Video clip of a Australasian conference on MUS, mentions ME.

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anniekim

Senior Member (Voting Rights)
Moderator note:
Thread moved from 'General ME/CFS News'.


It’s interesting to listen to the last 2 minutes of this short 9 minute video, so starting at 7 minutes, where one of the doctors, the Chairman I believe, poses a question as if he is a ME patient. The response illustrates the gaslighting towards pwme.

 
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:banghead:
It really does feel like whack-a-mole. We people with ME can be working as hard as we can to educate medical professionals, but sessions like that can undo all of those gains.

I think there needs to be responses to this sent to the RACP, bringing things like the changed CDC advice to their attention. ANZMES needs to be responding.
 
Heeeeellllp!!!! That man has swallowed Per Fink's ideas wholesale (towards the beginning of the video). Worse, he's influential.

Professor Chris Kenedi [...] assists ACC in Wellington with external review of patients with complex and somatoform disorders [...] His research interests are: Factitious and somatoform disorders.
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Dr Kristy Bolter is currently the Service Clinical Director for Reablement Services at Auckland City Hospital.
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Reablement?!

The last panellist at least had the grace to look stonyfaced.
Ms Megan McEwen is a leading Clinical Exercise Physiologist [...]areas she is most passionate about, are in helping those with “invisible illnesses”. These include those with psychological distress (including depression, anxiety, stress and burnout) and mismanaged chronic pain and fatigue conditions (including somatoform disorders, CFS, Fibromyalgia, CRPS and central sensitisation disorders).
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All quotes from the RACP Congress website https://racpcongress.com.au/
RACP = Royal Australasian College of Physicians
 
Hutan said:
I think there needs to be responses to this sent to the RACP, bringing things like the changed CDC advice to their attention. ANZMES needs to be responding.
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@Marylib
Hutan said:
Times like this, I want to build wall to stop all these overseas experts infected with MUS ideas coming into New Zealand while we deal with our own outbreak and generally immunise the medical professions.
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My first thought was how can we get him deported. Not that our American members would appreciate having him back I suspect. But in the States his point of view would at least be somewhat diluted by all the other, good stuff going on. In a small country like NZ just one or two people like him can have disproportionate influence and do a lot of damage.

@RoseE

@anniekim Can you change the title to indicate it was an Australasian congress - to alert the Australians here?
 
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Ravn said:
@Marylib

My first thought was how can we get him deported. Not that our American members would appreciate having him back I suspect. But in the States his point of view would at least be somewhat diluted by all the other, good stuff going on. In a small country like NZ just one or two people like him can have disproportionate influence and do a lot of damage.

@RoseE

@anniekim Can you change the title to indicate it was an Australasian congress - to alert the Australians here?
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Done :)
 
Been trying to figure out what the best response would be.

There's probably not much we can do about it now. The conference is over and the attendees of the talk have gone home and either taken those psychosomatic ideas with them or, with luck, have forgotten them already because they weren't really listening in the first place because they only attended the conference for the social programme... I'm kind of hoping only people already infected with the MUS virus attended the talk and Kenedi was only preaching to the converted, which is bad enough but not as bad as spreading the virus.

Anybody feel up to commenting on Youtube (and dealing with all the potentially unpleasant backlash)?

It looks like this year's session on MUS was a follow-up to last year's session on the same topic. So maybe we need to keep a proactive lookout for next year's programme? Though what we could do to put our case more effectively then I haven't the first idea.
Medically unexplained symptoms – masterclass
You heard in 2018 why doctors struggle with dealing with medically unexplained symptoms. Attend in 2019 and gain an in-depth insight into how to deal with medically unexplained symptoms. Delegates will walk away fully equipped with tools, tips and a greater confidence to better manage their medically unexplained symptoms patients physical and mental health.
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https://racpcongress.com.au/timetable/tuesday-7-may-2019/
 
anniekim said:
It’s interesting to listen to the last 2 minutes of this short 9 minute video, so starting at 7 minutes, where one of the doctors, the Chairman I believe, poses a question as if he is a ME patient. The response illustrates the gaslighting towards pwme.
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The whole discussion reeks of self-satisfied pseudoscience. However, I do have some sympathy for the questioner in relation to ME/CFS - but only some.

