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

Yes, wish more would grok this. "Random fatigue we can't explain and literally no other requirements" is Oxford, and it's the criteria used by 90% of the researchers in the UK. Wish they'd call it idiopathic chronic fatigue and not even CFS. That'd be nice.

 

When they first started I wondered why they did not leave ME alone and just concentrate on people with fatigue. Simply having fatigue is dreadful and is worthy of study but ME is as separate a disease as MS or any other disease with fatigue as a symptom.

As the years passed I came to see that they needed the seriousness of ME to claim grants and be seen as big players even though their research was actually about fatigue. And now they are using their success with "ME" to claim their treatments will also work miracles for other diseases.

 

I don't think the main problem with this study is the use of Oxford criteria actually.

With all the other problems, with the obvious very weak study design, and added to that, stories from patients that have been to his clinic - also perhaps questionable data. I don't think this study can even claime to add knowledge about Oxford-patients.

The objections I've seen in norwegian have mainly been about the patients selection, and I think that might be a bit of a mistake. That leaves the impression that it's a debate about who are "the real ME-patients" - and not how bad this study is, and that we want better science.

If it really was possible to help a selected patients populations, ME-patients or not, to even a bit better health with this therapy, that would of course be wonderfull. For the general public, this probably seems strange to object to.

 

Ideology and magical thinking.

Also we are literally incapable of countering this, we are the perfect defenseless population almost no one cares about. If we relent, it's evidence that it works. If we object, it's also evidence that it works. There are very few of those left. Previous psychosomatic populations like ulcers, autism, MS and others, had the pesky habit of being snatched away by research, a problem solved by making a strong case for ending all research in this disease.

 

Yesterday there was a more personally angled reply in "Bergens Tidende" to the newscase about Stubbhaugs 4-days treatment from a patient:

https://www.bt.no/btmeninger/debatt/i/OnKBak/ME-syke-kan-ikke-tenke-seg-friske

 

So he was talking out of his mouth when he said it?

 

Maybe out of someplace else...

 

https://twitter.com/user/status/1090073505201381376

 

Happy to see somone outside of here writing about this study! As bad as it is, it's still beeing promoted by "Helse Fonna" - the health region where Stubbhaug is. The situation is a bit nightmare'ish :/

I'm not sure how much impact this bit had though:

What isn't clear from the study description (or at least I'm not finding it mentioned?) - is that Stubbhaug have made a formal deal with "Helse Fonna". All suspected ME-patients are to be referred to him for diagnostic. Then, if you are found to have ME - or "ME", (his version), it's also him that delivers the introductory classes and/or rehabilitation.

All health regions are mandatory to have diagnostic, classes giving you the basic information and rehabilitation. In Helse Fonna - that's all him.

It's possible to get referred to another health region, but everywhere have waiting lists and they will prioritize their own patients. For classes, if your own health region offer these services, you need their permission to go anywhere else - as they will get the bill. Added to that, NAV = work and pension, will demand that you have been to these classes before applying for disability.

So unless you have the health to travel, and the money to pay privatly for diagnostic - you're pretty much trapped It's not impossible to go elsewhere, but it's not easy,

https://helse-fonna.no/nyheiter/nytt-behandlingsprogram-gir-hap-til-pasientar-med-kronisk-utmatting

 

ETA:
Made a long post - deleting it for now, but saving the content in a file until able to re-read, as I suspect I'm mixing up things and numbers, and don't want to confuse things.

I'm sorry if anyone had the chance to read my ramblings...

If anyone is able, please take a look at the blog Kaliope posted earlier? There seems to be numbers not quit adding up, between Stubbhaugs study, and a thesis done on his patients/treatment...?

https://totoneimbehl.wordpress.com/...stubhaug-med-grovt-forskningsetisk-overtramp/

 

Here's a direct link to the blog post at Questioning Answers
A 4-Day Mindfulness-Based Cognitive Behavioral Intervention Program for CFS/ME" but..

I did um-and-ah about whether I should blog about the findings reported by Bjarte Stubhaug and colleagues [1] observing that "a brief, concentrated treatment program for CFS/ME might be highly beneficial."

The reasoning behind my reticence was primarily to do with the study design whereby "a 4-day group intervention program, comprised by education, cognitive group therapy sessions, mindfulness sessions, physical activity and writing sessions, within a context of cognitive behavioral therapy, mindfulness, acceptance and commitment model" was delivered to over 300 people diagnosed with Chronic Fatigue Syndrome/Myalgic Encephalopathy (CFS/ME) and self-report results plotted "1 week before and 1 week after the intervention program, and at 3 months and 1 year after the intervention" without any control group or any kind of blinding. Even the researchers themselves wrote that their study design make "conclusion of the actual effect of the treatment program [in part or whole] and its impact on the clinical course through the follow-up period difficult." But, here I am...

 

Sorry - English only for me. Anyone else had a look?

 

Here's a google translation:

ToTo Neuroimmunologisk Kurativ Behandling: På ME-fronten: Bjarte Stubhaug med grovt forskningsetisk overtramp
google translation: At the ME-frontline: Bjarte Stubhaug with severe research ethical oversteps

Not in my wildest imagination, had I thought that researchers would misuse the PACE study's unregulated, as in unapproved protocol change, and then call it a new consensus for measurement efficacy in treatment studies for patients with Myalgic Encephalopathy (ME) disease. This has actually happened in publication with psychiatrist Bjarte Stubhaug with the health trust Helse Fonna 's best blessing. This is not only grossly unethical in terms of research, but it is immoral and grossly fraudulent, as in not good research practice.

 

So, I have gotten the study description/protocol, that was accepted by the research ethics comity. It describes something completely diferment, where CFS/ME is not at all in focus, hardly mentioned. Boom!

 

Well done, Benji

 

Can you share it here, is that allowed?

 

I am not sure. Headline:

«Changes in health problems, functional levels, quality of life and coping in a general public psychiatric patient population: Effect of evidence-based interventions.»

«The present course of study is an integral part of a contractual practice in psychiatry in collaboration with Helse Fonna and UiB. The practice represents a separate level between 1st-line service and hospital-based outpatient clinics, and is primarily an offering to patients with somatoform and stress-related disorders, chronic fatigue syndrome, anxiety and depression (ICD-10: F30-34, F40-F48, G93.3) with varying degree of co-morbidity. The patients are referred from the 1st line service and hospital departments, and prioritization of patients is done on the basis of assessed needs, according to national prioritization criteria for assessment of the right to health care and the right to necessary health care.»

(Google translate)

The protocol has severe lackings, and I have asked the research ethic comity about more documents. Next week I suppose.

 

One of the things that are problematic is that the case number of REKs approval has 2011 in it. It should be 2008, the study should be approved before it begins.
And there are other things that are lacking which should disqualify the study from approval. It is kind of a mystery right now.

 

Thank yoy for lookin into this

Wow, if that turns out the be true...

 

Oh, duh even more fogged up than I thought, not even realizing what language I'm reading