Ric Arseneau, Clinical professor of internal medicine, University of British Columbia, Canada

Trish

Trish

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I am starting a thread about Professor Ric Arseneau because I have come across some information about him that is concerning. I understand he gave an online presentation to people with ME/CFS, FM and related conditions.

Here's a link to the slides from the presentation:
bit.ly/ffdec2021

The slides are mostly links to material we will find familiar, but the particular selection of hypotheses, research and treatments included in a presentation aimed at patients and their families and friends is concerning.

Topics emphasised include childhood trauma among triggering factors, and central sensitisation and the stress/HPA axis theories as perpetuating factors.

There are extracts from assorted research papers which give the presentation the appearance of being strongly science based, but it all leads up to a treatment section at the end that includes the minimally evidenced drugs currently being researched and or prescribed like LDN, Aripiprazole and Cortene, as well as vagal stimulation.

But the key to the whole talk seems to be a strong emphasis in the treatment section at the end on LP-like quackery, specifically the Gupta program, Neuroplastics, the Dynamic Neural Retraining System, and several pages about a McMaster University presentation from 2019 called 'Neuroplasticity based treatment for fibromylagia, chronic fatigue and multiple chemical sensitivity: feasibility and outcomes'. This appears to be an unpublished study, for which some data is given.

I understand than Professor Arseneau himself charges thousands of dollars to treat individuals privately using the McMaster program.

It seems quackery is alive and thriving in Canada.
 
The slideshow is just a mishmash of the various popular ideas out there. I'd have to see the actual presentation to know what is going on, because many of the studies discussed are not complementary (some are contradictory) and cannot be combined to form a consistent theory.
 
Dr Arseneau is one of the doctors that sees ME patients at the BC Women's Hospital Complex Chronic Diseases Program in Vancouver.
This is the only specialized clinic offered by the BC government for people with ME and going through the program can be a requirement of receiving disability benefits. The wait list is over 2 years long.

Dr Luis Nacul was appointed Medical Director of the CCDP a couple of years ago and the ME community was excited about the positive changes that would be made. Can anyone shed more light on this?

http://www.bcwomens.ca/our-services/specialized-services/complex-chronic-diseases-program#About
 
Helene said:
Can anyone shed more light on this?
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There's some discussion of Luis Nacul on this thread, in his presentation when he took up that Canadian clinic position.
Dr Nacul speaking tomorrow (Saturday), livestreamed

There were indications in that presentation that he might not provide the leadership on evidence-based care that we were hoping for. Unfortunately, so many of the people we might view as allies hold views about ME/CFS that have unhelpful nuances.
 
Hutan said:
There's some discussion of Luis Nacul on this thread, in his presentation when he took up that Canadian clinic position.
Dr Nacul speaking tomorrow (Saturday), livestreamed
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Thank you @Hutan The thread does give me some background. I remember excitedly watching Dr Nacul's presentation and following this got my family doctor to send in a referral to the CCDP. I thought by the time I got in there might be better treatment. It's been over two years and I haven't heard from them yet.

I remember Dr Nacul answering a question on Central Sensitivity Syndrome after the presentation and responding with a smile saying he thought there was more to ME than that. My take then was he was just being polite and CSS would soon be gone from the program. I guess I misread that.

On the positive side CCDP has been all online since the start of COVID. I have heard positive things about patients getting a diagnosis, the paperwork for disability support and management advice. But waiting over 2 years for this makes no sense.
 
Trish said:
I understand than Professor Arseneau himself charges thousands of dollars to treat individuals privately using the McMaster program.

It seems quackery is alive and thriving in Canada.
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I live in Metro Vancouver and I've never heard of this doctor before. He works out of St Pauls Hospital which is a very well respected hospital. We don't have private medical care here in Canada so I'm not sure how he could be treating patients privately and charging them thousands of dollars.
 
As Snow Leopard said, there's a lot of different ideas and topics covered in this presentation, as if he wanted to cover as many things as possible. Without the presentation itself it's difficult to tell which ideas he supports, and how and to what extent he supports them.

There's definitely good bits in there, as well as bad bits.
 
