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

[anniekim]

That little laugh from the female, right after the questions is asked - says it all, doesn't it...?

It actually really got to me, stepping away from this thread for now.

Yes, their smug laughs talking about the ‘elephant in the room’ were hard to listen to. They patronisingly acknowledge patient’s anger but never cease to not ask why patients are angry - their treatments don’t work and worse of all can make us worse.

 

[rvallee]

Heeeeellllp!!!! That man has swallowed Per Fink's ideas wholesale (towards the beginning of the video). Worse, he's influential.



Reablement?!

The last panellist at least had the grace to look stonyfaced.


All quotes from the RACP Congress website https://racpcongress.com.au/
RACP = Royal Australasian College of Physicians

How is that crap any different from brainwashing? The evidence base for this doesn't even come close to rise to the level of being legitimate. Some serious accountability is needed, medicine is completely losing the plot over this.

 

[Snow Leopard]

"Key take home message to understand: what we've learned over the last ten or eleven years, primarily in Europe I have to say, is that all functional disorders are the same, that they present in different ways, but they're related to the same neuroanatomy and neurophysiology.

Here is the "latest thought from Europe":
https://www.sciencedirect.com/science/article/pii/S2213158219301482

The above review shows a striking lack of evidence of markers in the brain that are constant across functional disorders.

I also think there is clear bias in the brain regions he has singled out. The anterior cingulate, the prefrontal cortex and the lymbic system, what do these regions have in common? They're all important parts of emotional regulation in the brain. For motor disorders, wouldn't it make more sense that the functional disruptions are in parts of the brain involved in motor signalling and feedback? Or parts of the brain involved in afferent feedback, such as the cerebellum and brainstem?

There was another thread a while back with a presentation in it that had a list of these "adverse childhood events", and it had everything from being abused to "falling out with a friend". Absolutely anything goes.

Right! These people have no idea why specificity is important in science...

 

[rvallee]

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.

We don't have the full solution to the puzzle. It is hard to predict from the pieces what the solution will be. But to continue to dispute that there is a puzzle at all is completely unreasonable at this point. The alternative psychosocial explanation is extremely weak and has by now shown itself to be as intellectually bankrupt as it is ethically bankrupt.

Ultimately what can't be disputed is that the current approach is a massive failure and the exact worst thing to do is more of the thing that has failed. Some countries have adopted the CBT/GET paradigm, some did not. There is no measurable difference between those who did and those who did not. After 20+ years, this settles it. When something fails to produce results after decades, it is the definition of insanity to keep pushing for it and by now the evidence of harm and suffering is so overwhelming that it rises to the level of criminal negligence to keep systemic discrimination as the status quo.

What I hate most about this is the reckless indifference to consequences. These people are so confident that our experience can be contradicted whole that they do not pay attention to what amounts to hundreds of thousands of legitimate complaints of harm and negligence. This will inevitably have serious legal repercussions.

 

[rvallee]

You get these patients and they have this hyper arousal state they live

Literally could not have better described the exact opposite of who I am. I don't know what thought process convinces this guy to think he can read minds but this is less than ideal when dealing with sick and vulnerable people. What arrogance.

Someone needs to teach these idiots about fundamental attribution errors.

 

[rvallee]

"Key take home message to understand: what we've learned over the last ten or eleven years, primarily in Europe I have to say, is that all functional disorders are the same, that they present in different ways, but they're related to the same neuroanatomy and neurophysiology. It does not matter if you have chronic fatigue, fibromyalgia, chronic pelvic pain […] irritable bowel syndrome or gastroparesis. These are the same disorders that relate to disruption in the feedack system between the anterior (?) the prefrontal cortex and the lymbic system and the organs."

Extraordinary claims with exactly zero evidence. Literally just a gut feeling.

Centuries of science have shown that this is exactly the wrong way to go. It takes a supreme level of incompetence to keep going this way after so many hard lessons.

