Efficacy of cognitive behavioral therapy targeting severe fatigue following COVID-19: results of a randomized controlled trial 2023, Kuut, Knoop et al

Sean said:
They really are a protected species. I am not feeling any sense of general interest or urgency in medicine and politics to deal with this appalling problem promptly and effectively.
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I keep seeing regular mentions in non-LC forums about chronic illness, say POTS, who were dismissed just as insultingly as before but had the privilege of hearing some MD rant about how those fashionable diagnoses are out of control recently. And they are completely unable to make the connection to COVID because they aren't told about it from the top of their information channels, which is clearly the only way information spreads in the profession. The vast majority are completely oblivious to it all, it clearly annoys them more than anything.

The medical profession is basically 99% willing to chalk this all up to lockdowns, TikTok, or whatever. There has been exactly zero progress made because of this, they straight up refuse to acknowledge what they see, because they aren't correctly told what they should be looking at. Truly one of the most epic failures in history, the kind that normally only happens in politics. Which more than anything makes the point that medicine is almost all about politics.
 
rvallee said:
Long Covid has made it very clear that the underlying incompetence and failure of reasoning is evenly distributed in the profession. At best 1% can see through it,
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After seeing the NIH waste billions on long covid, and most of the European countries doing nothing (as they have always done), it is pretty clear now.

For decades there was this narrative that ME was this illness that just so happened to be stuck in this weird place, a strange set of coincidences if you will, and all you needed was a catalyst to change things - if the money comes in, we will have quality research, they said, it's simply a funding problem. Or maybe people simply need to know the illness exists, it is a visibility problem, etc...

In the past 3 years we have had all the possible catalysts, billions in funding, a global pandemic, almost everyone has heard of long covid at least once, and yet nothing has changed. The lack of accountability in medicine is so extreme that all this couldn't even put a dent.
 
rvallee said:
POTS, who were dismissed just as insultingly as before but had the privilege of hearing some MD rant about how those fashionable diagnoses are out of control recently. And they are completely unable to make the connection to COVID
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What makes that behavior so appalling to me, isn't so much the prejudice and hate expressed by those doctors, but the fact that they are pointing fingers at a miniscule group of patients on social media who like to "showcase" their illness and effectively claiming, from a position of authority, that they represent everyone with said illness, saying "look, that's the proof it's a psychosomatic illness".

How many people are even making social media accounts on tiktok just to talk in the open about their POTS? Probably 1 out of 10000, if even that. It's not a common phenomenon at all, it's actually very rare for obvious reasons. But according to doctors, it's "the new trend". Why don't you show me some numbers to prove your point? If you told a social media marketing specialist that POTS is the new TikTok trend they would laugh at your face and ask you what that "pots" even is.

I bet there are more people on social media talking about their autism, depression or multiple sclerosis, and those people are actually ENCOURAGED by their doctors to be open about their illness! How can they not see this blatant contradiction? The more i learn about medicine, the more it looks like a cult. There is absolutely no regard for scientific or critical thinking.
 
Hubris said:
What makes that behavior so appalling to me, isn't so much the prejudice and hate expressed by those doctors, but the fact that they are pointing fingers at a miniscule group of patients on social media who like to "showcase" their illness and effectively claiming, from a position of authority, that they represent everyone with said illness, saying "look, that's the proof it's a psychosomatic illness".

How many people are even making social media accounts on tiktok just to talk in the open about their POTS? Probably 1 out of 10000, if even that. It's not a common phenomenon at all, it's actually very rare for obvious reasons. But according to doctors, it's "the new trend". Why don't you show me some numbers to prove your point? If you told a social media marketing specialist that POTS is the new TikTok trend they would laugh at your face and ask you what that "pots" even is.

I bet there are more people on social media talking about their autism, depression or multiple sclerosis, and those people are actually ENCOURAGED by their doctors to be open about their illness! How can they not see this blatant contradiction? The more i learn about medicine, the more it looks like a cult. There is absolutely no regard for scientific or critical thinking.
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sadly I think whether there were patients doing it or not and whether their content was dry, scientific and helpful or something else there would still be these claims and suggestions made by said people. It’s misogyny the same misogyny that says girls end up think because the internet or magazines tell them to and they are so influenceabld and silly - there can never be awful situations and illness and bullying for certain demographics from certain types of people, just these nasty assumptions.

I think this is worth underlining as a behaviour issue and delusion that is well-worn from said individuals in the profession and no t from whichever people are being picked on with these tropes. So it can start being called out for what it is.
 
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Previously in this thread, I questioned the extent to which this would be publicized. Using Twitter as a barometer, which I realize is unrepresentative, it hasn’t gained significant traction yet. The typical purveyors of this ideology: Gaffney, Carson, etc are euphoric about the findings, but that’s predictable.
 
Explanation by Rovers why the actometer data wasn't used....

"This was not chosen because reduced physical activity is not a good marker of fatigue. There are many people with serious complaints in post-infectious syndromes that do not deviate in terms of movement, and also many healthy inactive people without fatigue or limitations."



Answer:

"Possible, but you also use a secondary measure of improved physical functioning. It could therefore be tested with the aid of an actometer. This is now purely on the basis of subjective outcome measures. Even then it would have been important to publish it, outcome is now weak."
 
