CBT combined with music therapy for chronic fatigue following Epstein-Barr virus infection in adolescents: a feasibility study, 2020, Wyller et al

[Kalliope]

I attended a lecture by Wyller last November and just went through my notes.
This passage might touch upon the study. (Hastily translated)

They've suggested a complex model for fatigue. They are trying to form, from what is known empirically, a whole where personality, infections and life events, all this leads to a jammed alarm system. That the fatigue alarm is activated in a chronic and unsuitable way.
This gives symptoms, which will be modified by sociocultural, cognitive, emotional factors. It will also give a bodily stress response, sustained arousal, a continuous stress activation of the body which again leads to other things typical for these conditions. It leads to cognitive changes, autonomic changes, hormonal changes and actually also a low grade infection. They belive infection is more an effect than cause in this connection.

 

[Midnattsol]

I attended a lecture by Wyller last November and just went through my notes.
This passage might touch upon the study. (Hastily translated)

They've suggested a complex model for fatigue. They are trying to form, from what is known empirically, a whole where personality, infections and life events, all this leads to a jammed alarm system. That the fatigue alarm is activated in a chronic and unsuitable way.
This gives symptoms, which will be modified by sociocultural, cognitive, emotional factors. It will also give a bodily stress response, sustained arousal, a continuous stress activation of the body which again leads to other things typical for these conditions. It leads to cognitive changes, autonomic changes, hormonal changes and actually also a low grade infection. They belive infection is more an effect than cause in this connection.

If only there was a study that had tried to stop this "sustained arousal" and showed it didn't matter. Oh, wait.. https://www.healthrising.org/blog/2...onidine-trial-chronic-fatigue-syndrome-fails/

 

[Kalliope]

I attended a lecture by Wyller last November and just went through my notes.
This passage might touch upon the study. (Hastily translated)

They've suggested a complex model for fatigue. They are trying to form, from what is known empirically, a whole where personality, infections and life events, all this leads to a jammed alarm system. That the fatigue alarm is activated in a chronic and unsuitable way.
This gives symptoms, which will be modified by sociocultural, cognitive, emotional factors. It will also give a bodily stress response, sustained arousal, a continuous stress activation of the body which again leads to other things typical for these conditions. It leads to cognitive changes, autonomic changes, hormonal changes and actually also a low grade infection. They belive infection is more an effect than cause in this connection.

A bit off thread, but when reading further in my notes I'd like to add something he said about Lightning Process, as it might help us understand why he believes it's worth further investigation.

This was from the question round (hastily translated)

It's a challenge that any exertion to them will naturally activate their fatigue. If this has gotten jammed, as an alarm, then it's exactly what the alarm will tell the patient, that you need to slow down.
If you put a finger into the flame of a candle light, then the pain will command you to remove the finger. If you as fatigued try to push yourself, then the fatigue will just intensify. Because that's the point of the alarm.
Some of the reason behind why I believe Lightning Process sometimes is very effective, is that they make patients experience that they can do something without getting exhausted afterwards. It's a pure learning-psychological effect in that you are tricked a bit into doing an activity and experience it as positive. And suddenly you're not thinking that you're not really able to do it because you have so strong negative expectations that you won't be able to make it. But then you are able to after all. And then you've learnt something different. At least it's a kind of answer to it.

 

[Hoopoe]

Some of the reason behind why I believe Lightning Process sometimes is very effective, is that they make patients experience that they can do something without getting exhausted afterwards. It's a pure learning-psychological effect in that you are tricked a bit into doing an activity and experience it as positive. And suddenly you're not thinking that you're not really able to do it because you have so strong negative expectations that you won't be able to make it.

In my experience positive mood can counteract fatigue but the problem is not initiating activities but the crash afterwards and sustaining them over a longer time. The people promoting psychological solutions seem to be unable to understand that the usual psychological factors they cite aren't what's holding people back.

The crash will demonstrate to the patient that positive mood, high motivation and so on are not a solution and the problem isn't with these aspects.

I also experience periods where I'm less ill and begin to do more, become excited about being able to do more and try to rebuild my life a little. I don't need a therapist to give a positive input to my life because that happens on its own. It just doesn't matter how positive and motivated and skilled in rebuilding your life you are. Normal activity levels are impossible and the relapse will come. That is presumably what patients generally mean when they say it's a physical illness but we aren't being listened to.

 

[Midnattsol]

A bit off thread, but when reading further in my notes I'd like to add something he said about Lightning Process, as it might help us understand why he believes it's worth further investigation.

