporters.

 

[A.B.]

Exactly. I will argue that their charge violates my freedom of speech, but especially due to the circumstances: No Q & A, no treatment for patients, and false information in Chalders presentation. I even asked specifically for a Q & A before her talk.

Make sure to bring relevant critical articles by Tuller, Coyne, IOM, ME Association, etc. You need to be able to show that you're not a loony but rather an informed citizen scientist and skeptic.

 

[Invisible Woman]

Is there any way that we can support you in this @Marky90?

You obviously rattled someone, otherwise they wouldn't have bothered. It looks like they are scared of others showing up at events & influencing opinions by making valid points and asking reasonable questions. It appears that just having a captive audience isn't enough for them....next it'll be an exclusion zone around the venues!

 

[Marky90]

Make sure to bring relevant critical articles by Tuller, Coyne, IOM, ME Association, etc. You need to be able to show that you're not a loony but rather an informed citizen scientist and skeptic.

Hear hear. I expect the police to drop this case, but if they do not; you can count on me to involve the media. I actually studied law before i got ill, so I know how to behave in that setting. I won`t interrupt the judge

 

[Marky90]

Is there any way that we can support you in this @Marky90?

You obviously rattled someone, otherwise they wouldn't have bothered. It looks like they are scared of others showing up at events & influencing opinions by making valid points and asking reasonable questions. It appears that just having a captive audience isn't enough for them....next it'll be an exclusion zone around the venues!

Let`s wait and see how this unfolds. If they want to pursue it when I don`t pay the fine, i would love to get some help from associations to shine some light on it. I look at it as a chance to get some publicity on our situation. It`s a David vs. Goliath scenario, and most folks usually like David.

 

[ScottTriGuy]

I look at it as a chance to get some publicity on our situation

Absolutely. You may even consider enlisting a PR company as volunteer consultants to help maximize exposure and craft your message.

@Jenny TipsforME has some good stuff in her blogs about framing messages, emotion words, etc.

 

[Aurator]

Let`s wait and see how this unfolds. If they want to pursue it when I don`t pay the fine, i would love to get some help from associations to shine some light on it. I look at it as a chance to get some publicity on our situation. It`s a David vs. Goliath scenario, and most folks usually like David.

The conclusion I'm left with, Marky, is that to equalize the struggle we have to have the ability to gather audiences of medical professionals together at conferences and get them to hear the other side of the story. How do we do that? How do we convince enough people in medical circles that it is not Chalder et al who can teach them anything about ME but the patient groups and the few doctors who support them, who are never given a fair hearing?

 

[user9876]

Exactly. I will argue that their charge violates my freedom of speech, but especially due to the circumstances: No Q & A, no treatment for patients, and false information in Chalders presentation. I even asked specifically for a Q & A before her talk.

I think it is noticeable how Chalder and others claim they are being harassed but issue threats to those who ask legit questions.

 

[Marky90]

The conclusion I'm left with, Marky, is that to equalize the struggle we have to have the ability to gather audiences of medical professionals together at conferences and get them to hear the other side of the story. How do we do that? How do we convince enough people in medical circles that it is not Chalder et al who can teach them anything about ME but the patient groups and the few doctors who support them, who are never given a fair hearing?

I concur wholeheartedly.

Some process is probably necessary

1. A medical breakthrough (e.g. a positive phase 3 rituximab trial)
2. That medical breakthrough must hit the headlines
3. The headlines must hit the eyes of the healthworkers & researchers, and get them interested
4. These healthworkers and researchers must become as engaged as us in the current state of affairs, and confront the psychobabblers
5. Another medical breakthrough
6. Rinse & repeat

And we should reasonably expect an exponential increase in medical professionals at ME-conferences.

I mean this is the process the psychobabblers haved used with sucess, only problem being that the studies are fake in their conclusions and methodology.

 

[Aurator]

I concur wholeheartedly.

Some process is probably necessary

1. A medical breakthrough (e.g. a positive phase 3 rituximab trial)
2. That medical breakthrough must hit the headlines
3. The headlines must hit the eyes of the healthworkers & researchers, and get them interested
4. These healthworkers and researchers must become as engaged as us in the current state of affairs, and confront the psychobabblers
5. Another medical breakthrough
6. Rinse & repeat

Sadly, I suspect you're right.
Your answer underlines just how unequal the struggle is. We will be able to convince people only after multiple medical breakthroughs, whilst Chalder and her coterie can already convince people with little more than thin air.

 

[Marky90]

Sadly, I suspect you're right.
Your answer underlines just how unequal the struggle is. We will be able to convince people only after multiple medical breakthroughs, whilst Chalder and her coterie can already convince people with little more than thin air.

Exactly. They`re spin doctors, clouding the understanding of real doctors and the general public.

 

[BurnA]

Unbelievable! They would have been better off doing nothing. They have now handed you an opportunity to make media aware, rally supporters outside court and air your views in court, which I assume will be open to the public and reporters.

Yes I think this is out best weapon in the next few years. Protest their gatherings as much as possible and if they complain or take action we expose them to the press and anybody else who is listening. It's actually a great opportunity, we get to disrupt their backslapping charade and we might even get publicity out of it!

 

[Asa]

(If possible) I believe a charge of wasting-police-time should be filed against the person(s) who alleged the complaint. And the healthcare authorities who invited Chalder should be charged with medical negligence, public endangerment, and such. Shameful and sad...