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

[inox]

Vogt tweeted the study at Sharpe - no feedback as I can see. Had been wondering what that lot would be making of this 'study', as Stubbhaug is sort of bragging about getting waaay better results/better theraphist - would love to see their analysis

 

[Jonathan Edwards]

I think this study, like the SMILE trial, may be useful in showing just how close the overlap is between so-called respectable science like PACE and complete junk. And the Cook Islands meeting makes it look very much as if these are all chums with the same aim of making money out of subcontracted psychological treatment from government-funded health care systems.

It is interesting that a Norwegian health authority has actually bought in to this. I think that goes a step further than anything in the UK so far where private clinics are not as far as I know being used. Not that the treatment may be any different but the politics look a bit different.

 

[Jonathan Edwards]

It would be interesting to know what members of the NICE guidelines committee thought about the validity of these figures from the study and in what way that might differ from PACE etc.

It seems hard to avoid the conclusion that any therapy that teaches patients to say they are better will lead to (some) patients saying they are better.

 

[benji]

It seems like in the work by Eili from January 2009 until mai 2010 (the first period of the study) that they have defined that CFS oxford equals G93.3 (that one we know) and F 48 neurasthenia.
Is that valid? Meaning F 48 is within oxford CFS.

 

[benji]

I also find this argument that neurasthenia nearly equals Fukuda in the thesis of Eili.

“Farmer and co-workers (1995) found that the ICD-10 neurastenia definition identifies almost all patients with CDC-defined CFS, suggesting that neurasthenic criteria and the CDC definition overlap and that the clinical groups are comparable.”

What a mess.

 

[inox]

It is interesting that a Norwegian health authority has actually bought in to this. I think that goes a step further than anything in the UK so far where private clinics are not as far as I know being used. Not that the treatment may be any different but the politics look a bit different.

Yes, in Norway, the centers for rehabilitation, where you go for 2-3-4 weeks/months to rehabilitate after surgery, stroke, learning to manage severe adult asthma etc, are private - with contracts with the health regions. (but rehabilitation can also be within the hospital, or local authorities - there are several layers) Also hospitals/health regions that lack treatment capasity can also buy surgery/treatment from the private sector.

But that's a long tradition, with mostly some pretty solid, long time private centers for rehabilitation, that in general have high trust and good reputations. It has not been a 'saving money'-politics.

What's unusual, is that Stubbhaug also does the diagnosis and basic information. I suspect this came in place some yeas ago, when public health authority demanded all health regions should offer ME-diagnostic, and "mastering your illness"-classes (hospitals have units for this)- and there just wasn't doctors willing to take that task.

 

[rvallee]

I think this study, like the SMILE trial, may be useful in showing just how close the overlap is between so-called respectable science like PACE and complete junk. And the Cook Islands meeting makes it look very much as if these are all chums with the same aim of making money out of subcontracted psychological treatment from government-funded health care systems.

It is interesting that a Norwegian health authority has actually bought in to this. I think that goes a step further than anything in the UK so far where private clinics are not as far as I know being used. Not that the treatment may be any different but the politics look a bit different.

A reasonable person would have thought bringing forward the utter quackery of the lightning process would have been the last straw and embarrassed colleagues would be angry at this dumbing down of their entire profession but there seems to be no limit to how far they can take the magic wand thing.

At this point I wouldn't be surprised if we get a clown therapy trial published in the Lancet and incorporated into a Cochrane review. The whole thing is operating with zero accountability or concern for ethics. It will end up in the same filing cabinet, but even phrenology at least attempted to have some measurable thing in the incantation process of distilling one's personal beliefs into psychobabble.

 

[rvallee]

I also find this argument that neurasthenia nearly equals Fukuda in the thesis of Eili.

“Farmer and co-workers (1995) found that the ICD-10 neurastenia definition identifies almost all patients with CDC-defined CFS, suggesting that neurasthenic criteria and the CDC definition overlap and that the clinical groups are comparable.”

What a mess.

I'm pretty sure Sharpe wrote directly and on multiple occasions that it is the same in his opinion. This is what they think, it's conversion disorder with a few extra steps and I don't understand why this is excluded from the conversation whenever their work is discussed. It may be kept out of some of the published work but the genuine opinion could not be any clearer, I don't understand why they're presented as doing serious medical work when they clearly don't see it as a medical condition and have not been shy about voicing it in friendly forums and journals.