Glad this thread was started. There is alot to say about Dr A and the problems he is/has caused here in BC. He works out of St Pauls, the complex chronic disease program for people with ME and privately. I'm crashed but hope to gather up info and place it on this thread later. He is the one who has pushed CSS here and just recently he mentioned in a talk that most people with ME have borderline personality disorder...ffs
 
Borderline Personality Disorder is characterized by intense, unstable emotions and relationships as well as insecurity and self-doubt. BPD makes everything about a person feel unstable, ranging from moods, thinking, behavior, relationships, and sometimes identity.
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To me, (and of course I have no training in mental illness), that sounds like a description of how someone is behaving rather than a diagnosis of a discrete disease. The description might fit a whole range of causes, each with different treatments. For example, a cause could be chemical disturbances in the brain, or it might just be a normal response to a sudden and very negative and fundamental change in one's circumstances. For example, suddenly finding that you no longer have the capability to engage in your previously good life and are plagued by a whole range of difficult symptoms might easily lead to unstable emotions including insecurity and self doubt. It might lead to family, friends and work colleagues not being sure how to react, and turning away, further exacerbating emotional problems in the person experiencing the change in circumstances.

When your previous identity as a competent self-reliant person with a career and relationships and realistic hopes is suddenly changed, it's entirely reasonable that you will experience periods of intense unstable emotions, insecurity and self-doubt. The self-doubt must surely be worse when the medical cause is unclear and contested, as in the case of ME/CFS. Even someone who can cope most of the time might express their frustration and anger and sadness to a clinician that they think might understand and who invites such revelation.

Therefore, any clinician suggesting that most people with ME/CFS have BPD clearly is suffering from an empathy deficiency, at least with respect to ME/CFS patients.

There's this 2010 article about the possibility of ME/CFS being, or overlapping with, personality disorders
Chronic Fatigue Syndrome Patients Grow Weary of Doubt
"Having an illness suddenly develop out of the blue, where doctors aren't sure what it is and there aren't standard tests for it will have a psychological effect on the person," said Komaroff. "It would on me."
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Reading the Rate MDs site, (there are a lot of ratings of Arseneau) the impression I get is that he favours diagnoses of central sensitivity, and does little in the way of carefully ruling out other causes. Some patients seem content with that, others are not. There's a comment there from a person who was later found to have Whipple's disease (a chronic infection which can be fatal if untreated) but who was given a CSS diagnosis.

If most ME/CFS patients appear ungrateful or angry about the service a clinician provides them, I can see why that clinician might want to suggest that those people have a personality problem.
 
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Not McMaster’s University again….This is outrageous. I diagnosed and treated many people with BPD, none had ME/CFS. Most of them had significant neglect and abuse in childhood and is a highly distressing illness and pwBPD work very hard to overcome this.

Unfortunately any intense emotion expressed by a women is often characterised as BPD by many people in medicine and society.

A personality disorder diagnosis is made longitudinally and not on a one-off encounter with a psychiatrist/GP/etc. This is unprofessional.

It is normal behaviour to feel angry and fed up with this illness especially with clinicians like this…
 
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Hutan said:
If most ME/CFS patients appear ungrateful or angry about the service a clinician provides them, I can see why that clinician might want to suggest that those people have a personality problem.
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Most large businesses have something called customer services, where ungrateful or angry customers can be listened to, have their dissatisfaction resolved, and the company can make amends or change its procedures to make sure those who interact with them don't end up ungrateful or angry again. At least in theory. A business in the habit of blaming their customers and calling them names instead of listening to them wouldn't last very long. At least in theory.

Medicine seems to operate on different principles, probably because the balance of power is different and some clinicians have no hesitation in abusing that power imbalance. What we need is a system of weeding out clinicians suffering from Empathy Deficiency Syndrome, which clouds their judgement and harms patients.
 
Kalliope said:
I stopped listening after he said ME/CFS is in the same family as PTSD.
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Somehow managing to be insulting to both people with ME and people with PTSD. It used to be mostly compared to depression, but that shift has really cemented with Long Covid. So damn insulting to people who live through serious trauma, especially while selling the mantra that "COVID is just a cold" while pretending that it makes sense to attribute LC to the 'trauma' of having COVID. What a bunch of lazy BS.

My intuition remains that this is mostly caused by MDs seeing what went on behind closed doors during the peaks of the pandemic, and being oblivious to the fact that most people were completely unaware of it. They simply project their own experience onto the whole population. Even though the vast majority of MDs did not experience any of it, it was mostly those in emergency care who did, who were also the people most exposed to COVID, where COVID is a far more rational explanation but the fantasy excuse is always preferred anyway.

Damn the superstitious nature of most humans. I really much prefer substitious professionals.
 
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