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

Is there even a consensus in the profession (not sure which one to choose here, considering this is clinical psychology that is somehow loosely applied to medicine by way of *sprinkles pixie dust*) about what mindfulness even means? Like, if you asked 10 professionals, how many different answers would you get? Or is more like Feng-shui and everyone has their own strong personal opinions about what it means?

Because this is basically bridging hippie stuff, life coaching, psychotherapy, clinical psychology and psychiatry and applying it to a neurological (rightfully a neuroimmune but few medical professionals are aware of that) condition. So whose version of mindfulness? Is that a thing that medicine recognizes as a medical thing? Kind of important considering this kind of nonsense usually ends up in actual clinical guidelines that are prescribed by medical professionals, sometimes not even entirely officially.

 

Thank you @Trish for going through it and raising several good and valid points!

I don't understand how Stubhaug can publish a trial which is basically an evaluation done by himself of his center and the treatment he offers, without declaring any conflicts of interest. This is a privately run center, with a contract with public health authorities. Is this worth spending public money on in order to give ME patients some kind of offer? I know of several ME patients who deteriorated during and after a stay there, but this isn't registered at all in the trial..

Recovery Norge (the "patient organisation" initiated by LP-coaches and MD Henrik Vogt) has enthusiastically shared this study on their Facebook page and also recently shared an anonymous story by a psychiatrist with ME who participated in RituxME, withdrew herself from the trial and then recovered after visiting Stubhaug. I don't think that story will ever be possible to verify, but I worry Stubhaug's trial and stories like that will sound intriguing for politicians and health care workers and they will continue supporting Stubhaug by sending ME patients to him.

 

under Education
A coping model with focus on stress expectation, positive outcome expectancy and active regulation of health complaints and symptoms was introduced (50). We tried to communicate clearly that regardless of causes, regulation of symptoms and change might be possible. However, a willingness to challenge existing illness perceptions and illness behavior is needed, as well as a commitment to test suggested coping strategies.

So it all comes down to the patient's own commitment and willingness to change. When will this ever end?

 

A few more weird things. Why would one present themes as perfectionism and overachievement if the patients didn't bring it up themselves? How many ME-patients can manage a four day program from 9.am to 3-5 p.m (I had no idea it was that much) and does the paper reveal that the only therapist conducting the treatment is the main author himself?

CBT sessions
During group therapy sessions the patients presented their concerns and typical coping strategies related to regulation of fatigue symptoms, e.g. sleep and physical activity. If not presented by the patients, topics like perfectionism and expectations from others, overachievement and fear of failure were introduced by the therapist.

Procedure
The daily program lasted from 9 a.m. to 3–5 p.m

Discussion
There was only one therapist conducting the intervention program through the study period. This represents a strength in terms of a consistent approach across the intervention period, while it also makes it difficult to generalize whether the treatment approach is robust and feasible in clinical setting with several therapists with different training.

 

What the f....?

 

I don't even know where to begin, so I'll just mention one thing that, for reasons unbeknownst to me, is so often left out of both their and our discussions.

ME/CFS is chronic, and for many it relapses-remits, meaning symptoms fluctuate in intensity.

If we're going by improvements or relapses, you can pretty much flip a coin as to whether I will feel better or worse four months from now -- and yes, the difference will be significant. This time last year, I was having a debilitating, five week long crash.

Heaven forbid I'd undergone four days of CBT; then that'd be why I'm better, this year.

 

Who could do that? I'm too brain foggy to do it myself, but may contribute in a group. Anyone?

 

The website for the public health care region where Stubhaug works, Helse Fonna, has an enthusiastic article about the research paper.

Helse Fonna: Nytt behandlingsprogram gir håp til pasientar med kronisk utmatting
Google translation: New treatment program gives hope to patients with chronic fatigue
A new four-day treatment program significantly improved overall 80 percent of patients in the study in a recent article published by researchers in Helse Fonna.

- The results are startling. Most studies on the treatment of CFS / ME have shown only low or moderate efficacy. Here, we see significant improvement in 80 per cent of patients, even one year after the treatment is completed, says psychiatrist and researcher Bjarte Stubhaug who has led the study.
...
The researchers also have data on further changes in health problems and physical function in patients who returned and participated in follow-up programs after one year, with up to three years of follow-up. The material is not yet analyzed. Those findings that has been published, are the first in what is likely to become a number of articles based on a larger, long-term study between 2009 and 2017, where 900 patients with CFS / ME have participated in similar treatment.


Facebook post says: A new treatment program gives hope to patients with CFS/ME, also known as chronic fatigue syndrome. As many as 80% of the patients in the study became significantly better after just four days - and the effect is long lasting. The psychiatrists Bjarte Stubhaug and Haldis Lier are two of the authors behind the study.

 

These claims of recovery are pathetic...... Four days!..... Sharpe claimed to know of patients who recovered, under his regimen, after a single telephone conversation that enabled them to reconceptualise their illness, reduce their fear of symptoms, and overcome their avoidance.

 

Oh, ****.....

Getting that same dreadfull fealing from when pace got out... It's been terrible for ME-patients in that health district for years, now the timing of this combined with the evaluation of the national competance service.....

 

Here's a description of what his program is about - from the exellent and sourced blogpost about the status quo for ME patients, the science etc by Nina Steinkopf, the person behind the petition against the national competance service.

It's very much the same description of what ME supposedely is, and how to get out of it, as LP-coaches here use

https://melivet.com/2018/12/14/me-pasientenes-fortvilte-kamp-mot-skadelig-behandling/

 

Coyne's not a fan of the study.
https://twitter.com/user/status/1082640986189250563

 

Chronic fatigue. Michael Sharp. in Science and Practice of Cognitive Behaviour Therapy (1997) edited by David M Clark and Christopher G Fairburn @p400

 

Perhaps he should be commanding the great ship Brexit too ....

 

Here's a reply he got from a Stephen Soumerai - twitter presentation: Professor of Population Medicine, Founding/Former Director of the Div Hth Policy and Insurance Research Harvard Med School,Harvard Pilgrim Health Care Institute
https://twitter.com/user/status/1082759126424449024