Trudie Chalder to speak at Norwegian Research Seminar

Asa

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If the Norwegian ME association is having a speaker, can they not also submit material/info as a complementary conference package?

And as conference attendees (speakers included) plan what to wear, I suggest a t-shirt iron-on. :)

CBTGET Poison.PNG

EDIT: What about a university newspaper? Would they print a letter-to-the-editor criticism of the conference? / EDIT: https://en.wikipedia.org/wiki/Universitas_(newspaper)
 
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Marky90

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If the Norwegian ME association is having a speaker, can they not also submit material/info as a complementary conference package?

And as conference attendees (speakers included) plan what to wear, I suggest a t-shirt iron-on. :)

View attachment 15253

EDIT: What about a university newspaper? Would they print a letter-to-the-editor criticism of the conference?
They could, but they are not going to - I asked. They think it`s too much of a demonstrative action. Personally I just find it an hugely imporant thing to do; cause doing nothing when chalder and the like talk on conferences breeds malinformation.

Edit: I would like to add that the norwegian ME-association needs to think about their relation to this "national center for ME", it`s not always easy to know what the right strategy is.
 

BurnA

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They could, but they are not going to - I asked. They think it`s too much of a demonstrative action. Personally I just find it an hugely imporant thing to do; cause doing nothing when chalder and the like talk on conferences breeds malinformation.
Yes, the harm this talk can do should not by underestimated. It's disappointing that some people stand by and say nothing when they should be representing patients.
Makes me wonder sometimes .
 

Marky90

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Yes, the harm this talk can do should not by underestimated. It's disappointing that some people stand by and say nothing when they should be representing patients.
Makes me wonder sometimes .
I really just think it`s due to ME not really being part of any specific medical area, e.g. immunology. This will change in the next years, as immunosuppressives prove to work etc. Hopefully the psychies will then be outnumbered, not only by patients.
 

Asa

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In reference to BurnA above - and if I understood correctly.... Re what info the Norwegian ME association shares/doesn't share, I have a feeling there could be cultural differences at play here. Just my observation as an outsider to Scandinavian culture. (Edit: and a generalization of course.)
 
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They're an association - do their members know? Or are they misinformed? Could a Norwegian speaker check if they mention this on their website or facebook page?

In the UK the ME Assoc. would be flooded by comments from their members if this was happening here.
 

Marky90

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They're an association - do their members know? Or are they misinformed? Could a Norwegian speaker check if they mention this on their website or facebook page?

In the UK the ME Assoc. would be flooded by comments from their members if this was happening here.
It`s not the Norwegian ME assoc that arrange the conference, it`s something called the "national center for ME" which does. It`s part of one of our biggest hospitals.
 
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It`s not the Norwegian ME assoc that arrange the conference, it`s something called the "national center for ME" which does. It`s part of one of our biggest hospitals.
Sure, I understand. But I thought they were also speaking - doing the intro talk? If that's the case can/will they not highlight the current scenario in their talk (& handouts?). They don't have to mount an all out attack - just give a balanced summary of where things are currently. If they are providing handouts then links to David Tuller's work and Dr Goldin's could be included in that.

ETA: @Marky90 I appreciate all your efforts on this. Being the guy on the ground means I've ended up asking you - possibly adding to your own frustration which is not my intention. Thank you for emailing, keeping us informed & everything else you have done.
 

Marky90

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Sure, I understand. But I thought they were also speaking - doing the intro talk? If that's the case can/will they not highlight the current scenario in their talk (& handouts?). They don't have to mount an all out attack - just give a balanced summary of where things are currently. If they are providing handouts then links to David Tuller's work and Dr Goldin's could be included in that.

ETA: @Marky90 I appreciate all your efforts on this. Being the guy on the ground means I've ended up asking you - possibly adding to your own frustration which is not my intention. Thank you for emailing, keeping us informed & everything else you have done.
Ah ok - Yeah I think they will adress it in their talk, which is before Chalder. They have an article out on their homepage which raises concern over choice of speaker.
But there`s no biggie, if they wont do the handouts, i`ll just do it myself.

And thanks.. :)
 

TiredSam

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She responded that since the conference was not about the PACE-trial, it would do to place the leaflets on a table outside of the conference hall.
TC is giving a talk in London on 11th April:

Clinical Trial Controversies – the challenge of the PACE study, Trudie Chalder, Kings College London

So of course it's relevant to her talk, it's the basis of her "work" and she's making it her business to go around defending it.
 

