1st ME/CFS Canadian Collaborative Conference

[brf]

Here's the ACE 'Adverse Childhood Experiences' Questionnaire.

https://www.ncjfcj.org/sites/default/files/Finding Your ACE Score.pdf

There's no place for this kind of thing in the ME world anymore.
These attitudes have prevented us from developing and accessing treatments long enough.
They need to be treated as the dinosaurs they are - and not with gentle kid gloves either.

 

[JaimeS]

Thats the thing, coincidence doesn't make causation, or i should say correlation is not causation even if they want to believe it is.

I'm saying that, based off of those numbers, they don't have a leg to stand on.

The issue I always think about regarding adverse childhood events is this . . . Those whose lives have not been derailed by chronic illness are less likely to do much "soul searching" in an attempt to establish what may have contributed to their current health concerns.

Did have a bit about recall bias, but deleted it. Went looking for studies about recall bias in childhood trauma reports, and needless to say there weren't a lot of people keen to invalidate/cast doubt on work within their own specialty.

 

[Alvin]

I'm saying that, based off of those numbers, they don't have a leg to stand on.

Very true, though zombie ideas are hard to kill, politicians depend on zombies for example and achieve great 'success'

 

[ScottTriGuy]

The infamous 'Learned Helplessness' slide by Dr Alexis Goth.

I interviewed her after her presentations and challenged her on this slide. We'll post the interview at some point in the near future. Suffice to say her reply was babble. Turns out she's only seen about 10 - 15 ME patients. She was also challenged by a few patients in the halls, and to her credit, seemed open to the feedback.

 

[Milo]

The infamous 'Learned Helplessness' slide by Dr Alexis Goth.

I interviewed her after her presentations and challenged her on this slide. We'll post the interview at some point in the near future. Suffice to say her reply was babble. Turns out she's only seen about 10 - 15 ME patients. She was also challenged by a few patients in the halls, and to her credit, seemed open to the feedback.

And she thought that this slide was a good idea in a ME scientific meeting because...

 

[Alvin]

The infamous 'Learned Helplessness' slide by Dr Alexis Goth.

She looks so happy about that slide...

 

[Snowdrop]

It presents as quite infantile. Who does she think she's talking to -- 3 year olds.
Embarrassing.

 

[Milo]

It presents as quite infantile. Who does she think she's talking to -- 3 year olds.
Embarrassing.

Must agree @Snowdrop and it has underlying flavors of childhood adversity. Then suggestions that empowerment will lead to better functioning. This is so very wrong.

The rest of her presentation does not make sense.

 

[Snowdrop]

When I here about or read this kind of thing I'm never quite sure which direction I want to go after first.

On the one hand it seems like one of those situations where the person is a hammer and every person that comes through their life is a nail or at least a potential nail.

It's not a bad impulse to want to help people but things like this persons position come off as youthful enthusiasm meets a complete lack of rigour or consideration of any alternative explanations for what it is they're seeing because if some other explanation fits then it would render them not useful.

So it comes down to it being all about them. Their enthusiasm. Their expertise. They can't listen anymore or hear anything that does not fit the paradigm.

To be fair it seems in this case that the extreme at least may not be the case as Jaime has mentioned that she seemed receptive to at least the pretense of listening to alternatives.

I also blame the forces that conspire against a robust education system that allows people to go out into the world lacking any sort of critical skill to assess ideas that they come across. People wind up believing whatever popular theories they first come into contact with that fill their own emotional needs.

Bias is universal we all need to be vigilant.

And last, it would seem that psychology has a very big and distinct advantage. Somehow it's just sexier to form opinions about others that are based on psychological needs rather than any possible biological model. Anybody can psychologise but not everybody can be a Dr I guess.

The problem here is that it plays right into the hand of the people who like to keep us all from realising that as well as biological realities there are very real sociological reasons for for what they might see in front of them and that it's these issues that need attending to (in other words the fix is needed for the situation not the person-- although I acknowledge that with past trauma this might not apply directly here). And I believe @Woolie has said this better elsewhere.

 

[MsUnderstood]

Here's a brief description of the conference from one of the Canadian clinicians who attended and presented:

http://eleanorsteinmd.ca/news/

I'd be very interested in hearing from any members who attended or viewed Doctor Stein's presentation on Neuroplasticity. I pulled up her Powerpoint presentation under the Publications tab on the above website, and have a few questions regarding how this theory may be relevant for our patient group.