This was from the question round (hastily translated)

It's a challenge that any exertion to them will naturally activate their fatigue. If this has gotten jammed, as an alarm, then it's exactly what the alarm will tell the patient, that you need to slow down.
If you put a finger into the flame of a candle light, then the pain will command you to remove the finger. If you as fatigued try to push yourself, then the fatigue will just intensify. Because that's the point of the alarm.
Some of the reason behind why I believe Lightning Process sometimes is very effective, is that they make patients experience that they can do something without getting exhausted afterwards. It's a pure learning-psychological effect in that you are tricked a bit into doing an activity and experience it as positive. And suddenly you're not thinking that you're not really able to do it because you have so strong negative expectations that you won't be able to make it. But then you are able to after all. And then you've learnt something different. At least it's a kind of answer to it.

Which by all means would be fair to believe, if it hadn't been for all the patients saying it's not so.

Normally I am able to go grocery shopping by myself, the days I feel I'm not able I can try to push it - sometimes I get to the store (then there's the problem that I might not be able to take anything home with me.. even in a trolley), sometimes I cannot even manage to get out the door of the apartment. When my body is telling me I should not do something, that is usually followed by a crash if I don't listen. When I feel fine I feel fine and am able to do stuff, that I shouldn't do it doesn't register. I have experienced, again and again, that being able to do something one day does not mean I can do it another. It has nothing to do with me being "scared" of doing it. If it's something I want to do I'll get around to it when I feel better.

Edit: For context, for a healthy human it takes about two minutes to go to the shops from where I live. Sometimes I can manage it in the same amount of time, I can also use waaay more time because I shuffle along at the speed of someone three times my age in frail health.

 

[Kalliope]

Which by all means would be fair to believe, if it hadn't been for all the patients saying it's not so.

Normally I am able to go grocery shopping by myself, the days I feel I'm not able I can try to push it - sometimes I get to the store (then there's the problem that I might not be able to take anything home with me.. even in a trolley), sometimes I cannot even manage to get out the door of the apartment. When my body is telling me I should not do something, that is usually followed by a crash if I don't listen. When I feel fine I feel fine and am able to do stuff, that I shouldn't do it doesn't register. I have experienced, again and again, that being able to do something one day does not mean I can do it another. It has nothing to do with me being "scared" of doing it. If it's something I want to do I'll get around to it when I feel better.

Yes exactly. And how does he explain symptom exacerbation from happiness by receiving good news? Where's the negative expectations there?

I'm not scared of activity. I love being in activity. And have learned from experience that by not pushing I can do even more of them.

 

[Amw66]

In my experience positive mood can counteract fatigue but the problem is not initiating activities but the crash afterwards and sustaining them over a longer time. The people promoting psychological solutions seem to be unable to understand that the usual psychological factors they cite aren't what's holding people back.

The crash will demonstrate to the patient that positive mood, high motivation and so on are not a solution and the problem isn't with these aspects.

I also experience periods where I'm less ill and begin to do more, become excited about being able to do more and try to rebuild my life a little. I don't need a therapist to give a positive input to my life because that happens on its own. It just doesn't matter how positive and motivated and skilled in rebuilding your life you are. Normal activity levels are impossible and the relapse will come. That is presumably what patients generally mean when they say it's a physical illness but we aren't being listened to.

This

 

[Snow Leopard]

It's a challenge that any exertion to them will naturally activate their fatigue. If this has gotten jammed, as an alarm, then it's exactly what the alarm will tell the patient, that you need to slow down.

Interesting that he believes that.

Fatigue is not an alarm signal.

This has got to be one of the most common myths of all and professionals who continue to believe this, clearly they are not critical thinkers.

Severe pain is the alarm signal. There is no need for any other.

Some of the reason behind why I believe Lightning Process sometimes is very effective, is that they make patients experience that they can do something without getting exhausted afterwards. It's a pure learning-psychological effect in that you are tricked a bit into doing an activity and experience it as positive. And suddenly you're not thinking that you're not really able to do it because you have so strong negative expectations that you won't be able to make it. But then you are able to after all. And then you've learnt something different. At least it's a kind of answer to it.

So it is clear he does not believe what patients are telling him about their experiences. He believes they can do more than they say and are simply avoiding activity due to catastrophisation!

He needs to learn that his denial of the truth of our experiences is exactly why we don't trust him!

 

[rvallee]

They're trying to prove that immune dysregulations in ME are not clinically relevant. I cannot understand why they would want to identify things that don't matter? Is their goal to disprove that ME is organic, but is instead psychological/somatic?

