A 4-day mindfulness-based cognitive behavioural intervention program for CFS/ME. An open study, with one-year follow-up, 2018, Stubhaug et al

[Snow Leopard]

But the patient should not exercise hard and run several kilometers each day. On the contrary, high intensive exercise can worsen the symptoms.
- It's enough with short walks in combination with mindfulness exercises which is an import therapeutic tool.

The notable part about all this is well, short walks don't lead to improved fitness. Either short intense activity (to build VO2max), or prolonged exercise just below the ventilatory threshold (to increase endurance) is required for improved fitness.

If you are reporting substantial benefits in 1 week, it is far more likely that you are observing biased reporting than any sort of fundamental improvements. Of course scientists are just as susceptible to confirmation bias as anyone else...

 

[John Mac]

Study covered in a Norwegian science website

http://sciencenordic.com/chronic-fatigue-syndrome-promising-four-days-treatment

 

[inox]

Study covered in a Norwegian science website

http://sciencenordic.com/chronic-fatigue-syndrome-promising-four-days-treatment

Headline is horrible misleading :-/

Seems to be based on the forskning.no article, with Sommerfelt and Tronstad? Not quite the same, as I remember it, more Stubhaug and less Sommerfelt. But this about questionnaires is new...?

But the study has significant limitations: Researchers cannot say what effect the treatment has on patients with CFS in general. It does not shed light on the causative mechanisms of the disease.

It also does not provide any clear scientific information — other than questionnaire responses — on how effective the four-day class was.

 

[inox]

Stubhaug has made a new website with more information than the previous one.
Under the section for health personell he writes that he prioritise patients with stress medical health issues, and that he has particular competence and treatment offer for fatigue illnesses/chronic fatigue syndrome/CFS/ME.
If the doctor/patient/other health personell know the patient well, he wants an assessment of the ability to go through systematic mastering programs, psychological and somatic vulnerability and motivation for change and improvement. He (and everyone else working with change and mastering) have bad experience on treatment effect with patients who primarily seeks illness confirmation.

Somehow, the new, overhauled website made the 'study' feel even more like an advertisment masquarading as science now.

He wants patients that are already biased towards reporting improvement.

Yup. The same trick Landmark/LP used, at least in it's early days. They do seem to learn a lot from each other There used to be an application process to get to attend an LP-course, rather similar to what Stubhaug describes in his 'study' - with a 'motivational meeting' before inclusion.

For LP there used to be an application form to fill out, and you could get a phone call from the course leader to determine if you where 'open to the process'. Or - didn't ask any critical questions, wanted to 'belive and trust the process' etc. Just as the type of patient Stubhaug wants, the ones that are more likely to fill out a questionaire with a positive rating, no matter what.

 

[Jonathan Edwards]

One thing that is striking about all these get up and go therapies is that there isn't a single grain of information that isn't just what any of us could have thought up if we were convinced getting up and going was the answer.

In contrast, skilled advice always includes things you didn't expect. So if you are teaching someone to turn in skiing you tell them to keep your body in the same position all the time. Only move your legs. Who would have been able to predict that?

These CBT and mindfulness and Lightning people say they have these great skills but none of it seems to amount to what you could have made up in your head - except perhaps standing on a piece of paper (the STOP is obvious).

Which leads me to suspect that what they say was just made up in their heads.

 

[Andy]

 

[Jonathan Edwards]

If you are reporting substantial benefits in 1 week, it is far more likely that you are observing biased reporting than any sort of fundamental improvements.

Yes, I think these results are a nice indication that this positive psychological effect people like Chalder think works through affecting physical functional potential is pure and simple subjective bias aka a 'placebo effect'. If you can switch it on like a light bulb it has nothing to do with actually making people healthier.

 

[inox]

One thing that is striking about all these get up and go therapies is that there isn't a single grain of information that isn't just what any of us could have thought up if we were convinced getting up and going was the answer.

Also, all these 'get up and go theraphies' is exactly what every patient have tried to do themselves, just getting more of the same - with added blaming - isn't really helpful, or even inovative

 

[inox]

If you are reporting substantial benefits in 1 week, it is far more likely that you are observing biased reporting than any sort of fundamental improvements. Of course scientists are just as susceptible to confirmation bias as anyone else...

Yes, I think these results are a nice indication that this positive psychological effect people like Chalder think works through affecting physical functional potential is pure and simple subjective bias aka a 'placebo effect'. If you can switch it on like a light bulb it has nothing to do with actually making people healthier.

It's even worse, in Stubhaug's study. Abouth half of the 'treatment effect' happened before any treatment at all - in the interval between the 'motivational meeting' for assesment and start of treatment.

 

[Kalliope]

Study covered in a Norwegian science website

http://sciencenordic.com/chronic-fatigue-syndrome-promising-four-days-treatment

Yes, this is based on the forskning.no article in post #130 in this thread, but as @inox says, not quite identical. Odd to see all this coverage of this study at ScienceNordic and Swedish Aftonbladet, as well as several Norwegian places.

This interesting quote from Stubhaug was not included in the ScienceNordic article:
- This is first and foremost a programme for dealing with/living with chronic illness, not a treatment program for ME specifically, Stubhaug says.

 

[Mithriel]

it might not even be a placebo effect just an education in how to fill in forms

 

[inox]

it might not even be a placebo effect just an education in how to fill in forms

Agree, Stubhaugs 'study' (and I use quotes because it's lack of resemblance with science) to me reads as an exercise in how to maximise the biasing of research participants, more than any placebo respons.

