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

[Snowdrop]

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.

This vetting process is what allows them to make claims. Either they are people who have mild symptoms associated with fatigue or the evaluators consider the person to be well suggestible.

It undermines their claim that anyone can be helped with the big caveat that 'they must want to be helped'. I have no doubt that people with ME want and need help but he means believe us and that's the help.

I'm going to go back and read Hilda Bastian and Diane O'Leary. A palate cleanser of sorts.

 

[andypants]

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.

I’d like to see him say that to the face of a very severe patient.

 

[Snowdrop]

Be sad for him. This is a man who has not nor ever will see a Zebra. They don't exist.

 

[inox]

I'm so mad at this man

There are so many patients stories about detoriation after a stay there - but no sign of that in his paper. The patients that had to leave partway throug either - or the ones that could hardly manage some of the classes, and laid exhausted on the floor of their room. Nowhere to be seen in the paper.

I guess they wheren't deemed 'motivated' enough

 

[Snowdrop]

I'm so mad at this man

There are so many patients stories about detoriation after a stay there - but no sign of that in his paper. The patients that had to leave partway throug either - or the ones that could hardly manage some of the classes, and laid exhausted on the floor of their room. Nowhere to be seen in the paper.

I guess they wheren't deemed 'motivated' enough

Any thoughts on why these people might not speak up?

 

[Sean]

She emphasises that mild degree is 50% reduction of activity compared to before.

A 50% reduction in activity capacity is 'mild' ?

 

[inox]

Any thoughts on why these people might not speak up?

A patient did already, there was a news article with a patient and Saugstad (a medical doctor, advisorer for the ME association) - Kaliope posted it I think?

But you're right, it can be hard to step foreward here, maybe more so for long time patients. We've had more then a decade of Live Landmark (and helpers) framing ME as a stress disorder that you can will your way out of, and spreading really hateful stereotypes about ME-patients. Stepping foreward claiming you wasn't helped by variouse mental training, would make you a target for these people. Understandably, many ME-patients are reluctant to put themself into that stress. Also, many in both health care and the general public have bought into this.

Not sure I'm abel to really explaine. But the ongoing public debate here have taken it's toll on people?

 

[inox]

She emphasises that mild degree is 50% reduction of activity compared to before.

A 50% reduction in activity capacity is 'mild' ?

Yes, in both ICC and CC, that's the 'entry level' required to set an ME-diagnosis. Mild is not 'a mild illness', but from the grading - mild - moderate - severe. She emphasises that even what is called 'mild ME' is indeed very severe.

 

[andypants]

I'm so mad at this man

There are so many patients stories about detoriation after a stay there - but no sign of that in his paper. The patients that had to leave partway throug either - or the ones that could hardly manage some of the classes, and laid exhausted on the floor of their room. Nowhere to be seen in the paper.

I guess they wheren't deemed 'motivated' enough

He lives in his own little bubble where anything that doesn’t fit his worldview just doesn’t exist. It’s truly frightening how many supposedly educated people have no clue as to what high quality research looks like.

I also find it absurd that the radio station didn’t even raise any of the issues highlighted in the public debate these last few weeks. Patients, the ME Association, and doctors have all been criticizing the study in the media. How could they not even ask him to explain himself?

 

[Kalliope]

Pleasantly surprised today by a rather good article about this study on a news site about research.
The journalist has written about ME before and she's done her research before publishing the article.

The lead author of this study, psychiatrist Bjarte Stubhaug is interviewed. So are the professors Kristian Sommerfelt (paediatrician and neurologist) and Karl Johan Tronstad (researcher), both working in Fluge/Mellas team.

The article presents the study and its findings. Bjarte Stubhaug says this is first and foremost a programme for dealing with/living with chronic illness, not a treatment program for ME particularly.

Kristian Sommerfelt says the study had no control group and no objective measures on improvement. Also the participants are not representative for the patients. Patients were not randomly chosen, only those who chose this treatment and were motivated for it. That makes it likely that more severe patients with among other PEM didn't participate.

The article continues with discussing different criteria for ME and the cardinal symptom PEM.
Tronstad and Sommerfelt say their patients probably would not be able to participate in such an intensive program. Sommerfelt criticises Stubhaug for saying that you don't have to worry about triggering PEM. Sommerfelt says that on the contrary it's important to learn how to avoid PEM in order to function as best as possible.

Sommerfelt says that from his experience it's not very likely that anxiety for deterioration and exaggerated symptom focus play a big part in children and adolescents with strictly defined ME. He says the patients are used to living with discomfort. On the contrary it's typical that they want to and try, despite the symptoms. They try to increase the activity as much as possible. It's actually striking how quickly children and adolescents who improve, figure out that they can increase their activity. It's striking how extremely well a lot of children are at mastering severe illness, including ME.

Forskning.no: Kronisk utmattede følte seg bedre etter 4-dagers kurs. Men hva betyr resultatet egentlig for de ME-syke?
google translation: Chronic fatigued felt better after a 4-day course. But what does the result actually mean for ME patients?

 

[inox]

Stubbhaug:

Another important part of the treatment program is that the patient should learn that an increase in symptoms does not mean a worsening of the disease, says Stubhaug. He believes this frees the patients from trying to live more normally.

 

[Peter]

The article is quite good. Nice to actually have someone knowing what they are talking about, not speaking of Stubbhaug.

At first I wonder what kind of patients that can cope with the program- in itself it screams - not suited for ME-patients. A patient attending this will have serious PEM-issues, that worst case can ruin prognosis. So it’s seems kind of a mystery who these patients actually are?