First, #4 under Stages of Change is: "Learn new skills. Practice more than 1 hour/day. To change the brain requires concentration and effort." For me, each attempt to learn new skills results in a "crash" due to the concentration and cognitive effort required. Heck, I've forgotten most of my old skills, despite trying to use them.

Even more perplexing is a reference to a book titled "Wired for Healing" by Annie Hopper. From Amazon.com:

"Annie Hopper had exhausted the medical system and was still suffering from disabling symptoms of multiple chemical sensitivities, fibromyalgia and electric hypersensitivity syndrome. Hopper deduced that a toxic trauma had over-activated threat and protective mechanisms in her brain that were keeping her body stuck in a cycle of chronic illness and inflammation. In her ensuing search for healing, she created The Dynamic Neural Retraining System (DNRS) program - a drug-free, neuroplasticity-based approach to remap neural pathways in the limbic system. Since 2008, the program has helped countless people recover from many chronic conditions that have baffled the medical system for decades, such as Multiple Chemical Sensitivities, Fibromyalgia, Chronic Fatigue Syndrome, Chronic Pain, Food Sensitivities, Electric Hypersensitivity Syndrome, Post-Traumatic Stress Disorder, Depression and Anxiety, Irritable Bowel Syndrome, Postural Orthostatic Tachycardia Syndrome, Inflammatory Conditions and other Chronic Illnesses."

Doesn't the above describe something similar to the treatment approach recommended under the dreaded Central Sensitization Syndrome theory of ME? Or, am I not understanding something here?

Then there are a couple of slides on Ashok Gupta's Amygdala Retraining Program. Hmmm.

And, under the heading "How to Rewire the Brain":

1. Be aware of what you want to change (clear intention).
2. Use each awareness of an unwanted symptom or thought as an opportunity to rewire the brain.

I guess what I'm asking here is whether or not the content of this particular presentation was well-received, or if it was one example of why those patients more "in the know" about the ME climate in Canada are concerned.

 

[Milo]

Here's a brief description of the conference from one of the Canadian clinicians who attended and presented:

http://eleanorsteinmd.ca/news/

I'd be very interested in hearing from any members who attended or viewed Doctor Stein's presentation on Neuroplasticity. I pulled up her Powerpoint presentation under the Publications tab on the above website, and have a few questions regarding how this theory may be relevant for our patient group.

First, #4 under Stages of Change is: "Learn new skills. Practice more than 1 hour/day. To change the brain requires concentration and effort." For me, each attempt to learn new skills results in a "crash" due to the concentration and cognitive effort required. Heck, I've forgotten most of my old skills, despite trying to use them.

Even more perplexing is a reference to a book titled "Wired for Healing" by Annie Hopper. From Amazon.com:

"Annie Hopper had exhausted the medical system and was still suffering from disabling symptoms of multiple chemical sensitivities, fibromyalgia and electric hypersensitivity syndrome. Hopper deduced that a toxic trauma had over-activated threat and protective mechanisms in her brain that were keeping her body stuck in a cycle of chronic illness and inflammation. In her ensuing search for healing, she created The Dynamic Neural Retraining System (DNRS) program - a drug-free, neuroplasticity-based approach to remap neural pathways in the limbic system. Since 2008, the program has helped countless people recover from many chronic conditions that have baffled the medical system for decades, such as Multiple Chemical Sensitivities, Fibromyalgia, Chronic Fatigue Syndrome, Chronic Pain, Food Sensitivities, Electric Hypersensitivity Syndrome, Post-Traumatic Stress Disorder, Depression and Anxiety, Irritable Bowel Syndrome, Postural Orthostatic Tachycardia Syndrome, Inflammatory Conditions and other Chronic Illnesses."

Doesn't the above describe something similar to the treatment approach recommended under the dreaded Central Sensitization Syndrome theory of ME? Or, am I not understanding something here?

Then there are a couple of slides on Ashok Gupta's Amygdala Retraining Program. Hmmm.

And, under the heading "How to Rewire the Brain":

1. Be aware of what you want to change (clear intention).
2. Use each awareness of an unwanted symptom or thought as an opportunity to rewire the brain.

I guess what I'm asking here is whether or not the content of this particular presentation was well-received, or if it was one example of why those patients more "in the know" about the ME climate in Canada are concerned.

