Trudie Chalder to speak at Norwegian Research Seminar

[eastcoast12]

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.

You are the fucking man. That is all I have to say

 

[eastcoast12]

And if you need any cash for legal fees I'll throw some in. Maybe set up a fund me page.

 

[BurnA]

And if you need any cash for legal fees I'll throw some in. Maybe set up a fund me page.

Yes i'll throw in some too.

This could be a great way to generate publicity! "ME sufferer thrown out of conference for sticking up for science needs help to pay legal bills "

 

[Marky90]

Gosh, that`s quite overwhelming of you guys! U rock Let`s see if they take my interruption of Chalder to court first, I`ll obviously pay for the broken glass myself.

 

[Denise]

Pardon if this has been posted before, but the Norwegian ME Association was also represented at the seminar with a lecture, a wonderful video from ME-patient Kristine (from the documentary Perversely Dark) and a few additional words from her mother.
Thank you!

It is VERY good to hear that there were some reasonable voices at this seminar. I hope the attendees learned from the patients!

 

[BurnA]

It is VERY good to hear that there were some reasonable voices at this seminar. I hope the attendees learned from the patients!

Sadly I doubt it - I imagine they have heard most of it all before but they ignore it.
Poor patients, they don't even know what they are saying.

 

[Woolie]

Ah if only it were true... We'd be the country where a cure for ME has been found. (Instead we're the country where no research on ME ever happened...)

You do have a great tradition of demonstration and civil disobedience. One I would be proud of if I were French.

 

[worldbackwards]

You do have a great tradition of demonstration and civil disobedience. One I would be proud of if I were French.

In Britain, of course, we have a great tradition of queuing.

*proud*

 

[Justin30]

Yeah - there's not really room for stuff like that if you're also arguing against powerful people, it'll just cause you trouble. The smashing of a coffee cup would be likely to undermine you in a situation like this, never mind if it does on to damage something else. Hopefully whatever legal process that it leads to won't be too much trouble.

I understand you and others feelings about this. But for 70 years ME has been:

• Disregarded
• Undereducated
• Covered up
• ME a neurological illness attempts at being burried in a CFS Psychological illness
• Wessely tried to change the definition at the WHO but knoe one really hears about this one
• We were given the name CFS which undermined the severity
• People have been institutionalized
• People have been harmed by GET
• People have been lied too
• Insurance companies were involved in the PACE trial and partialy funded it (i think i read this)
• People have lost families, friends, jobs, livelihoods
• You have a Group in Europe trying to say Dyautonomia is MUS and ME is MUS
• Britain where ME was first described has impacted healthcare systems worldwide with CBT and GET and has stunted research for decades
• People have died from ME
• Now in many countries if you are given a ME diagnoses they will stop testing you even though you could have a life threatening illness other than ME
• Isnt ME life threatening
• Reports show ME the lowest QOL scores of any chronic illness

How much more needs to be brought up I understand @Marky90 frustration. Though not Ok I understand.

I dont know how people in Europe cant be frustrated? They are trying to change ME and POTS both now known biological illnesses into MUS.

Yeah it might not look great but for those healthy enough in Europe protests are needed to stop this CBT, GET and MUS labelling.

I commend you Marky for sticking up for all that are to sick.

I was recently in Hospital and was abused by nurses that had my file. I couldnt defend myself cause I was crashing, I was helpless. I have nightmares about it.

Are we just supposed to accept it?

We have had negative publicity for many years not all but lots and now we are gaining ground in the US....

I hope the legal stuff doesnt affect you Marky....

I just dont get it who is supposed to stand up to these Powerful harmful people?????

 

[Esther12]

I just dont get it who is supposed to stand up to these Powerful harmful people?????

I'm not saying "don't stand up", or "don't challenge" at all.

I think Chalder is a quack and we need to do everything we can to effectively fight against her. But also, I think it's worth speaking honestly about the fact that some things are likely to be counter-productive. I totally recognise how understandable Marky90's frustration is, and how difficult it would be to restrain that while being forced out for interrupting a talk as misleading as the slides for Chalder's show hers to have been. I just don't want people to think that our legitimate frustration means that breaking the mug or glass door were useful things to do (I also don't want to act like I'm having to tell marky90 this, or going on at him, as he's already said it was a mistake).

We're not a scary group, we're too sick and too few, and action that can be presented as violent will not push people into taking our concerns more seriously. Instead, people with authority will just try to use it to discredit us. The people promoting the 'ME/CFS terrorists' stories know that they're exaggerating and fear-mongering, and they know that it works for them, so anything that gives them ammunition is to be avoided imo. I'd be pretty surprised if the breaking of a coffee cup was much of a propaganda coup for them, but who knows how the breaking of a door could be presented?

