Norwegian trial: Mental training for CFS/ME following EBV infection

[Kalliope]

The Norwegian blogger ToTo NeuroImmunologisk Kurativ Behandling has written about a trial on CBT and music therapy on young people with fatigue after an EBV infection. The blog post is translated to English and contains the research protocol. The principal investigator of the study is MD PhD Vegard Bruun Wyller at Akershus University Hospital.

 

[sarah darwins]

I scanned through it. Lots of references to Chalder. And Crawley, White, Sharpe, Wessely all putting in appearances. Plenty of questionnaires and 'qualitative interviews'. And on it goes ...

 

[A.B.]

Shocking that these projects are funded. As patient I don't want any money to be wasted on this closet freudian nonsense.

Several lines of research support the investigation of affect consciousness in CFS patients: First, those with particularly low affect consciousness have a tendency to focus on somatic sensations that accompany emotional activation and to misinterpret these as signs of illness (Taylor 2004). Individuals with low affect consciousness are therefore considered vulnerable to incorrectly attribute innocent bodily sensations to physical disease, for which subsequently no medical explanation can be found (Kooiman 2004).

There's more of this sort of stuff. Basically the idea is that patients interpret emotional problems as physical illness.

The authors also write that the effectiveness of CBT and GET is well documented (citing PACE). What a joke. It does nothing on objective measures! The literature seems to only document the placebo effect in action, then calling it treatment effect.

I think it is unethical that money is spent on discredited crackpot ideas with no concrete proof behind them.

 

[sarah darwins]

Basically the idea is that patients interpret emotional problems as physical illness.

And music therapy will fix them. Great, isn't it.

 

[A.B.]

And music therapy will fix them. Great, isn't it.

It will also be explained to these adolescents that they aren't really ill, but just misinterpreting ordinary sensations produced by emotional troubles as signs of illness. What could possibly go wrong?

On a more serious note this sounds more like mental abuse to me.

 

[alex3619]

I wonder if they will get to the point of using these therapies on morgues and funeral homes. You aren't really dead, you are just misinterpreting your symptoms.

 

[user9876]

I wonder if they will get to the point of using these therapies on morgues and funeral homes. You aren't really dead, you are just misinterpreting your symptoms.

They might conclude that if you stop thinking you die and have treatments to keep people thinking.

 

[A.B.]

They might conclude that if you stop thinking you die and have treatments to keep people thinking.

A while ago a study came out that claimed negative attitudes towards aging causes Alzheimer's disease. Maybe "negative attitude towards death causes premature death" is next?

It's going to be easy to find negative attitudes towards death, and probably also show some correlation with premature death. People whose family members die early (especially due to some terrible illness) are probably going to hold what can be interpreted as negative attitudes towards death, and will also be at risk themselves for dying earlier. And in the world of psychosomatic medicine, interpreting correlation as sure sign of causation is the norm.

 

[Large Donner]

Its obvious that this trial will be declared a success. They will simply broadly pick from people who have had EBV recently, tell them they have ME or CFS, play them some music give them some CBT and hey presto six months later they wont have fatigue.

No control group necessary. Easy to find kids who have just had EBV even easier to find kids who don't have ME following EBV.

 

[TiredSam]

I wonder if they will get to the point of using these therapies on morgues and funeral homes. You aren't really dead, you are just misinterpreting your symptoms.

I've been to a few funerals where music was played, but at none of them did the dead get up and walk again. I appreciate that this evidence is only anecdotal.

 

[jimells]

And when these young people "refuse" to recover in six months they will be diagnosed with "Pervasive Refusal Syndrome" and declared free of "CFS".

 

[Large Donner]

Who is going to be responsible for choosing the play list for a bunch of teenagers I wonder. Is it going to be all cringy like when politicians are asked what their favorite bands are and they pretend to be all hip.

I bet its going to Esther Crawley and she uses words like "groovy and poptastic", shes really in tune with kids right? ....cos she is a pediatrician.

Is there going to be a "discotheque and tape cassettes"?

 

[Esther12]

That does look pretty shit.

If they're using fMRI as an outcome measure, that's novel... but also likely to leave them a lot of room to claim a positive outcome. Rather doubt that their going to pre-specify what would be needed to claims a clinically significant difference there.

 

[Seven7]

In my opinion every single ME association should demand at least an inform consent that GET can make them worse and look for the well being of teens. They have hope still.

I would live by I would sit outside and protest.

 

[worldbackwards]

Well, I for one welcome our new Norwegian musical overlords...

 

[sarah darwins]

That does look pretty shit.

Excellent summary, m'lady.

 

[Marky90]

I read about this yesterday, and I`m shocked. I am however, not surprised. Vegard Wyller produced a paper some years ago, claiming that his "theory" about the sustained stress arousal-model, explains EVERYTHING. He believes it to be the answer of ME. Such a modest man. What is it exactly? Well that`s a bit hard to prove, but he tries to convince itself it has a biological basis by referencing a lot of nonsense in his articles. He especially likes the paper that "proved" ME-patiens often are perfectionists bla bla bla..

He never mentions the other research done on ME. He speaks a lot of dillydally about the downfalls of seperating between the body and the mind, but he`s a hypocrite in that context, because quite obviously he don`t understand that the body can have it`s own effect as in all other normal diseases.

