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

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.

 

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.

 

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?

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

 

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.

 

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.

 

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.

 

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.

 

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.

 

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.

 

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.

 

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.

 

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.

 

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!

 

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.

 

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

 

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.

 

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

 

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.