I'm not saying that any of this is fair, I'm just saying that as we're in an unfair situation, we need to be careful.

 

[Mrs Sowester]

I also want to add that as quotes from PR are taken out of context and used in proceedings against us we have to be extremely careful not to be seen as condoning or encouraging criminal acts.

 

[Justin30]

We agree on something she is a quack.

@Marky90 was abused for in Canada we have freedom of speach:

Seconds later a guy tried to manhandle me, I pushed him back and told him to f***k off

Many have been bedbound for more than 2 years which Marky has.

There is a serious problem going on in Europe? ME is now MUS and POTS is now MUS.

The one man on this whole forum after being sick for 2 years in bed throws a coffee cup and damages a door..a mistake he admitted...and yet most people cant even begin to think of standing up to her cause they are too sick.

Counter Productive is not figuring out how to effectively protest after 70 years of neglect. Thats counterproductive.

I commend and I forever grateful to those at MEAction for starting this.

MEAction is doing something about it and people are protesting.

I see small protests over in Europe which is great, though when it appears to me things are really not looking good Fitnit....trails with kids....MUS trying to be spread to the whole EU.....thats pretty scary...

I aknowledge the throwing of the coffee cup and his mistake.

I am seriously asking how do you stand up to these powerful people?

We are in an unfair situation and the group that spread their beliefs and influenced the world is promoting more harm.....

I know things are happening but things dont look good over their especially in some EU Countries.

The people promoting the 'ME/CFS terrorists' stories know that they're exaggerating and fear-mongering, and they know that it works for them, so anything that gives them ammunition is to be avoided imo.

Well maybe its time that a ME/CFS Patient Gets to stand up and share his story of neglect disdain and use of clinical trial drugs to help restore him to health. Because he is bedbound.

If the man aknowledged his regret for an action he made then I dont think more needs to be said.

 

[Justin30]

I also want to add that as quotes from PR are taken out of context and used in proceedings against us we have to be extremely careful not to be seen as condoning or encouraging criminal acts.

Agreed, I dont codone the behaviour of either Marky90 nor the person that manhandled him.

 

[ScottTriGuy]

To play devil's advocate - there are many forms of protest - there is no one right way to be heard - how the 'broken coffee cup' is framed in a narrative is as important as the act, off the top of my head example...the 'broken coffee cup' becomes a symbolic image of the broken health of ME patients, broken medical systems, broken research systems, and broken lives...with patients so sick and disabled the best they can muster in 'violent' protest is to break a coffee cup.

I'd be surprised if the incident received any media coverage.

I'd be inclined to explore how to leverage the incident into increased awareness and advocacy by connecting with a local professional public relations / communications company.

 

[TiredSam]

.the 'broken coffee cup' becomes a symbolic image of the broken health of ME patients, broken medical systems, broken research systems, and broken lives

Breaking down doors is quite symbolic too. The Watergate Scandal led to the uncovering of multiple abuses by those in power and the downfall of a president. We can only hope that the Coffeedoor Scandal may be the start of a similar process.

 

[Hutan]

BUT ... Until research exists and one has a clear answer must communities respect and listen to patients' experiences, so they do not damage.

Several of you the support services, will also meet seriously ill with some major trauma resulting from past painful encounters with the support services. This knowledge is important that you have so that you can meet the patient in a gentle manner, respectful and with a large dose of empathy. You can repair what is broken, and slowly inject new confidence and trust.

Imagine someone in the audience listening to those two very powerful and moving presentations from a patient and a parent of a patient.

and then hearing @Marky90 calling out during Chalder's talk and being swiftly ejected. Probably, the audience heard nothing of the coffee cup outside the conference room, the broken bits of which which would have been swiftly swept up.

It seems to me that, in this context, any empathetic member of the audience would see Marky90's actions as a graphic illustration of the 'major trauma resulting from past painful encounters with support services' and accumulated frustration that has arisen from not being listened to by the medical profession.

So, the combination of approaches inside the conference room may well have made a lasting and useful impression on the audience. And probably few actually saw or heard the 'coffee cup incident' outside the conference room.

 

[Marky90]

Case dropped.

I guess I was all in their heads.

 

[Denise]

@Marky90 - glad to hear it!

 

[Gingergrrl]

@Marky90 Me, too, and very happy for you that the case was dropped! That is great news.

 

[Comet]

@Marky90 Congrats!