The starting point is troubling, some sort of the BPS-stuff, the illness beliefs and such bs.
The insinuation that ME-patients don’t fully take out they’re potential cause of bad coping is nonsense beyond, and countered by both Sommerfelt and Tronstad. Stubbhaug just couldn’t be more wrong. Coping is about the only thing ME-patients are good at, and they are enduring immense challenges on a daily basis. They are not giving in, but challenging the disease beyond limits and living with really grim consequences with amazing stamina and with a mental strength that is hard to describe. That is in general the truth and coping with ME just don’t happen by itself, more than anything demands clear thoughts and flexibility. Patients are not scared of symptoms, but living with them. They accept and do understand their disease, how it unfolds and what works and not. How do patients get there? By trying and failing, hundreds and thousands of times. Learning by doing. To state that patients just don’t know anything just says a lot of the attitude of Stubbhaug towards patients.

That patients should learn that PEM doesn’t mean that the disease will get worse. Well. That is just a very dangerous “advice”. How many more testimonies do we need before having respect for all the patients that just have been hammered by trying to push trough. We need more data, long-run studies on actions and prognosis, but it is more than fair to say that exceeding PEM over and over again (because of no or wrongful advice and the will to push, a lethal combination) will have a negative impact in the long run.

 

[unicorn7]

Even if it wouldn’t get worse in the long run, isn’t it just normal coping to not want to feel like absolute crap all the time

I hate the talking about “symptoms” as though it’s some harmless change about yourself, that you just don’t like.
The actual symptoms are being ill or very ill, how should that possibly not bother people?

“Don’t worry about the vomiting, it doesn’t mean you have a disease”. What does it matter what causes it? It’s just as rotten to be vomiting all the time

 

[andypants]

I think it also says a lot about how little some people understand how horrible PEM can be. It's not like it's just a mild discomfort that can be ignored to get the most out of your life (sometimes it is, but ignoring it will make it worse until it is no longer anything you can possibly ignore), it's a crippling and destroying experience that at it's worst will leave you bedridden, paralyzed with pain and fatigue, unable to feed yourself, get to the toilet or even think about anything other than the pain for days.

 

[inox]

Read again, and agree with others - the article is pretty good. And so much better and balanced then we're used to from forskning.no, they've seem to have got it now. It's often been Wyller and Helland, with the ME association as the sole dissenting voice. Sommerfelt and Trondstad are doing a very good job at getting the message across

Even the intro by forskning.no is very clear:

But the study has significant limitations: It cannot say what effect the treatment has on patients with ME in general. It cannot tell us more about the causative mechanisms of the disease. It also does not provide any reliable knowledge of how effectively the four-day system was.

 

[Kalliope]

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.

 

[Hoopoe]

He wants patients that are already biased towards reporting improvement.

 

[Kalliope]

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.

There is also a collection of Stubhaug's articles. Some of them in English, if anyone wants to have a closer look, or perhaps the titles are sufficient..

English articles
A 4-day Mindfulness-Based Cognitive Behavioral Intervention Program for CFS/ME
Heart rate variability and fatigue in patients with chronic fatigue syndrome after a comprehensive cognitive behaviour group therapy program
Neurasthenia, subjective health complaints and sensitization
Cognitive-behavioural therapy v. mirtazapine for chronic fatigue and neurasthenia

Norwegian articles (translations of titles made by me)
An optimistic treatment perspective on chronic fatigue syndrome/ME
Uncertainty and illness, stress and mastering
Chronic fatigue syndrome/CFS/ME
When life is rough, life crisis and mastering
Mastering of chronic illness; Mind and body

 

[Kalliope]

The Swedish newspaper Aftonbladet had an article about the study this week. It's paywalled, but I was sent the article, and here's a translation of some pieces from it.

Aftonbladet: Studie: Behandling kan hjälpa mot ME
(Study: Treatment can help with ME)

A Norwegian doctor has tested treating patients with a short seminar involving mindfulness and physical exercise. The result: The patients improved and the positive effects lasted for a long time.
............
- First and foremost it's about getting knowledge about the illness and an understanding of what is happening in the body and that it's not dangerous to move and that "brain fog" is a common symptom. When you accept your illness, you can move on and think about "what can I do to improve?", says Bjarte Stubhaug, the psychiatrist at Clinic for stress medicine, who did the study.
...........
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.

One week after the seminar 90% stated they felt better. After a year it was 80%.
They felt they were in better physical shape and that even the fatigue had been reduced. Several stated they had made a complete recovery.
- I didn't think the treatment would be that effective. Even those who were severely ill got better.
When he looked for participants, it was important that they all were motivated
- That was alpha and omega. If you are stuck in the belief that it's not possible to improve your situation, it becomes in itself a self fulfilling prophecy.
- If you instead of lying down on the sofa go for a walk and notice you get better, you'll automatically shift your attitude to the illness. Dare to believe that the treatment works, don't be scared of challenging the body.
............
Doctor Carl-Gerhahrd Gottfries has helped patients with ME/CFS for over 20 years. He welcomes the Norwegian study and is not surprised over its results. He thinks the effect is unspecified, in other words that same effect would be seen in treatment of other illnesses. He wants the illness to get a higher status among doctors.
- Unfortunately there are still many doctors who dismiss these patients saying its psychosomatic, which of course is completely wrong. Why some develop ME/CFS is not clear. It often comes in relation to a virus infection, a difficult surgery or a hard child birth.

 

[Trish]

If you instead of lying down on the sofa go for a walk and notice you get better, you'll automatically shift your attitude to the illness. Dare to believe that the treatment works, don't be scared of challenging the body.

If you instead of lying down on the sofa go for a walk and notice you get better, you don't have ME.