My opinion is... medicine is everything but what is currently offered for patients with ME in Canada. We deserve so much more than being told to learn a new music instrument, or to meditate or to eat broccoli. Insert expletive comment here.

 

[Woolie]

The problem here is that it plays right into the hand of the people who like to keep us all from realising that as well as biological realities there are very real sociological reasons for for what they might see in front of them and that it's these issues that need attending to (in other words the fix is needed for the situation not the person-- although I acknowledge that with past trauma this might not apply directly here). And I believe @Woolie has said this better elsewhere.

I don't remember saying anything like this, @Snowdrop, but I completely agree.

I do agree that society and environment in general can play a huge role in certain forms of psychological distress. For example, a woman from an underprivileged background, no money, no job skills, no real options, who ends up trapped in an abusive relationship. And depressed.

Suggesting a role for "past trauma" is sexy and interesting, and it can feel satisfying to blame current problems on another person's misdeeds (psychology has a very bad record at encouraging this, remember the big to-do in 80s and 90s about suppressed memories of abuse?). The reality is probably something much less exciting and less Freudian - simply not having many practical options, and not having developed the sorts of life skills of someone from a more nurturing environment. Its probably better to address these current limitations than to endlessly revisit some past trauma. That idea that talking about the trauma is therapeutic - we're not even sure that's true any more. Seems to be some evidence that in disasters, mass shootings, etc, people do better if they don't talk in detail about their experiences, at least for the first few months.

Either way, though, I wish they would stop it with the claims that people's "negative thoughts" are at the bottom of these things. That you just have to change those and everything will be hunky dory. They're a product, not a cause. A product of having no real options and having no life skills. Or a product of some biological dysfunction that's affected our mood. Or maybe a mix of the two.

 

[Dechi]

Here's a brief description of the conference from one of the Canadian clinicians who attended and presented:

http://eleanorsteinmd.ca/news/

I'd be very interested in hearing from any members who attended or viewed Doctor Stein's presentation on Neuroplasticity. I pulled up her Powerpoint presentation under the Publications tab on the above website, and have a few questions regarding how this theory may be relevant for our patient group.

First, #4 under Stages of Change is: "Learn new skills. Practice more than 1 hour/day. To change the brain requires concentration and effort." For me, each attempt to learn new skills results in a "crash" due to the concentration and cognitive effort required. Heck, I've forgotten most of my old skills, despite trying to use them.

Even more perplexing is a reference to a book titled "Wired for Healing" by Annie Hopper. From Amazon.com:

"Annie Hopper had exhausted the medical system and was still suffering from disabling symptoms of multiple chemical sensitivities, fibromyalgia and electric hypersensitivity syndrome. Hopper deduced that a toxic trauma had over-activated threat and protective mechanisms in her brain that were keeping her body stuck in a cycle of chronic illness and inflammation. In her ensuing search for healing, she created The Dynamic Neural Retraining System (DNRS) program - a drug-free, neuroplasticity-based approach to remap neural pathways in the limbic system. Since 2008, the program has helped countless people recover from many chronic conditions that have baffled the medical system for decades, such as Multiple Chemical Sensitivities, Fibromyalgia, Chronic Fatigue Syndrome, Chronic Pain, Food Sensitivities, Electric Hypersensitivity Syndrome, Post-Traumatic Stress Disorder, Depression and Anxiety, Irritable Bowel Syndrome, Postural Orthostatic Tachycardia Syndrome, Inflammatory Conditions and other Chronic Illnesses."

Doesn't the above describe something similar to the treatment approach recommended under the dreaded Central Sensitization Syndrome theory of ME? Or, am I not understanding something here?

Then there are a couple of slides on Ashok Gupta's Amygdala Retraining Program. Hmmm.

And, under the heading "How to Rewire the Brain":

1. Be aware of what you want to change (clear intention).
2. Use each awareness of an unwanted symptom or thought as an opportunity to rewire the brain.

I guess what I'm asking here is whether or not the content of this particular presentation was well-received, or if it was one example of why those patients more "in the know" about the ME climate in Canada are concerned.

I attended and although my memory is really had and doesn’t serve me well, I remember a patient asking a question at the end regarding how this would apply to us with ME, as practicing 1 hour a day would be very hard, and there is not one single thing we need to rewire our brain for, but so many that it seems unrealistic to even try.