 

[benji]

I'm pretty sure Sharpe wrote directly and on multiple occasions that it is the same in his opinion. This is what they think, it's conversion disorder with a few extra steps and I don't understand why this is excluded from the conversation whenever their work is discussed. It may be kept out of some of the published work but the genuine opinion could not be any clearer, I don't understand why they're presented as doing serious medical work when they clearly don't see it as a medical condition and have not been shy about voicing it in friendly forums and journals.

It becomes more and more clear to me as well, that this is the situation also here. Stubhaug does not go out of his way to give a different impression, he says that you can get ME in your relationship or because a boring job. He is a psychiatrist end the theses of Eili is in psychology.

What we can hope for there, is what an influential health politician, nearly became health minister, said:
“In addition, we need to research more about whether in this patient group there are also some who have special conditions that require other treatment. We must be open to that.” That’s us.

 

[Kalliope]

Big, critical news article about this study.

TV2: ME-pasienter raser etter "sensasjonell" studie
google translation: ME patients rage after "sensational" study

The article presents the study and the enthusiastic media coverage in Norway. Sissel Sunde has ME and has undergone Stubhaug's treatment. It made her worse. She talks about how studies like this undermines the severity of the disease. Prof. Ola D. Saugstad criticises the use of Oxford criteria and says it contributes to confusion about ME. He points to biomedical research in USA. The article also mentions the recent Parliamentary debate on ME and the motion for a suspension of GET and CBT. Stubhaug on the other hand says he and his co-authors have mainly received positive comments and that 56% of patients were diagnosed according to Fukuda, which are equivalent to the Canadian criteria. Prof. Soumerai's tweet about the paper should win the award for the "untrustworthy study of the year award" is mentioned too.

 

[inox]

From the promotion at 'Helse Fonna' (the health region) - posted earlier in the thread as well.
(google english - nynorsk (='new norwegian', written version of norwegian based on dialects) )

- Many patients can get better The treatment program in the study was developed by Bjarte Stubhaug in collaboration with Professor Gerd Kvale, and is based on experience from a previous study on treatment effect with CFS / ME

The study Stubhaug says this study is based on:

https://www.s4me.info/threads/cogni...trolled-trial-2008-stubhaug.8054/#post-142191

Patients diagnosed with F48, neurasthenia.

 

[rvallee]

From the promotion at 'Helse Fonna' (the health region) - posted earlier in the thread as well.
(google english - nynorsk (='new norwegian', written version of norwegian based on dialects)




The study Stubhaug says this study is based on:

https://www.s4me.info/threads/cogni...trolled-trial-2008-stubhaug.8054/#post-142191

Patients diagnosed with F48, neurasthenia.

Here to sell my plague-repelling rocks. I did a trial with people who did not have the plague after treatment. The treatment consists of teaching otter-rock-juggling. 100% of participants were free of plague at 1 year follow-up. By subjective questionnaire, I can report that they feel more energized. This result may be because they do not have the plague. Or not. Can't really tell, I'll claim it anyway since whatever nobody cares anymore apparently.

Please send Nobel by express jet. It will help sell my plague-repelling rocks, a true public service to keep the plague away. You don't want the plague, do you? Then buy my rocks. 100% satisfaction guaranteed (offer void for time travelers, inquire for bulk pricing).

 

[Kalliope]

Last Wednesday there was a radio interview here in Norway with leader of the national competence service for CFS/ME and with Bjarte Stubhaug.
NRK Frokostradio

Here's a summary

First guest was Ingrid Helland, leader of the national competence service for CFS/ME.

She said we don't know the causes of CFS/ME. There are probably several factors.
Many people are trying to find cause and biomarkers.

The most severe patients are very ill, but most patients have a mild or moderate degree. She emphasises that mild degree is 50% reduction of activity compared to before.

There's a discussion on whether CFS and ME are the same thing. It depends on how you define it.

We don't know how many in Norway who have this, but estimate between 10 - 20 000.

She thinks it is unnatural to distinguish between psyche and soma, body and soul. The whole human get sick, alt illnesses and all symptoms interplays, that goes for CFS/ME as well.

Anyone can get it, but there are some predisposition factors as gender and genetics. Severe illness and traumas at early age gan lead to a vulnerability to develop it.
Many relate the debut of illness to an infection. That was seen during the giardia-epidemic in Bergen.