Grigor said:
"This was not chosen because reduced physical activity is not a good marker of fatigue. There are many people with serious complaints in post-infectious syndromes that do not deviate in terms of movement, and also many healthy inactive people without fatigue or limitations."
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"We don't think your fatigue is real, so your activity level doesn't actually matter to us"

Imagine telling a brain cancer patient there's no need to do the MRI because it's not an accurate marker of the feeling of having brain cancer. That's what they are doing here. Some people can feel like they have brain cancer even if they don't, and some can have it and not feel it, so there's no need to measure anything.
 
Charles B. said:
Previously in this thread, I questioned the extent to which this would be publicized. Using Twitter as a barometer, which I realize is unrepresentative, it hasn’t gained significant traction yet. The typical purveyors of this ideology: Gaffney, Carson, etc are euphoric about the findings, but that’s predictable.
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I have Google alerts for most of this stuff, and saw maybe 5-7 articles on the day of publication and that's about it. For English language anyway, I assume it's being hyped a lot in The Netherlands. But otherwise yeah it's pretty much the same dozen or so people. Literally just a few dozens.

But of course most of the hype will probably happen within the medical community and we won't see any of that.
 
Grigor said:
Explanation by Rovers why the actometer data wasn't used....

"This was not chosen because reduced physical activity is not a good marker of fatigue. There are many people with serious complaints in post-infectious syndromes that do not deviate in terms of movement, and also many healthy inactive people without fatigue or limitations."



Answer:

"Possible, but you also use a secondary measure of improved physical functioning. It could therefore be tested with the aid of an actometer. This is now purely on the basis of subjective outcome measures. Even then it would have been important to publish it, outcome is now weak."
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This is an extremely disingenuous excuse. If they had had good results you can be 1000% certain that they would have hyped this as undeniable objective proof. We know this. They know this. We can pretend, but of course this is nothing but a cheap BS excuse.

It shows how this entire discipline is nothing but cherry-picking and arguing their own ideas. They don't even trust their own research, so much that they will avoid doing something that gives actual results.
 
Grigor said:
Explanation by Rovers why the actometer data wasn't used....

"This was not chosen because reduced physical activity is not a good marker of fatigue. There are many people with serious complaints in post-infectious syndromes that do not deviate in terms of movement, and also many healthy inactive people without fatigue or limitations."



Answer:

"Possible, but you also use a secondary measure of improved physical functioning. It could therefore be tested with the aid of an actometer. This is now purely on the basis of subjective outcome measures. Even then it would have been important to publish it, outcome is now weak."
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https://www.s4me.info/threads/the-p...-reduction-in-fatigue-2013-knoop-et-al.24643/

I note this one which is actually Heins et al (2013) but has Knoop involved, and you can scroll down to see they actually reported 'objective activity' and 'perceived activity'

There are some interesting points for discussion here regarding just 'having actimeters' isn't enough of a condition without some common sense in how they are used - particularly re: the sample-size, length of time, methods used (as you say whether people's quality of movement is measured alongside the how much if they are still having to do essential tasks even when really poorly) but also the up-regulation and can't even get to the rest bit that can quite often happen when you've really overdone it etc.

However, there is also the likelihood that certainly if it was properly longitudinal, say 12months - which is what is really needed for ME/CFS because it is the not being able to recover from PEM, or being 'at threshold' too much that eventually makes for a permanent or long-term going downhill e.g. you push through just about riding your limits at work for 6mnths then end up in a massive lowered threshold and ability at that point/relapse.

But on the other hand, given I'm not sure whether these individuals used and reported on actimeters data after this - despite it seems quite common for it to be collected but not reported to participants etc - there are interesting questions as to why this non-reporting whilst still collecting it seems to be the norm.

Either it is inaccurate enough that you do something to make it more accurate one day given it has been a decade since this one, or you stop using it because it is next to useless surely - I find it intriguing they keep wanting to have it in there?
 
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I expect, based on what I’ve seen on social media, that we will see an article praising this soon. Jeff Wise, who wrote the NY Mag piece sycophantically echoing BPS propaganda, seemed dismayed by the dearth of coverage for the trial. Again, pure speculation, but I think it’s worth putting on everyone’s radar.
 
strategist said:
It's impossible to have serious fatigue and not have reduced activity levels. The BPS people are telling nonsense again.
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Yes, but I think from the BPS point of view, patients are lying about their fatigue health because they are lazy, drug-seeking, attention-seeking hypochondriacs. A lot of doctors have similar points of view about women talking about their pelvic pain and their periods.

Edit : Changed the word "fatigue" to "health" because I don't like the word fatigue.
 
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Arvo said:
So I was collecting everywhere where it was clear that this was originally supposed to be about prevention (FOI files, ZonMw page, project recruitment page). There's much to find in the FOI docs (link here). I really encourage people so inclined to look through them. There's dutch content, but the project plan and the grant request with elaborated plan are in english and contain a lot of relevant info.
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The protocol was changed from recruiting people within 6 months of illness onset to, I think, 12 months. I assumed that this was because they were having difficulty recruiting people. Not getting access to a whole lot of newly ill people would rather stymie any effort to prevent LC.
 
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