She was sceptical and so was I and probably many others. I’m not saying it can’t work, but I don’t believe it would for a complex disease affecting so many systems.

 

[Milo]

I attended and although my memory is really had and doesn’t serve me well, I remember a patient asking a question at the end regarding how this would apply to us with ME, as practicing 1 hour a day would be very hard, and there is not one single thing we need to rewire our brain for, but so many that it seems realistic to even try.

She was sceptical and so was I and probably many others. I’m not saying it can’t work, but I don’t believe it would for a complex disease affecting so many systems.

So why exactly did she present on this, as a clinician seeing patients and as a patient herself? Like how many useless things have patients tried over the years, how much of it worked and significantly improved their health, how much of it is placebo response, amd how much of it sets the patients back a couple of notches?

Lastly how much more woo-woo medicine must be endured before we get access to competent, science-based, scientifically proven treatments?

 

[Inara]

how this would apply to us with ME, as practicing 1 hour a day would be very

I am almost practicing 1 hour a day, and I can tell you it doesn't work; at least not for me. Maybe I don't have the right mindset. Maybe I'm too positive?

I can't hear that "reprogramming" sh** anymore. I know at least one person with ME whom I would view as very competent in "reprogramming", and of course it doesn't help. That this stuff is allowed to be presented on conferences...

That's just my opinion. If someone here thinks Gupta&Co. are great, fine with me.

 

[MsUnderstood]

I attended and although my memory is really had and doesn’t serve me well, I remember a patient asking a question at the end regarding how this would apply to us with ME, . . .

She was sceptical and so was I and probably many others.

Thanks, @Dechi . I'm glad to hear I'm not the only one skeptical about this approach.

So why exactly did she present on this, as a clinician seeing patients and as a patient herself?

@Milo That's what I've been wondering. I've been following Doctor Stein for many years, and have always considered her to be among the doctors who truly understand that ME is a biological, and not a psychological, illness.

According to the March 2018 Newsletter on her website, she is currently assisting her ME patients in transferring to other medical providers. Perhaps her presentation at the Montreal Conference was her way of focusing on her new practice interest while at the same time retaining her contacts in the ME field. Who knows.

I am almost practicing 1 hour a day, and I can tell you it doesn't work; at least not for me.

. . . I know at least one person with ME whom I would view as very competent in "reprogramming", and of course it doesn't help.

@Inara I, too, have tried, and failed, to reprogram my brain. For example, knitting is supposed to be a meditative activity that keeps one's brain sharp. For me it's exhausting, and causes severe cognitive decline -- the exact opposite of what it's supposed to do.

I'd be delighted if the suggestions made in Doctor Stein's presentation would work for ME patients, especially if something could be done to balance the parasympathetic and sympathetic nervous systems. But how realistic is it, especially for those of us with a viral trigger as opposed to "toxic trauma" as described in "Wired for Healing"?

 

[JaimeS]

eople wind up believing whatever popular theories they first come into contact with that fill their own emotional needs.

Suggesting a role for "past trauma" is sexy and interesting, and it can feel satisfying to blame current problems on another person's misdeeds...

Its probably better to address these current limitations than to endlessly revisit some past trauma. That idea that talking about the trauma is therapeutic - we're not even sure that's true any more. Seems to be some evidence that in disasters, mass shootings, etc, people do better if they don't talk in detail about their experiences, at least for the first few months.

If only I could grab a handful of you and start up a lab. I'm always struck by how clever and clear-headed a group this is...

Which, given brain fog issues, may be more of an indictment of the rest of humanity.

 

[JaimeS]

And she thought that this slide was a good idea in a ME scientific meeting because...

just as the Canadian conference from 30 years ago went no where.

Was this the first conference on ME/CFS in Canada for 30 yrs? I seem to recall someone saying that.

 

[Alvin]

Did anyone else get an e-mail entitled

Evaluation - ME/CFS Conference - Montreal 2018

The link included appears non personalized
https://fr.surveymonkey.com/r/MECFS2018

 

[Helen]

If it´s wrong to post about different talks here, please let me know and I´ll move my post.

Does anyone have any comment to this talk ME/CFS Pharmacotherapies and Drug Interactions /Kevin Mejo?

I found this tweet interesting as I long time ago got to know about my gene defects that has a negative impact on detoxification of drugs and other substances. Mejo seems to have highlighted that PWME have more of these problems than healthy people.