There are no treatments, no pills. We have things that can help. Activity adaption and cognitive support may be of help.

Next guest was Bjarte Stubhaug.

They provide a medical and psychiatric evaluation of the patient's health to get a picture of the situation. Then they agree whether the patient should participate in the programme.
The patient start beforehand for some weeks before the concentrated treatment programme, with sleep hygiene, activity, mindfulness etc.

They teach a lot of medical knowledge about the medical foundation for this illness. They emphasise explaining why people get flu symptoms, dizziness. There is medical knowledge to explain these symptoms.

This can contribute to interpret the symptoms in a new way and to dare to change behaviour in the way the patients meet the symptoms.

Some knowledge is presented in a way that gives people a feeling of catastrophe. Patients can have a certain behaviour that Stubhaug think is dangerous and can hinder an improvement.

It is a serious illness, by involving extreme symptoms, but it is not a dangerous illness. It can be managed and one can improve. But first you have to understand the symptoms before you are safe enough to challenge them.

80% of patients with Chronic Fatigue Syndrome improves significantly. Stubhaug has seen it over many years.

There is a misconception that CFS is incurable. Stubhaug sees the opposite. Many can get completely well.

Everyone can be helped, if they are willing to participate. The treatment is simple, but demanding and one must be willing to challenge one's own understanding and behaviour.

One must dare to do things that lead to feeling uncomfortable.It is not dangerous. The symptoms may increase in the beginning, but one must feel sure it isn't dangerous because one understands what's happening in the body.

 

[Esther12]

Everyone can be helped, if they are willing to participate. The treatment is simple, but demanding and one must be willing to challenge one's own understanding and behaviour.

One must dare to do things that lead to feeling uncomfortable.It is not dangerous. The symptoms may increase in the beginning, but one must feel sure it isn't dangerous because one understands what's happening in the body.

That sounds less than impressive. Might be worth taking an exact quote of that for those looking to raise concern about the ethics of Stubhaug's approach.

 

[Jonathan Edwards]

They teach a lot of medical knowledge about the medical foundation for this illness. They emphasise explaining why people get flu symptoms, dizziness. There is medical knowledge to explain these symptoms.

Oh, really? How come nobody in ME research knows about this knowledge?
From his comments it sounds as if he is providing people with fabrications. I think there is a serious issue of informed consent here if the information is bullshit.

 

[Jonathan Edwards]

Everyone can be helped, if they are willing to participate. The treatment is simple, but demanding and one must be willing to challenge one's own understanding and behaviour.

One must dare to do things that lead to feeling uncomfortable.It is not dangerous. The symptoms may increase in the beginning, but one must feel sure it isn't dangerous because one understands what's happening in the body.

This strikes me as dishonest and probably against the law on informed consent. I don't think the UK BPS people have been foolish enough to make quite such unfounded claims in public.

 

[Kalliope]

That sounds less than impressive. Might be worth taking an exact quote of that for those looking to raise concern about the ethics of Stubhaug's approach.

Radio host: Who can be helped?
Stubhaug: Everyone, basically.
Everyone referred to us are in principle received. Then we look at what is the problem and the symptoms and then.. depending on whether people are willing to participate. It is in many ways a very simple treatment, but on the other hand demanding because it means you have to be willing to challenge your own.. both understanding of illness and illness behaviour.

It can be demanding because it involves to dare to do things that may lead to feeling uncomfortable. And then one must trust that this feeling of being uncomfortable isn't dangerous. It is only feeling uncomfortable, it isn't dangerous. You don't deteriorate even if the symptoms can increase in the beginning. As with many other treatments, one can feel worse at the start when becoming more physically active or being exposed for more things. But to be safe that it's not dangerous because you understand what is happening in the body.

 

[Kalliope]

Oh, really? How come nobody in ME research knows about this knowledge?
From his comments it sounds as if he is providing people with fabrications. I think there is a serious issue of informed consent here if the information is bullshit.

Yes, I too was curious about that. He didn't give any details about this.

 

[Hoopoe]

Oh, really? How come nobody in ME research knows about this knowledge?

It's probably a case of psychoneuroimmunobabble.

 

[Jonathan Edwards]

It's probably a case of psychoneuroimmunobabble.

Or maybe psychoneuroimmuno$$$$$$$babble