You know it.

 

[rvallee]

I attended a lecture by Wyller last November and just went through my notes.
This passage might touch upon the study. (Hastily translated)

They've suggested a complex model for fatigue. They are trying to form, from what is known empirically, a whole where personality, infections and life events, all this leads to a jammed alarm system. That the fatigue alarm is activated in a chronic and unsuitable way.
This gives symptoms, which will be modified by sociocultural, cognitive, emotional factors. It will also give a bodily stress response, sustained arousal, a continuous stress activation of the body which again leads to other things typical for these conditions. It leads to cognitive changes, autonomic changes, hormonal changes and actually also a low grade infection. They belive infection is more an effect than cause in this connection.

Rube Goldberg's blunt mace of bluntness is a terrible choice over Occam's razor.

Why are the ignorant personal opinion of people clearly way out of their league being given credibility? These people don't know their ass from a hole in the ground.

 

[cassava7]

I attended a lecture by Wyller last November and just went through my notes.
This passage might touch upon the study. (Hastily translated)

They've suggested a complex model for fatigue. They are trying to form, from what is known empirically, a whole where personality, infections and life events, all this leads to a jammed alarm system. That the fatigue alarm is activated in a chronic and unsuitable way.
[...] They belive infection is more an effect than cause in this connection.

Ah. Maybe our bodies want revenge on us for the normal and (hopefully for the most of us) happy, healthy, active lives that we had before coming down with ME!

Thanks for these notes @Kalliope. Their wild psychosocial claims on completely unrelated biomedical factors is just... a striking denial of proper science. I don't think they could be gaslighting ME patients more openly than they are. Wow.

 

[spinoza577]

In my experience positive mood can counteract fatigue but the problem is not initiating activities but the crash afterwards and sustaining them over a longer time.

In my experience not my mood but my ability to engage can slow down and even suddenly disrupt, but this is an operative inability, not a motivational one.

If we compare this with depression, then, although it is easily thinkable that depression has an organic cause, we see that depression is an motivational inability.

The people promoting psychological solutions seem to be unable to understand that the usual psychological factors they cite aren't what's holding people back.

If one wants to try to establish a psychological explanation - under the prerequisite to take patients seriously - one would need to come up with a theory that shows which hidden mental properties could cause a non-mental, operative inability.

But this leads again and again to the assumption that some unconscious basis is not right, and with "unconscious" we are already again in the realm of motivation, some background fear or whatever.

Wouldn´t it be better to look at viruses, and what they might do, which may lead under circumstances to such a catastrophe? Wouldn´t it be better - for example - to imagine what in the brain could go wrong?

Isn´t it a confession of a stupidness not to be able or not wanting to interpret any biological mechanisms? There is already quite a richdom with maybe already hundreds of possibilities, but again and again the same annoying and boring attempts on patient´s minds which seem to be inhuman.

 

[Snowdrop]

It's a challenge that any exertion to them will naturally activate their fatigue. If this has gotten jammed, as an alarm, then it's exactly what the alarm will tell the patient, that you need to slow down.
If you put a finger into the flame of a candle light, then the pain will command you to remove the finger. If you as fatigued try to push yourself, then the fatigue will just intensify. Because that's the point of the alarm.

But this isn't what happens. Aside from the fact that people get many neurological symptoms after exertion they also do not experience the type of response as in the finger to the flame.

It's not immediate and it varies greatly as to the level of exertion needed.

This analogy is simply just a wrong analogy.

 

[spinoza577]

... all this leads to a jammed alarm system. That the fatigue alarm is activated in a chronic and unsuitable way.

This gives symptoms, which ...

It's a challenge that any exertion to them will naturally activate their fatigue. If this has gotten jammed, as an alarm, then it's exactly what the alarm will tell the patient, that you need to slow down.
If you put a finger into the flame of a candle light, then the pain ...

I think the attempt is comparable not too bad, but it´s not "exactly" what happens. It´s mere an allegory, and therefore the analogy cannot be exact, and may be misleading ...

I think one should ask, what would nature have taken by chance to evolve an "alarm", which later could generate in some beings to a fatique? How could it function, where in the brain could it be found? How could one feel strong, or laughing, how could one feel weak, how could one feel astonished, how could one not be able to process music?

The fatique is not "activated" by exertion, but the whole being in the world has changed, every moment is misery even when you are really laughing.

On the side of receiving, which is naturally pure activity, there must be something wrong, on a very basic level.