I have tried to understand this guy, but I dont. I think it`s another case of a researcher being caught up his own arse. It`s not important to be right, it`s important not to be proven wrong about your theory, and if somebody proves you wrong: Write another article, referncing some pseudo papers with subjective outcomes of effect, and claim that CBT has an effect on ME.

How does this get funded? It`s disgraceful. What else can we say? We are really really sick, and the government funds this lunacy. Do they fund studies on musical therapy for ALS, Alzheimers, or Parkinsons? We don*t understand the disase process for those either, but the disease is more apparant..Maybe that`s why.

And this has been our problem all these years, we don`t look sick, we don`t act sick. Only the severely ill does, and who takes care of them? Who does research on them? No one. Only family, or friends.

Personally I am so fed up. I will use the rest of my life writing about these quacks, and trying to get the norwegian media to write about it.

We will win in the end.
Because science breeds knowledge, opinion breeds ignorance*.

 

[Aurator]

That does look pretty shit.

And of the humongous pachydermatous variety, judging by the excerpt below:

"To achieve better outcomes and facilitate recovery in CFS/ME, other mechanisms have been identified that may play a role in both development and maintenance of the disorder. One such mechanism is reduced affect consciousness, referring to the ability to adequately perceive, tolerate, reflect upon and express (verbally and nonverbally) discrete emotions (Solbakken, Hansen, Havik 2011). Furthermore it reflects the ability to both access and use emotions as signals, utilizing the adaptive properties of affects for personal adjustment (Solbakken, Hansen, Monsen 2011).
Several lines of research support the investigation of affect consciousness in CFS patients: First, those with particularly low affect consciousness have a tendency to focus on somatic sensations that accompany emotional activation and to misinterpret these as signs of illness (Taylor 2004). Individuals with low affect consciousness are therefore considered vulnerable to incorrectly attribute innocent bodily sensations to physical disease, for which subsequently no medical explanation can be found (Kooiman 2004). This is in line with a number of studies reporting that CFS patients have a tendency to interpret bodily sensations as sign of physical disease (Dendy 2001). For example 86% of patients with fatigue syndrome attributed their fatigue to physical factors in one study (Wessely 1989). CFS patients are also shown to be more prone to attribute bodily sensations to illness and less likely to interpret these symptoms in terms of negative emotion, compared to both healthy adults and patients with multiple sclerosis (MS) (Dendy 2001)."

I have tried to understand this guy, but I dont. I think it`s another case of a researcher being caught up his own arse. It`s not important to be right, it`s important not to be proven wrong about your theory, and if somebody proves you wrong: Write another article, referncing some pseudo papers with subjective outcomes of effect, and claim that CBT has an effect on ME.

How this get funded? It`s disgraceful. What else can we say?

I think we've all said more than this study deserves saying about it. We should have left the floor to @SilverbladeTE from the outset, who would have summed it all up nicely in his inimitable style.

 

[A.B.]

For example 86% of patients with fatigue syndrome attributed their fatigue to physical factors in one study (Wessely 1989).

Clearly the belief that the symptoms are due to a disease is a sure sign of mental illness.

FS patients are also shown to be more prone to attribute bodily sensations to illness and less likely to interpret these symptoms in terms of negative emotion, compared to both healthy adults and patients with multiple sclerosis (MS) (Dendy 2001)

That might have something to do with CFS patients often being told that it's some hidden psychological problem. Healthy adults and MS patients don't have to deal with this crap (at least not as often).

If these studies are even reporting real effects. Can't be bothered to check, but a lot of studies are junk science where the data is twisted, turned and manipulated until it fits the desired conclusion.

 

[TiredSam]

And of the humongous pachydermatous variety, judging by the excerpt below:

"To achieve better outcomes and facilitate recovery in CFS/ME, other mechanisms have been identified that may play a role in both development and maintenance of the disorder. One such mechanism is reduced affect consciousness, referring to the ability to adequately perceive, tolerate, reflect upon and express (verbally and nonverbally) discrete emotions (Solbakken, Hansen, Havik 2011). Furthermore it reflects the ability to both access and use emotions as signals, utilizing the adaptive properties of affects for personal adjustment (Solbakken, Hansen, Monsen 2011).
Several lines of research support the investigation of affect consciousness in CFS patients: First, those with particularly low affect consciousness have a tendency to focus on somatic sensations that accompany emotional activation and to misinterpret these as signs of illness (Taylor 2004). Individuals with low affect consciousness are therefore considered vulnerable to incorrectly attribute innocent bodily sensations to physical disease, for which subsequently no medical explanation can be found (Kooiman 2004). This is in line with a number of studies reporting that CFS patients have a tendency to interpret bodily sensations as sign of physical disease (Dendy 2001). For example 86% of patients with fatigue syndrome attributed their fatigue to physical factors in one study (Wessely 1989). CFS patients are also shown to be more prone to attribute bodily sensations to illness and less likely to interpret these symptoms in terms of negative emotion, compared to both healthy adults and patients with multiple sclerosis (MS) (Dendy 2001)."

You couldn't parody that shit.

Although somebody should, and submit it for publication in a serious journal. It's been done before in other fields, and these psychoquackers are a sitting duck for such a takedown.