But I guess it's OK since none of them will experience harm from this, they are perfectly safe from the mistake they make and the suffering they impose on millions. The same mistake over and over again, with a fresh coat of paint.

 

[Obermann]

Like everyone else I would like to think these studies may be picking up hints. However, my impression is that much the most likely effect on mentioning studies like this to doctors is that the doctors will feel that their suspicion that ME is all about false beliefs is confirmed.

I agree with your main point that we don't know much about ME/CFS, we have no understanding of the underlying pathophysiological processes, and single studies are often hyped. However, I would like to think that some of the pilots have provided useful clues and hints—you quote some of them in your paper with McGrath, Baldwin, Livingstone, and Kewley in 2016. The proposition by some critics that we haven’t found anything of value is also hyperbolic.

 

[rvallee]

It is just that they have no concept of how to gather reliable evidence for what they already believe.

Oh, they do: make it all up. Your study failed to show benefits? Just say it did and fudge your numbers to fit your conclusions. Attack anyone who says otherwise. Call those who claim to be harmed by it crazy. Insist that you know best, even if the implication is an ability to read minds. It's reliable in the sense that it works. It's near unchallengeable.

The big question through all this is: why? How does an evidence base so mediocre get such an outsized response? It raises all sorts of questions about how much equally awful research there is out there if work of such poor quality can take hold. It's a challenge on the whole of science, how so many can be so gullible and/or careless if they are just enough convinced that it does not really matter because they don't like the targeted population.

 

[rvallee]

This so pisses me off.

How come then, when I had glandular fever and spent 6 months almost entirely in bed, I recovered fully and was very healthy for the next 12 years. According to their theory all that rest should have made me long term sick.

And when I got ME and tried to ignore it and struggled on with working for years I didn't recover, just kept getting sicker.

My experience is the complete reverse of their theories.

And like many I had never even heard of ME (or CFS) until at least 5 years into being ill. Literally never had heard the name, let alone what it is.

Yet so many insist that this an "Internet disease", nevermind that it's been researched since before the Internet even existed. And none of their ideas make any sense with the common relapsing-remitting course. The whole is so fragile just thinking about it too hard makes it collapse under its own weight.

Even when being told by my GP of this disease I did not bother because of the CBT/GET disinformation, it was so completely unlike my experience that I did not think it was a good explanation.

It can't be credible science when people don't care about being shown wrong, do not ever accept any contradiction to their model. There is no clearer sign of pseudoscience than this. They just invent elaborate explanations in their minds and anchor onto them, reject any evidence against because their belief is so tenuous it cannot withstand any bit of criticism, it can only be believed whole.

 

[Cheshire]

Sooo, I listened to another presentation (the masochistic in me...) from Megan McEwen, a kind of physical therapist.

According to the presentation,

Megan is a published author in a range of scientific journals and is also a registered postgraduate student research supervisor at a local tertiary Institute. This position allows her to stay updated with current medical scientific and exercise research which she can academically analyze and put back into her business to help her client

After listening to her, you may slightly disagree...



Her whole lecture was mostly pretentious and patronising. Mainly: "these people (yeah, she keeps repeating that) are very difficult patients to work with, but I'm the best, so I succeed where others don't". Overall, I found her tone distasteful. Nothing of real interest, the usual references to boom-bust patterns, staying in bed following days of activity (very bad) avoidance behaviors or growing illness beliefs...

Nonetheless, here are a few quotes (if you found the previous video upsetting, skip this one).

These people are angry, they're frustrated, they're scared, they feel unheard […] with poorly managed illness beliefs and they lack acceptance of their condition. So these patients are people who believe that “Nobody gets me, (...) I'm different and Something physical is wrong with me and No one is good enough to know what it is

So, is exercising safe for this population? Yes, yes, yes, yes, yes

So, the importance of exercise, it's actually largely in the process. There's so much benefit for the patient in organizing a program and carrying it out, so it provides daily routine, encourages planning, decision making and it gets them socially active.