 

[Mithriel]

But this isn't what happens. Aside from the fact that people get many neurological symptoms after exertion they also do not experience the type of response as in the finger to the flame.

It's not immediate and it varies greatly as to the level of exertion needed.

This analogy is simply just a wrong analogy.

Exactly. Like many others, I can do something, enjoy it, feel fine for the next 2 days then wham, can't get out of bed on the 3rd day (or the 4th, 5th and 6th either!)

It isn't deconditioning either because people are fit then get a virus then never get better. It takes weeks to become deconditioned for anyone and some people manage to stay fairly fit, if sedentary.

It's not depression because patients know what they want to do their bodies just won't let them and many people get PEM because they overdo things that are fun.

They do not do the simplest test other theory, seeing how well it fits the facts.

 

[Jonathan Edwards]

1. … regarding B cell function:

a. CFS/ME is characterised by attenuated B cell differentiation and stimulation responses.

b. Functional alterations of B cells are driven by autonomic/neuroendocrine alterations.

c. Functional alterations of B cells do not cause clinical symptoms and functional disability.

2. … regarding inflammation:

a. CFS/ME is characterised by general low-grade inflammation.

b. Inflammation enhancement is driven by autonomic/neuroendocrine alterations.

c. Inflammation does not cause clinical symptoms and functional disability.




It seems reminiscent of Plandemic - it is all a real hoax!

 

[Kalliope]

Trial By Error by David Tuller: My Letter to Peer Reviewer of BMJ's CBT-Music Therapy Paper

BMJ Paediatrics Open features an open–that is, non-anonymous–peer review process. Continuing my efforts to understand how a fully powered randomized trial that failed to meet expectations was published as if it had always been intended as a feasibility study undertaken to generate support for a fully powered randomized trial, I have sent the following letter to the one of the two peer reviewers who actually read the paper. (One of them announced bluntly that he had not read “beyond the abstract.)

Dr Maria Loades is a lecturer in the psychology department at the University of Bath. I sent her the following letter this morning.

https://www.virology.ws/2020/05/28/...EWEJBboTpMTnPyaKdQSlTc8-aigZ0AtlJ5b7Cjc-tD2Qk

 

[Kalliope]

Excellent comment to the study at PubPeer by Michiel Tack! Contains an analysis where five problems with the study are identified and concludes:

In conclusion, CBT combined with music therapy was associated with a high drop-out rate and lower activity levels than participants who received no intervention. Contrary to what Malik et al. conclude these results question whether a full-scale clinical trial is justified.

https://pubpeer.com/publications/5B...oL3YyERWSFMTvc66c-ciMEFx3Gw4Ns7809sAJF0I0SLtY

 

[Kalliope]

Excellent comment to the study at PubPeer by Michiel Tack! Contains an analysis where five problems with the study are identified and concludes:

In conclusion, CBT combined with music therapy was associated with a high drop-out rate and lower activity levels than participants who received no intervention. Contrary to what Malik et al. conclude these results question whether a full-scale clinical trial is justified.

https://pubpeer.com/publications/5B...oL3YyERWSFMTvc66c-ciMEFx3Gw4Ns7809sAJF0I0SLtY

Reposted at virology blog by David Tuller

Trial by Error: Tack's Take on BMJ's CBT-Music Therapy "Feasibility Study"
I have always made it clear that I pay attention when smart patients assess bad research. That’s how I stumbled into this whole mess in the first place–by reading what patients were writing about the PACE trial. (In that case, I at first dismissed the concerns when I read about how participants could get worse and still be counted as recovered. I figured patients must have it wrong. I knew no credible journal could have published such a study–much less failed to retract it when the problem had been pointed out.)

One of the smart patients whose analyses I pay attention to is Michiel Tack.

 

[MSEsperanza]

Excellent comment to the study at PubPeer by Michiel Tack! Contains an analysis where five problems with the study are identified and concludes:

In conclusion, CBT combined with music therapy was associated with a high drop-out rate and lower activity levels than participants who received no intervention. Contrary to what Malik et al. conclude these results question whether a full-scale clinical trial is justified.

https://pubpeer.com/publications/5B...oL3YyERWSFMTvc66c-ciMEFx3Gw4Ns7809sAJF0I0SLtY

The BMJ Paediatrics Open has now published it, too: https://bmjpaedsopen.bmj.com/content/4/1/e000620.responses

Thank you @Michiel Tack for another brilliant piece.

It also got a nice title on David's blog post. There's rhythm in it...