Asa

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Don't know what became of the following... Perhaps someone (from/in the UK) could offer correction, insight (please - thank you)? But what about the following info* (summarized, not quoted) from a NICE director, on behalf of NICE? This seems to be an indirect comment on Chalder's "work", yes? Has she and/or her team addressed this criticism? If so, how?

Also, perhaps the medical professionals responsible for hosting (at what expense? paid by who? conflicts of interest declared where? are any reading this?) Chalder can share why they chose a speaker whose proposed solutions have been deemed a failure (by many, many players) and seem to be (though at a bureaucratic "speed") being phased out in their country of origin? Why export/import a failed product?

Info below pulled/gleaned from meeting minutes (third link) -- not a direct quote:

*In 2014, Professor Mark Baker Director of the (UK) National Institute for Health and Clinical Excellence (NICE)’s Centre for Clinical Practice stated in the House of Lords that NICE’s ME guidelines were limited in scope, lacked evidence, did not address ME’s real issues, had had a disappointing impact, and did not meet the needs of patients or NICE.

http://web.archive.org/web/20160402232643/http://www.meassociation.org.uk/2014/10/nice-guideline-over-to-nhs-england-but-swift-action-to-correct-their-classification-of-mecfs-18-october-2014/

http://web.archive.org/web/20160402232837/http://www.meassociation.org.uk/2014/07/forward-me-meeting-and-the-nice-guideline-on-mecfs-statement-by-the-me-association-10-july-2014/

http://web.archive.org/web/20160402233156/http://www.forward-me.org.uk/25th%20June%202014.htm


And though repeating myself... And though Norway is outside the EU, the EU Court of Human Rights states that member States have a positive obligation to protect citizens from harm. Are governments and government social agencies, including insurerers, that promote Chalder's "product" involved in human rights violations, by promoting "therapies" known to be harmful?
 
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I'm having a bit of a brain melt today so I haven't checked yet into the fine detail. As far as I know the situation in the UK re Professor Mark Baker's remarks is:

Prof Baker is a NICE representative. Around the time he acknowledged that the NICE guidelines were not effective / appropriate for pwME there was a re-organisation. NICE still exist but they now come under a group called NHS England.

Now any change of guidelines would have to be authorized by NHS England and not NICE. The hard work carried out by the Countess of Mar. Dr Charles Shepherd and numerous others now has to be redone dealing with the new NHS England.

To make it worse, ME/CFS has been placed on a "static" list. This means that guidelines/treatments for ME will not be reviewed for a number of years unless there is some amazing breakthrough.

The general election in the UK in 2015 in the UK meant the the All Parliamentary Party Group for ME/CFS lost some MPs who were helping us work toward changing the guidelines. After the election new MPs had to be found to help take up the cause.

Work is ongoing but very, very slow.

Perhaps @charles shepherd can confirm or rectify any mistakes I have made in this post?
 

Research 1st

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Guys, to my best knowedge, Professor Julia Newton (MRC associated Fatigue and POTS researcher in the UK) asked or was proposing for the TILT test to be given to all people with CFS/ME in the UK a as part of the NICE guidelines review and this idea was rejected by NICE. If correct, this is the sort of thing UK patients have to face. That CFS/ME is not allowed to be moderately, never mind strongly, associated to a chronic neurological disorder (POTS).

We see lots of political games in the UK regarding POTS denial in CFS.

For example, research has demonstrated POTS is correlated to those with an existing diagnosis of ME CFS, but the NHS website on CFS doesn't discuss POTS!.
Source:
http://www.nhs.uk/conditions/Chronic-fatigue-syndrome/Pages/Introduction.aspx

Equally bad, the 1 page NHS website on POTS, doesn't discuss CFS either!!!
Source:
http://www.nhs.uk/conditions/postural-tachycardia-syndrome/Pages/Introduction.aspx

This means, both conditions (CFS + POTS) don't know each other exists offcially in the public domain and thus the patients remain uninformed and kept more sick than they need to be. Saving the NHS lots of :moneybag: as the 'CFS' patients don't need any research to explain their autonomic dysfunction, as no one knows many have POTS., so psychological theories can remain, such as being ''fearful'' of exercise, leading to de conditioning tachycardia.