(that one made me feel like I was a 6 y.o. unable of doing anything on my own, really patronising)

The sooner exercise is part of a treatment plan, the sooner these people will actually be back on their feet

(Lol)

So if you are prescribing exercise, it's important that you build that rapport early and gain their trust and be flexible but consistent with your message. Use exercise from a psychological perspective, so their perspective. Jump in their shoes, find out what floats the boat, so, what they're interested in, give them the most achievable and likely option. Give them the opportunity to come up with the idea. So plant seeds to try and guide them and allow them ownership of the plan

As well, get them exercising without them thinking about it, so, that's walking the kids to school, doing a supermarket run...

Lifestyle change and successful behavior change, it's complex and multifaceted, so expect temporary increases in symptoms. Expect them to be confrontational. Expect barriers, excuses, obstacles, all leading to avoidance. So, there'll be a hundred and one reasons not to follow your suggested plan even if they've come up with the idea themselves. So expect boom-bust patterns and expect for them to hit a wall after a few weeks. And it can take months to progress and for them to perceive any benefit

(If you don't succeed, don't feel guilty, these patients are, well, you know...)

Remember, sometimes,you have to be firm to be kind

And last but not least, closing remark:

If they believe they are better then you have quite simply succeeded

(which is good, because she said earlier in her talk that she doesn't perform a lot of physical measures, because they do not show many changes with "these patients")

 

[Hoopoe]

Re. McMegan: It's all based on PACE and other papers by the same authors who insist that their theory is supported by evidence when it is not. One could say they have a problem with fixed and false beliefs.

The negative feedback by patients is presumably why they are considered especially difficult.

 

[Sid]

There's clearly a concerted global effort to rebrand all these disorders of unknown aetiology under the MUPS/functional umbrella and cart all these patients off to psych. It's a good tactical move now that PACE has been debunked. Instead of continuing to fight on the ME/CFS battlefield where patients and their advocates have had some modest success in pushing back against bad science, they are simply declaring that ME/CFS doesn't exist as a clinical entity. The empire strikes back.

 

[Sid]

For motor disorders, wouldn't it make more sense that the functional disruptions are in parts of the brain involved in motor signalling and feedback? Or parts of the brain involved in afferent feedback, such as the cerebellum and brainstem?

One paper I saw on functional weakness found abnormal activation in DLPFC which is also involved in affective disorders and this was interpreted as proof that emotional state was interfering with normal activation of motor pathways.

 

[DokaGirl]

As @Trish said: "pissed off!"

I worked and exercised for 6 years before diagnosed - all the while getting sicker and sicker. Exercise included: aerobics, running, and walking, all done several times per week.

For over 2 decades with ME, I have tried, and for the most part succeeded to walk about 30 minutes per day. This has not banished the ME.

I'm with @chrisb - the time lag between "childhood trauma" and ME can be decades. There is no proof of any
connection between ME and any long ago childhood trauma.

And, anything goes as a "triggering
trauma".

Really, maybe these people should go into
writing fiction; oh wait, they already are!

Want to get paid even if you're often wrong? Become a weather forecaster, or a
psychiatrist.

I think some in the BPS field dislike a great many people, and see themselves as quite separate and superior. I think the names
used for categories of patients on this video are no better than calling someone an ahole, and other such derogatory terms. It's just name calling in shiny
wrapping paper.

This nonsense about "Your symptoms are real" goes back a long ways. Much further back I would say than my experience of several decades ago with a terrible dental
abscess that my dentist, often smelling of
booze couldn't diagnose. The resulting terrible pain led me to a GP who said "Your pain is real. Could you take a holiday? And, here are some pills to make you feel
better." The pain of course, continued, the
"happy pills" didn't work. A subsequent visit to that same dentist finally sorted out my quest for help, as yes, an abscess was finally confirmed after 3 or 4 weeks of
suffering. These health "care" professionals had me convinced my pain was psychosomatic, until I realized the pills weren't helping and that a re-try with the dentist was in order. However, I should
have gone to another dentist. One who didn't drink alcohol during office hours, and was hopefully more competent.