He talks of patients bringing research studies and claiming that they show a real pathology. The truth is that as yet we have no studies that convincing show a pathology. The vast majority of studies show that such and such a pathology is not present. Where there is. study that suggests there might be there are almost always other studies that disagree.

So I can see that it is frustrating for doctors to be constantly told about weak studies. But the response is not to say we have no evidence for pathology. The evidence for pathology is in the clinical presentation itself. PWME are disabled and their story does not fit with it all being about false beliefs. Moreover, PACE shows that trying to counter false beliefs does not affect disability.

So there is a pathology we have not found yet, but the research studies are not so far helping - precisely because they have not found it.

I would discourage patients from using research studies to argue with doctors. I think charities make a mistake when they hype these studies. Mentioning research studies simply reinforces the false beliefs of these psychotherapy people that ME is all about false beliefs.
 
Jonathan Edwards said:
He talks of patients bringing research studies and claiming that they show a real pathology. The truth is that as yet we have no studies that convincing show a pathology.
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Good point! I think it is a problem that many studies are hyped and that many advocates claim that some selected studies provide definite proof that ME/CFS is a somatic illness. However, I do think that pilot studies and reported abnormalities on a group level have some significance, even if we don’t understand how they are connected or the underlying causal mechanisms. If they were of no scientific value at all, we wouldn’t be making these studies. They give supportive evidence to patient testimonies that multiple systems in the body are affected and provide hints for future research.
 
Jonathan Edwards said:
He talks of patients bringing research studies and claiming that they show a real pathology.
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My sympathy disappears when I discovered that most GPs don't bother regularly reading any peer reviewed research at all. I have asked doctors in many different social contexts and they all give the same answer - only doctors who do research, subsequently read research regularly.

These GPs should in principle be agnostic because they do not read any relevant literature. The fact that many have already made up their mind is a big worry. Patients bringing in literature should be a wake-up call that they need to do more research - and if the research is inconclusive, it is a wake-up call to demand more research be done, so that the condition can be explained.
 
Jonathan Edwards said:
So there is a pathology we have not found yet, but the research studies are not so far helping - precisely because they have not found it.
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There are many studies showing abnormalities. Some of these abnormalities seem to be real. Are these not a hint that there is a pathology and that patients aren't imagining things?

Ironically, patients are probably keen to cite these studies because they are trying to counter the idea of false illness beliefs. Not necessarily because they read about the cognitive behavioural model but because they are correctly sensing that they're not being believed.
 
https://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=12136294

"They said to me 'We've got this specialist in your condition we want you to see'. I thought 'Oh great, an Ehlers-Danlos specialist'. I had no idea he was a psychiatrist."

Palmer was wheeled in her hospital bed to a private room where she says Kenedi asked her support person to leave.

"I didn't know going into that assessment what it was. They didn't tell me it was a psychiatric assessment. If I'd known, I wouldn't have gone."

But Kenedi later wrote that he clearly introduced himself and stated his role at that first meeting with Palmer.

Ten minutes into the session Palmer claims she realised she was being psychiatrically evaluated.
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https://www.nzherald.co.nz/index.cfm?objectid=12173126

Aston and a second woman, Nichola Smith, each complained to the Health and Disability Commissioner about Kenedi's assessments of them but were told it was not the HDC's role to intervene in a disputed diagnosis.

A third woman, Dr Rachel Palmer, complained to a disability advocate and says Kenedi tried to assess her without properly introducing himself as a psychiatrist.

Now the three women are having difficulty getting the treatment they believe they urgently need, which they claim is a direct ramification of their psychiatric evaluations.

A fourth EDS patient seen by Kenedi - Georgie Ferris - lost 20kg and was planning her funeral before doctors finally treated her.

All four patients say the assessments by Kenedi were unwanted and breached their rights under the Code of Health and Disability Services Consumers' Rights.
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"Managing Difficult Encounters Chris Kenedi M.D."
http://www.gpcme.co.nz/pdf/2016 North/Thur_Room7_0830 Difficult pt and the brainGP CME 2016.pdf
The Dependent Clinger • The Entitled Demander • The Manipulative Help-Rejecter • The Self Destructive Denier
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