It's like, take any good researche practice for minimising bias - then do the exact opposite.

 

[rvallee]

For LP there used to be an application form to fill out, and you could get a phone call from the course leader to determine if you where 'open to the process'. Or - didn't ask any critical questions, wanted to 'belive and trust the process' etc.

But totally not a cult. It's just a coincidence that this is how cults recruit. Totally legit.

It's going to be such an expensive anchor on their neck in the next few years. Giving institutional credibility to pseudoscience is something that needs severe punishment, many medical licenses will need to be revoked. The decision-makers involved are completely reckless and incapable of exercising the responsibility they hold.

 

[Jonathan Edwards]

it might not even be a placebo effect just an education in how to fill in forms

I am sure it is - hence the quotation marks around 'placebo effect'.

 

[rvallee]

"When it's too good to be true, hype the crap out of it, promote it relentlessly, never back down, charge people as much as possible, make evermore outlandish claims, reject the premise of every objection as the whines and rants of idiots and label your critics as unhinged militants"

Hmmm... I don't think that's how the saying goes. Weird.

Who knew that removing all accountability and self-correcting mechanisms would lead to junk science? Double weird.

Instead people just keep dying of a manageable disease and seeing their whole lives destroyed because people who have lost their freaking minds are dumbing down medicine into adopting pseudoscience and magical thinking. I'm going to be vexatious here and call these people assholes, major, life-destroying, unethical assholes. Because that is exactly what they are and their inability to understand that will not be an excuse in the major class action lawsuits that will be necessary to clean this dumpster fire.

 

[rvallee]

Agree, Stubhaugs 'study' (and I use quotes because it's lack of resemblance with science) to me reads as an exercise in how to maximise the biasing of research participants, more than any placebo respons.

It's like, take any good researche practice for minimising bias - then do the exact opposite.

That's pretty much what FINE, PACE and similar trials normalized. It's now accepted for psychological "research" to do everything they can possibly make to bias results and still pretend they have something significant, at least when it comes to BS "treatment" of chronic illness.

It's incredible how instead of being careful around a vulnerable population, it is encouraged to mislead and literally make stuff up as long as it leads to justifications for restricting actual medical care and research. All because of a freaking gut feeling by people who don't understand the first thing about the reality of chronic illness, relying instead of fictitious nonsense that has systematically failed in the past in the exact same way and for the exact same reasons.

At this point such a trial could literally spend a full day dedicated specifically to teach participants to rate themselves better on questionnaires and it would be accepted as having a low incidence of bias if the results align with what was expected/planned. The dumbening continues while the ends justify the means, which themselves become the ends, a life of questionnaires and mindless self-help disguised as health care.

 

[Snowdrop]

Old thread but I was perusing it and looking at the paper. For reasons not clear to me seems there is currently some interest in viewing.

See Here

Yes they are very clueless. And they remain so despite regular contact with this illness group. It's clear that what they lack is any firm understanding of medical science. This ignorance provides them complete latitude to just make stuff up.

 

[andypants]

Old thread but I was perusing it and looking at the paper. For reasons not clear to me seems there is currently some interest in viewing.

See Here

Yes they are very clueless. And they remain so despite regular contact with this illness group. It's clear that what they lack is any firm understanding of medical science. This ignorance provides them complete latitude to just make stuff up.

Might have something to do with a new «health center» that aims to offer this «treatment» to all chronically ill patients to “improve their health”.

I think. Could only read the headlines, but with what you’re saying I think I’m probably right.

 

[Kalliope]

Yes, a brand new health center, Health in Hardanger (Helse i Hardanger) is now being build and will be finished next year. This will be an offer specifically for patients with chronic obstructive lung disease and other respiratory problems, people (particularly children and adolescents) with light psychological issues, patients with back- and neck problems and people with diabetes 2. The patients will have a program "from early morning to late afternoon with physiotherapy, exercise, going over medications, psychological support and consultations with doctors".

The program is much inspired by the 4 day treatment program for anxiety developed by Gerd Kvale, co author to the Stubhaug study.

According to this article in Bergens Tidende (paywalled) the patients will first "be helped to bring out the right motivation for the stay". Then they will come to the center for a week's intensive treatment and afterwards be followed up through internet. Health in Hardanger plan on receiving 1,500 - 1,600 patients each year.

The CEO is former director of Haukeland university hospital/Health Bergen, Stener Kvinnsland. The current board at Haukeland university hospital/Health Bergen has agreed to cooperate. The hospital will have the medical responsibility for the patients and treatment, but will not spend money. Kvinnsland hope there will come reimbursement deal in the long run. The board at Haukeland university hospital has as a condition for continuing to support this, that there will be independent research on the effect.

The headline of the article is: Here chronically ill will improve in four days

Journalist: Do you really think that chronically ill patients will improve after just a few day's intensive treatment?
Kvinnsland: Yes, we believe this program will create change. Socio-economically it will mean less strain for the health care system and that more will be able to participate in working forces.

 

[Jonathan Edwards]

The patients will have a program "from early morning to late afternoon with physiotherapy, exercise, going over medications, psychological support and consultations with doctors".

I did a stint as a trainee at the Camden Rehabilitation Centre that did just this in 1984. Soon after it was closed down. The aim was the same - more people able to participate in the working forces.