Regarding consults with health professionals new to me, I have had so many negative experiences now re ME in conjunction with medical attitudes about this disease, that I feel inclined to omit it in discussion. However I am stymied as to what to say if asked, "How is your general health?" I don't want to lie, especially as the info is on my chart - then I will be seen as a liar. Really, pwME are damned if we do and damned if we don't!

ETA: fixed typo - well, there's maybe more than one, but I don't see them, ha!

 

[ME/CFS Skeptic]

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.

Actually, I think he phrases it rather well. He says there are all these papers that show there is an underlying pathology that we just haven't identified yet. So he recognized that the research hasn't identified a pathology, but that it suggests there is one that is limiting what patients can do, for example with regards to exercising and building up activities.

I agree that bringing research articles to your doctor isn't helpful (I haven't found any doctor who would be willing to read them even if they did demonstrate the underlying pathology of ME/CFS). But if you feel your doc doesn't take ME/CFS seriously it might be an option to point him/her to the CDC website or perhaps the IOM-report summary.

 

[rvallee]

Sooo, I listened to another presentation (the masochistic in me...) from Megan McEwen, a kind of physical therapist.

According to the presentation,
After listening to her, you may slightly disagree...



Her whole lecture was mostly pretentious and patronising. Mainly: "these people (yeah, she keeps repeating that) are very difficult patients to work with, but I'm the best, so I succeed where others don't". Overall, I found her tone distasteful. Nothing of real interest, the usual references to boom-bust patterns, staying in bed following days of activity (very bad) avoidance behaviors or growing illness beliefs...

Nonetheless, here are a few quotes (if you found the previous video upsetting, skip this one).




(that one made me feel like I was a 6 y.o. unable of doing anything on my own, really patronising)

(Lol)





(If you don't succeed, don't feel guilty, these patients are, well, you know...)



And last but not least, closing remark:

(which is good, because she said earlier in her talk that she doesn't perform a lot of physical measures, because they do not show many changes with "these patients")

Textbook example of someone who should never, ever, have been allowed to work in anything remotely related to health care. Respectfully: GFY.

 

[DokaGirl]

I think a very good idea @Michiel Tack to supply respected umbrella organization info re ME. For example from the CDC or IOM. I am not trying to put down your suggestion, as I really think it is a good one, one which I have tried a few times. But without much success: one physician would not even touch the IOM Report Brief, which is 4 pages long as we know. I mean literally would not take it from my hand. Another doctor gave me back the CDC info without putting it on my file as I had politely requested. And, another protested, but grudgingly accepted other government
info. I do think government summary info re the biomedical nature of ME is a good thing to give physicians, but it's not really welcomed either.

I would agree studies are not great to pass along, as even in the ME field, there will be more coming down the pike soon, and one's doctor may not want to see a stream, or even a trickle of these every year.

A friend did make me wonder if the receptiveness to medical info is a gender thing - the patient's gender. This friend, a fellow, hears no complaints when he brings his doctor info.

ETA: the info our friend takes his doctor is not about ME; it's about another disease that is not as stigmatized as ME, but is rather unknown.

 

[Sean]

If they believe they are better then you have quite simply succeeded.

 

[alex3619]

It takes a supreme level of incompetence to keep going this way after so many hard lessons.

You are too kind. I would go with extreme level of stupid.

 

[alex3619]

we have no understanding of the underlying pathophysiological processes

I don't think this is valid any more, it was a decade ago though. The problem is we know tons of things, like 2500 biomarkers, clearly showing pathophysiology, but we do not know which are primary, secondary, or false positives, or which are the most critical. So we have a long way to go. But pathophysiology can be established using only 1949 technology, CPET.