Who benefits from this? We know who. People who want to keep patients in the dark that many with CFS have a neurological illness called POTS, which has a diagnostic screening test, but is not known about or permitted to be given to the vast majoirty of those in the UK with CFS. To me, that is scandalous, as is the fact that Peter White (Trudie Chalder's colleague) was on the BBC Radio 4 in the UK years ago, saying that he'd not give CFS patients a TILT test (that diagnoses POTS) as to do so, would be ''unethical''. :bang-head:

With this level of ignorance about the two conditions, the patients (of many subsets) suffer, and that, is what's so wrong when it's the medical profession who are meant to be optimising patient care by preventing this in the first place!

People in power don't want control of BPS theory CFS wrestled from them as the 'Evidence Based' way to deliver care, as then so many other conditions will rapidly be associate to CFS, namely: POTS, EDS and Chronic Lyme - all physical conditions, which will NOT respond to CBT/GET/Pacing to treat them.

Thus, BPS theory of CFS should not be promoted as 'safe', 'effective' and 'cost effective' as too many people with CFS aren't neurotic, aren't avoiding exercise but cannot exercise due to a multi system disease, not researched and undiagnosed. To keep these patients trapped within a minority subset of psychogenic CFS (that may not even exist) is unethical and wrong, and none of these 'tours' should take place of people travelling around never mentioning the fact that the main ilness within CFS is indeed biological and that CBT/GET failed to treat them.

This such a waste of so many millions of lives with organic ME CFS POTS, when so much better could be done to fund biomedical research in people without Oxford Criteria CFS, arguably, MRC criteria CFS, as they green lighted the PACE trial and wasted £5 million that could have been spent on large scale testing for autonomic dysfunction in people with Fukuda and CCC criteria CFS, to determine a reliable percentage of those with POTS etc.

With the clearly failed single form of management in place (CBT GET) for multi causation syndromes and diseases (ME, CFS), a sub optimal outcome is guaranteed and suffering worsened for those affected by this. This in some cases, can mean patients die of their disease.

The sob stories in the media about vexatious requests, then become even more sad. The medical profession is not meant to cull patients difficult to treat patients, although they have an impressive past history of doing so when psychiatry is the stop or go sign:

In the past, from patients in the UK tied to a chair and given electric shocks to turn them straight on the NHS

Carolyn said: ‘I was taken into a darkened room, strapped to a chair and given electric shock treatment. The strategy was to make me associate what I wanted to be with pain.

'It took me 40 years to stop shivering at the thought of that treatment. People punished me in this way as if it was okay. You would not do that in a prison.

But I went along with it because I wanted to be cured and not different and dirty. It was a long time ago. It does not happen in this country now.'
Source:http://www.dailymail.co.uk/femail/a...tric-shock-therapy-cure-gender-dysphoria.html

...To the present, and forced GET in psychiatric wards which happens to ME CFS sufferers , and the rest of us left disabled (via no treatment due to inappropriate research direction) and thus effectively locked away in the homes unable to stand up or walk, the outcome is ruined lives for all.

And that's not acceptable in a democracy.
 
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Asa

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Should it be helpful (though original IOM sources woud be best... ):

"...the [US .gov] National Guidelines Clearinghouse, which requires that guidelines comply with the IOM standards for creating trustworthy guidelines. (The NGC is a federal government database that lists guidelines meeting evidentiary and other requirements established by the IOM.)..."
http://web.archive.org/web/20160408...news&utm_campaign=top-secret&utm_medium=email

And then re ME/CFS:

"CBT is a much publicized and debated psychotherapeutic intervention for ME/CFS that addresses the interactions between thinking, feeling and behavior. It focuses on current problems and follows a structured style of intervention that usually includes a graded activity program. CBT may improve coping strategies and/or assist in rehabilitation, but the premise that cognitive therapy (e.g., changing "illness beliefs") and graded activity can "reverse" or cure the illness is not supported by post-intervention outcome data..."
http://web.archive.org/web/20160408014743/https://www.guideline.gov/content.aspx?id=38316

"Bibliographic Source(s)
International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME). Chronic fatigue syndrome/myalgic encephalomyelitis. A primer for clinical practitioners. Chicago (IL): International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME); 2012. 41 p. [121 references]"
 

Sasha

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Guys, to my best knowedge, Professor Julia Newton (MRC associated Fatigue and POTS researcher in the UK) asked or was proposing for the TILT test to be given to all people with CFS/ME in the UK a as part of the NICE guidelines review and this idea was rejected by NICE. If correct, this is the sort of thing UK patients have to face.
What's your source for that, please?
 

Marky90

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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 her 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.
 
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